IS THERE COVERAGE FOR PRE-EXISTING CONDITIONS UNDER THE AFFORDABLE CARE ACT?

PROJECT PAPER:  THE AFFORDABLE CARE ACT AND POLYCYSTIC KIDNEY DISEASE, IS THERE COVERAGE FOR THIS PRE EXISTING CONDITION?

 

 

 

 

 

 

 

 

 

 

 

James Myers

Keller Graduate School of Management-Online HS544

April 20, 2013

PROJECT PAPER

  1. I.                BACKGROUND:   (10) – DESCRIBE THE PROBLEM, ORGANIZATION, OR SITUATION YOU SELECTED; IDENTIFY THE SPECIFIC ISSUES OF INTEREST OR CONTROVERSY; AND PRESENT BACKGROUND/FACTS OF THE PROBLEM, ORGANIZATION, OR SITUATION THAT WILL ENABLE THE READER TO CLEARLY UNDERSTAND THE ISSUE.

 

The problem I have selected to discuss for my project is the effect the Affordable Care Act has on the issue of Polycystic Kidney Disease and health insurance coverage.[i]  Polycystic kidney disease (PKD) is an inherited disorder where groups of noncancerous, fluid-filled sacs (cysts) develop within the kidneys.[ii] The cysts vary in size and, as they accumulate more fluid, they can grow very large. Although kidneys usually are the most severely affected organs, polycystic kidney disease can cause cysts to develop elsewhere in the body, too. The disease causes a variety of serious complications that can lead to renal failure and eventually to End Stage Renal Disease.[iii]  There is no cure for PKD and currently the only two solutions are dialysis and/or a kidney transplant.[iv]  These are medical attempts to replace what a kidney does[v].  Because PKD is an inherited disease, it exists in a person from the date of his/her birth.  The nature of the disease is such that it slowly progresses and frequently goes undetected until one’s kidneys actual fail.[vi]

PKD is not a rare occurrence.  It is one of the most actively inherited diseases in human history.  By far and away it is the most common of all life-threatening generic diseases, as it affects 600,000 Americans and 12.5 million children and adults worldwide[vii].  To demonstrate how common the occurrence of PKD is, the PKD Foundation states that the number of people who have polycystic kidney disease is greater than the combined number of people with cystic fibrosis, muscular dystrophy, hemophilia, sickle cell anemia, Down’s syndrome, and Huntington’s disease.[viii]  It is twice as common as multiple sclerosis and 20 times more common than cystic fibrosis.[ix]

The term pre-existing condition refers to a disease, condition or disability that has occurred before a set of health benefits begins.[x]  Most insurance companies define a pre-existing condition in one of two ways:

1) A pre-existing condition is any condition for which the patient has already received medical advice or treatment prior to enrollment in a new medical insurance plan; or,

2) A pre-existing condition is anything for which symptoms were present and a prudent person would have sought treatment for.  [xi]

By definition, PKD is a disease that is present before enrollment and due to the potential for kidney failure or death, a reasonably prudent person would have sought treatment for the condition.  PKD is a pre-existing condition in every case of its existence.  If you have been receiving treatment for your PKD or chronic symptoms related to PKD such as hypertension, then PKD and those symptoms may be considered a pre-existing condition, and you could be denied coverage.[xii] This would be particularly devastating as there are only 2 solutions for this issue; costly dialysis or a kidney transplant.[xiii]  As we will see in this paper, not only is the transplant itself very expensive, but the autoimmune suppressant medication that one must take to maintain the health of his/her new kidney is extremely expensive, and not completely covered by Medicare.[xiv]  Health insurance coverage before the ACA would permit carriers to not list a PKD patient, charge an expensive premium, put a cap on coverage, drop a patient once they were discovered to be ill or when medical services became particularly expensive.[xv]

The Affordable Care Act (ACA)(commonly referred to as ‘Obamacare’) was first enacted in March 2010 through the Patient Protection and Affordable Care Act and then amended by the Health Care and Education Reconciliation Act.[xvi]  The law includes many elements that will be implemented over the course of several years.  They are designed to expand health care coverage and control the growth of health care costs.  [xvii]This universal coverage will help those with pre-existing conditions.  First, insurers will be barred from rejecting applicants based on health status once the exchanges are operating in 2014.[xviii]  Secondly, for patients with kidney disease or kidney failure, denial of coverage for pre-existing conditions is currently prohibited.[xix] Thirdly, children can no longer be denied health care coverage because of a pre-existing condition.[xx]  If you have a pre-existing condition and have been uninsured for more than six months originally, the ACA has established state high-risk pools called Pre-existing Condition Insurance Plans, which may offer relief until 2014.[xxi]  Under the ACA, pre-existing condition plans offer comprehensive health coverage.[xxii]  Eligibility varies, as do premiums and covered benefits.

The statistics concerning pre-existing conditions and the ACA are staggering:

“According to a new analysis by the Department of Health and Human Services, 50 to 129 million (19 to 50 percent of) non-elderly Americans have some type of pre-existing health condition.  Up to one in five non-elderly Americans with a pre-existing condition – 25 million individuals – is uninsured.  Under the Affordable Care Act, starting in 2014, these Americans cannot be denied coverage, be charged significantly higher premiums, be subjected to an extended waiting period, or have their benefits curtailed by insurance companies.[xxiii]

 

 

I have formulated the issues in this project paper as follows:

  1.  What is Polycystic Kidney Disease (PKD)?
  2. What is a Pre-Existing Condition for health insurance purposes?
  3. Is PKD considered to be a pre-existing condition?
  4. How does the Affordable Care Act (ACA) address the issue of pre-existing conditions and End Stage Renal Disease?

 

 

 

 

 

  1. II.             DEFINE THE PROBLEM: (10)-IDENTIFY AND CLEARLY STATE THE PROBLEM, THE MANAGEMENT ISSUE, IN WHICH AN ELEMENT OF THE IDENTIFIED PROBLEM OR SITUATION IS NOT MEETING EXPECTATIONS. REMEMBER THAT WHAT APPEARS TO BE THE PROBLEM MAY ACTUALLY BE JUST A SYMPTOM OF A BIGGER PROBLEM – DIG DEEP TO BE SURE YOU’VE IDENTIFIED THE REAL PROBLEMS. IF THERE APPEARS TO BE MORE THAN ONE PROBLEM/ISSUE, DECIDE IF THEY ARE SEPARATE OR RELATED ISSUES.

 

STATE THE PROBLEM IN THE FORM OF A QUESTION. FOR EXAMPLE, IF A WORK GROUP IS NOT PERFORMING EFFECTIVELY, AN EFFECTIVE PROBLEM STATEMENT MIGHT BE “HOW CAN THE STAFF SHORTAGE IMPROVE?” RATHER THAN SIMPLY “SHORT STAFF PROBLEMS.”

 

Issue: How does the Affordable Care Act address the issue of no health insurance coverage for pre-existing conditions like Polycystic Kidney Disease?

 

 

  1.  LITERATURE REVIEW :

 

Polycystic Kidney Disease: An Overview, http://www.mayoclinic.org/polycystic-kidney-disease/?wt.srch=1&wt.mc_id=google&keyword=minnesota_polycystic_kidney_polycystic_kidney&campaign=mcr_kidney_transplant&state=national&kw=polycystic%20kidney&ad=17330200157&Network=Search&SiteTarget=&gclid=CMz64IeGlrYCFYpDMgod3j0ALA (Mayo Clinic Website)(2013); (General discussion about PKD);

 

Polycystic Kidney Disease: What is polycystic kidney disease?, http://www.kidney.org/atoz/content/polycystic.cfm (National Kidney Foundation’s Website)(2013); (General discussion about PKD);

 

Polycystic Kidney Disease:  Definition, Diagnosis and Prognosis, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245 (Mayo Clinic Website)(2013);

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Institute Website)(2013); Polycystic Kidney Disease, (PKD) http://www.medicinenet.com/polycystic_kidney_disease/article.htm (2013).(Discussion concerning the effect of PKD on kidney function in the form or various questions and answers)

 

Polycystic Kidney Disease: What is polycystic kidney disease?, http://www.kidney.org/atoz/content/polycystic.cfm (National Kidney Foundation’s Website)(2013); (Definition of PKD)

 

Learn About PKD, The Science of PKD, http://www.pkdcure.org/learn/arpkd (2013); (General discussion about PKD);

 

Common Questions About PKD: What do Kidneys do? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013) (Description of how our kidneys work and how PKD effects kidney function);

 

Patient information: Polycystic kidney disease (Beyond the Basics) http://www.uptodate.com/contents/polycystic-kidney-disease-beyond-the-basics (2013); (Broad discussion of PKD);

 

Kidney Basics, http://www.kidneyfund.org/kidney-health/?gclid=CI6D9cuJlrYCFe8WMgod7CUA1Q (2013) (American Kidney Fund Website). (General kidney information);

 

Polycystic Kidney Disease (PKD) FACT SHEET,  from the PKD Foundation, 4901 Main Street, Kansas City, MO 64112-2634(2013); (Statistics concerning PKD);

 

Webinar, What the Affordable Care Act Means to the PKD Community, https://www.youtube.com/watch?feature=player_embedded&v=9C5qiGVMtsI (December 12, 2012) (Video on ACA and effects on PKD patients, including pre-existing condition coverage)

 

PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012). (Discussion of pre-existing conditions)

 

Kidney Failure: Choosing a Treatment that is Right for You, http://kidney.niddk.nih.gov/kudiseases/pubs/choosingtreatment/ (National Kidney and Urologic Diseases) (Discussion of pro and cons of dialysis and transplantation)

 

Information Clearinghouse (NKUDIC) Website) (last updated September 20, 2010). (Discussion of pro and cons of dialysis and transplantation)

 

Flyer obtained from the National Kidney Foundation’s NKF Government Relations Office, 5335 Wisconsin Avenue NW, Suite 300, Washington DC 20015, 202-244-7900 as part of Kidney Advocacy Training (March, 2013). (“The Medicare End Stage Renal Disease program pays for dialysis or transportation for over 600,000 kidney disease patients every year.”)

 

Immunosuppressive Drug Coverage, www.kidney.org/…/IMMUNOSUPPRESSIVE_DRUG_COVERGE_12.pdf (March, 2013)(same flyer in PDF format).(Discussion of Medicare coverage for anti-rejection mediations in effect for 36 months);

 

Affordable Care Act:  The New Health Care Law at Two Years: Health Insurance Coverage Before The ACA, www.whitehouse.gov/sites/default/files/uploads/careact.pdf (2013) (White House Website); (Discussion of ACA after passage date of 2 years)

 

PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 at 8  (From the PKD Foundation)(2012). (Discussion of PKD and pre-existing conditions);

 

Pre-Existing Condition Insurance Plan, ACA and Pre-Existing Conditions, http://www.dirigohealth.maine.gov/Pages/pre_exist.html  (2013); (Discussion of PKD and pre-existing conditions);

 

Video, Pre-existing Conditions and the Affordable Care Act http://www.healthcare.gov/videos/2013/03/pre-existing-conditions-and-the-aca.html (2013); (Discussion of PKD and pre-existing conditions);

 

Affordable Care Act at 3: Consumer Protections, 3, http://www.healthcare.gov/blog/2013/03/anniversary-consumer-protections.html (2013); (Discussion of PKD and pre-existing conditions);

 

At Risk: Pre-Existing Conditions Could Affect 1 in 2 Americans:129 Million People Could Be Denied Affordable Coverage Without Health Reform, http://www.healthcare.gov/news/reports/preexisting.html (2013)(“ A “pre-existing condition” is a health condition that exists before someone applies for or enrolls in a new health insurance policy.  Insurers generally define what constitutes a pre-existing condition.  Some are obvious, like currently having heart disease or cancer.  Others are less so – such has having asthma or high blood pressure.  While insurers generally determine the presence of a pre-existing condition based on an applicant’s current health status, sometimes a healthy applicant can be deemed to have a pre-existing condition based on a past health problem or evidence of treatment for a particular condition.

 

Prior to the Affordable Care Act, in the vast majority of States, insurance companies in the individual and small group markets could deny coverage, charge higher premiums, and/or limit benefits to individuals based on pre-existing conditions.  A recent national survey found that 36 percent of those who tried to purchase health insurance directly from an insurance company in the individual insurance market were turned down, were charged more, or had a specific health problem excluded from their coverage.  Another survey found that 54 percent of people with individual market insurance were worried that their insurer would drop their coverage if they got really sick.”);

 

At Risk: Pre-Existing Conditions, http://www.healthcare.gov/news/reports/preexisting.html (2013). (Discussion of PKD and pre-existing conditions);

 

Advocate:  PKD and Affordable Care Act: http://www.pkdcure.org/advocate/affordable-care-act (2013) (Power Point) (PKD Foundation Website); (Discussion of PKD and pre-existing conditions);

 

PKD And Health Insurance, www.pkdcure.org/document.doc?id=357 (2012) (PDF)(Discussion of PKD and pre-existing conditions);

 

At Risk: Pre-Existing Conditions Could Affect 1 in 2 Americans: 129 Million People Could Be Denied Affordable Coverage Without Health Reform, http://www.healthcare.gov/news/reports/preexisting.html (2013);

 

Video: What the Affordable Care Act Means to the PKD Community,

http://www.pkdcure.org/learn/multimedia/webinars/what-the-aca-means-to-the-pkd-community (2012); (Discussion of PKD and pre-existing conditions);

 

Webinar:  Understanding the ACA and  PKD, https://www.youtube.com/watch?feature=player_embedded&v=9Cwww.healthcare.gov (2012). (Discussion of PKD and pre-existing conditions);

 

The  Affordable Care Act By The Numbers

http://www.healthcare.gov/videos/2013/03/aca-by-the-numbers.html (2013), (Statistics concerning the ACA);

 

[1] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013). “   What are cysts?

A cyst in the kidney begins as an out-pouching of the nephron. Cysts can occur anywhere along the length of the nephron. Although polycystic means “many cysts”, only 2% of nephrons form cysts. The composition of the fluid inside the cysts often reflects the area in the nephron from which the cyst arose.

Approximately 70% of cysts detach from the nephron when they are still small, about 2 mm (1/8 inch) in diameter. Over time, the cysts enlarge and can become filled with clear fluid or fluid that contains blood or white blood cells.

Cysts can form in other organs, as well as the kidney; the most common extra renal site is the liver. Current research suggests that liver cysts form from cells lining the bile ducts or tubules of the liver rather than the liver cells themselves. It appears that rather than take the place of functioning liver cells, cysts merely push the liver cells aside. This is why liver cysts don’t cause liver failure even though the liver can become quite enlarged due to cysts.

Research has suggested that there are at least three components to cyst formation:

1. Cell proliferation: The cells of a cyst wall reproduce themselves more than normal kidney cells. This makes the cysts grow in size. 2. Fluid secretion: Secretion is a way of moving fluid across a cell. To form a cyst, there must be fluid. Secretion across the cyst wall into the cyst lumen; otherwise, there would merely be a ball of cells. 3. Abnormal basement membrane: The basement membrane is a very thin layer of tissue that the cyst cells sit on. In ADPKD this layer is thicker than usual. The basement membrane remodels as cysts grow. If this did not happen, cysts would not be able to enlarge.

In general, cysts cause problems because of their size and the space they occupy. The size of the kidneys and liver is directly related to how many and how big the cysts are. For example, people with kidneys over 15 cm (6 inches) are more likely to have pain and kidney dysfunction than people with smaller kidneys.”

See Also:  Common Questions About PKD: What are cysts? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013)

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013):

“Is PKD contagious? How do other family members get it?

PKD is not contagious. It is a genetic disease meaning you have it in your chromosomes. Every person has 23 pairs of chromosomes, making a total of 46. Twenty-two pairs are called autosomes, and one pair is specifically devoted to determining the gender of an individual (X and Y chromosomes). Because the ADPKD genes are on autosomes, men and women have an equal chance of inheriting this disorder.

During reproduction, the chromosome pairs split in the formation of female eggs and male sperm. The woman donates 23 of her chromosomes to the baby and the man donates 23 in the sperm. In this way, when an egg is fertilized by a sperm, it will have the normal complement of chromosomes.

There are four possible ways the egg and the sperm of parents where one has ADPKD can combine. Two will contain the chromosome with the gene for ADPKD and two will not. Therefore, each child of a parent who has ADPKD has a 50 percent possibility of inheriting the affected chromosome.”

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013):

 

“How does a person get PKD?

ADPKD: Because PKD is an inherited disorder, the dominant form of the disease (ADPKD) is passed from one generation to the next by an affected parent. An ADPKD parent has a 50% chance of passing the PKD mutation to each of his/her children at conception – having a child who inherits ADPKD with each pregnancy, no matter how many children a person has. In some families, all the children are affected; in other families, none are. Many families with multiple children will have affected and unaffected children. Although most individuals with ADPKD have a family history, scientists have also discovered that approximately 10 percent of the PKD patient community became affected through spontaneous mutation.

Two genes that cause ADPKD have been identified. About 85% of people with ADPKD have mutations in the PKD1 gene, located on chromosome 16. The remaining 15% of individuals have mutations in the PKD2 gene located on chromosome 4. There are no other PKD genes that have been identified to date.

The disease caused by ADPKD1 is more severe than that caused by ADPKD2. Individuals with mutations in the PKD1 gene develop cysts, hypertension and loss of kidney function at an earlier age compared to the ADPKD2 gene.

ARPKD: This recessive disease requires a mutated gene from each parent for the disease to manifest in a child, who has, then, 2 mutated genes. In most cases, there is no family history of the disease, and the parents do not have the disease themselves but are carriers.”

 

The  Affordable Care Act By The Numbers

http://www.healthcare.gov/videos/2013/03/aca-by-the-numbers.html (2013)

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013). “   What are cysts?

A cyst in the kidney begins as an out-pouching of the nephron. Cysts can occur anywhere along the length of the nephron. Although polycystic means “many cysts”, only 2% of nephrons form cysts. The composition of the fluid inside the cysts often reflects the area in the nephron from which the cyst arose.

Approximately 70% of cysts detach from the nephron when they are still small, about 2 mm (1/8 inch) in diameter. Over time, the cysts enlarge and can become filled with clear fluid or fluid that contains blood or white blood cells.

Cysts can form in other organs, as well as the kidney; the most common extra renal site is the liver. Current research suggests that liver cysts form from cells lining the bile ducts or tubules of the liver rather than the liver cells themselves. It appears that rather than take the place of functioning liver cells, cysts merely push the liver cells aside. This is why liver cysts don’t cause liver failure even though the liver can become quite enlarged due to cysts.

Research has suggested that there are at least three components to cyst formation:

1. Cell proliferation: The cells of a cyst wall reproduce themselves more than normal kidney cells. This makes the cysts grow in size. 2. Fluid secretion: Secretion is a way of moving fluid across a cell. To form a cyst, there must be fluid. Secretion across the cyst wall into the cyst lumen; otherwise, there would merely be a ball of cells. 3. Abnormal basement membrane: The basement membrane is a very thin layer of tissue that the cyst cells sit on. In ADPKD this layer is thicker than usual. The basement membrane remodels as cysts grow. If this did not happen, cysts would not be able to enlarge.

In general, cysts cause problems because of their size and the space they occupy. The size of the kidneys and liver is directly related to how many and how big the cysts are. For example, people with kidneys over 15 cm (6 inches) are more likely to have pain and kidney dysfunction than people with smaller kidneys.”

 

Common Questions About PKD: What are cysts? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013) (Description of how cysts are formed, what they look like and why they harm kidneys);

 

Polycystic Kidney Disease: An Overview, http://www.mayoclinic.org/polycystic-kidney-disease/?wt.srch=1&wt.mc_id=google&keyword=minnesota_polycystic_kidney_polycystic_kidney&campaign=mcr_kidney_transplant&state=national&kw=polycystic%20kidney&ad=17330200157&Network=Search&SiteTarget=&gclid=CMz64IeGlrYCFYpDMgod3j0ALA (Mayo Clinic Website)(2013); (General discussion of what PKD is, how it is diagnosed, and the prognosis for patients who suffer from PKD)

 

Polycystic Kidney Disease: What is polycystic kidney disease?, http://www.kidney.org/atoz/content/polycystic.cfm (National Kidney Foundation’s Website)(2013); (General discussion of what PKD is, how it is diagnosed, and the prognosis for patients who suffer from PKD)

 

Polycystic Kidney Disease:  Definition, Diagnosis and Prognosis, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245 (Mayo Clinic Website)(2013); (General discussion of what PKD is, how it is diagnosed, and the prognosis for patients who suffer from PKD);

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Institute Website)(2013). (Discussion of how PKD affects one’s health);

 

 

Symptoms, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=symptoms (Mayo Clinic Website) (2013);

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013).

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013):

“Is PKD contagious? How do other family members get it?

PKD is not contagious. It is a genetic disease meaning you have it in your chromosomes. Every person has 23 pairs of chromosomes, making a total of 46. Twenty-two pairs are called autosomes, and one pair is specifically devoted to determining the gender of an individual (X and Y chromosomes). Because the ADPKD genes are on autosomes, men and women have an equal chance of inheriting this disorder.

During reproduction, the chromosome pairs split in the formation of female eggs and male sperm. The woman donates 23 of her chromosomes to the baby and the man donates 23 in the sperm. In this way, when an egg is fertilized by a sperm, it will have the normal complement of chromosomes.

There are four possible ways the egg and the sperm of parents where one has ADPKD can combine. Two will contain the chromosome with the gene for ADPKD and two will not. Therefore, each child of a parent who has ADPKD has a 50 percent possibility of inheriting the affected chromosome.”

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013):

 

“How does a person get PKD?

ADPKD: Because PKD is an inherited disorder, the dominant form of the disease (ADPKD) is passed from one generation to the next by an affected parent. An ADPKD parent has a 50% chance of passing the PKD mutation to each of his/her children at conception – having a child who inherits ADPKD with each pregnancy, no matter how many children a person has. In some families, all the children are affected; in other families, none are. Many families with multiple children will have affected and unaffected children. Although most individuals with ADPKD have a family history, scientists have also discovered that approximately 10 percent of the PKD patient community became affected through spontaneous mutation.

Two genes that cause ADPKD have been identified. About 85% of people with ADPKD have mutations in the PKD1 gene, located on chromosome 16. The remaining 15% of individuals have mutations in the PKD2 gene located on chromosome 4. There are no other PKD genes that have been identified to date.

The disease caused by ADPKD1 is more severe than that caused by ADPKD2. Individuals with mutations in the PKD1 gene develop cysts, hypertension and loss of kidney function at an earlier age compared to the ADPKD2 gene.

ARPKD: This recessive disease requires a mutated gene from each parent for the disease to manifest in a child, who has, then, 2 mutated genes. In most cases, there is no family history of the disease, and the parents do not have the disease themselves but are carriers.”

 

Common Questions About PKD: How Do I Get PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013); (Discussion of PKD not being contagious, but inherited through genes);

 

Common Questions About PKD: Is PKD Contagious? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013), (Discussion of PKD not being contagious, but inherited through genes);

 

 

Common Questions About PKD: What are the Symptoms of PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013)  (Discussion of PKD not being contagious, but inherited through genes);

 

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013)

“High blood pressure, or hypertension, affects about 60% to 70% of men and 40% to 50% of women with ADPKD — in many cases the percentage tends to increase as GFR decreases. High blood pressure begins early during the course of ADPKD, often before there is abnormal kidney function. One theory for hypertension in ADPKD is that as cysts form and enlarge they press on blood vessels in the kidney, resulting in decreased blood flow. Sensors in the kidney tubule react as though the blood pressure in the kidney is low. A hormone called renin is then secreted, which in turn generates angiotensin II, constricting the blood vessels, and causing high blood pressure. If not treated, hypertension damages the kidneys, enlarges the heart and can cause strokes.”

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013) “Chronic pain or heaviness is one of the most common problems for people with ADPKD. The pain is usually in the back or the sides and occasionally in the abdomen. The pain can be intermittent and mild requiring only occasional pain medicine such as Tylenol. In a small number of people, the pain can be constant and quite severe. The only non-steroidal anti-inflammatory over-the-counter pain medication recommended for use in ADPKD patients is Tylenol which is an analgesic. The other compounds may be further damaging to the kidneys.”

 

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013)

“Hematuria, or blood in the urine, is something that nearly 50% of those with ADPKD will experience. The urine may look pink, red or brown. Passing small amounts of red blood cells in the urine that can only be seen under a microscope may also occur. This is called microscopic hematuria. Blood in the urine can last for less than a day or go on for days. Strict bed rest, increased fluid intake, and acetaminophen (if there is pain) are usually the treatments if the bleeding is prolonged. Most of the time, bleeding is self-limited and resolves with these conservative measures.”

 

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013)

“Urinary tract infection (UTI) is caused by bacteria that have reached the bladder, kidneys or the cysts themselves. The infection usually starts in the bladder and can progress up the ureters into the kidneys. Although both men and women have UTIs, they are far more common in women. UTIs are common in the general population, but they appear to be more frequent in those with ADPKD. The most common symptom of UTI is pain or burning with urination and/or an urgent need to urinate even though there is only a small amount of urine. When the infection is in the kidney or in a cyst, there may be a sudden onset of fever, chills and back or flank pain.”

 

 

Polycystic Kidney Disease (PKD) FACT SHEET, from the PKD Foundation, 4901 Main Street, Kansas City, MO 64112-2634(2013).(A  PKD kidney can sometimes reach the size of a football, while a normal kidney is fist sized. )

 

 

 

                       

 

 

 

Polycystic Kidney Disease (PKD) FACT SHEET, from the PKD Foundation, 4901 Main Street, Kansas City, MO 64112-2634(2013).

“Kidney stones occur in about 20%-30% of people with ADPKD, compared to 8%-10% in the general population. One reason kidney stones are more common may be due to cysts blocking the tubules, preventing normal drainage. When the urine stays in one area longer than it should, crystals can form and cause kidney stones. Another reason that stones may form in some people with ADPKD is that there is a decrease in urine citrate. Urine citrate is a substance that prevents formation of kidney stones. The symptoms of kidney stones are severe pain in the back, side or into the groin. Often there will be blood in the urine when passing a kidney stone.”

 

PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 at 4 (From the PKD Foundation)(2012); (Discussion of PKD and various insurance issues, including pre-existing conditions);

 

Complications of PKD, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=complications (Mayo Website)(2013); (Discussion of the complications of PKD);

 

First Steps: Common Questions, http://www.pkdcure.org/learn/adpkd/first-steps-questions (2013).

“There are numerous complications associated with polycystic kidney disease including:

•           High blood pressure. Elevated blood pressure is a common complication of polycystic kidney disease. Untreated, high blood pressure can cause further damage to your kidneys and increase your risk of heart disease and stroke.

•           Loss of kidney function. Progressive loss of kidney function is one of the most serious complications of polycystic kidney disease. Nearly half of those with the disease have kidney failure by age 60. If you have high blood pressure or blood or protein in your urine, you have a greater risk of kidney failure.

Polycystic kidney disease causes your kidneys to gradually lose their ability to eliminate wastes from your blood and maintain your body’s balance of fluids and chemicals. As the cysts enlarge, they produce pressure and promote scarring in the normal, unaffected areas of your kidneys. These effects result in high blood pressure and interfere with the ability of your kidneys to keep wastes from building to toxic levels, a condition called uremia. As the disease worsens, end-stage kidney (renal) failure may result. When end-stage renal failure occurs, you’ll need ongoing kidney dialysis or a transplant to prolong your life.

•           Pregnancy complications. Pregnancy is successful for most women with polycystic kidney disease. In some cases, however, women may develop a life-threatening disorder called preeclampsia. Those most at risk are women who have high blood pressure before they become pregnant.

•           Growth of cysts in the liver. The likelihood of developing liver cysts for someone with polycystic kidney disease increases with age. While both men and women develop cysts, women often develop larger cysts. Cyst growth may be aided by female hormones.

•           Development of an aneurysm in the brain. Localized enlargement of an artery in your brain can cause bleeding (hemorrhage) if it ruptures. People with polycystic kidney disease have a higher risk of aneurysm, especially those younger than age 50. The risk is higher if you have a family history of aneurysm or if you have uncontrolled high blood pressure.

•           Heart valve abnormalities. As many as one-quarter of adults with polycystic kidney disease develop mitral valve prolapse. When this happens, the valve no longer closes properly, which allows blood to leak backward.

•           Colon problems. Weaknesses and pouches or sacs in the wall of the colon (diverticulosis) may develop in people with polycystic kidney disease.

•           Chronic pain. Pain is a common symptom for people with polycystic kidney disease. It often occurs in your side or back. The pain can also be associated with a urinary tract infection or a kidney stone.”

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013).

“Early in the progression of the disease there are generally no symptoms at all. In fact, many people are never diagnosed with ADPKD because they either have no symptoms or a few symptoms that mimic other diseases. Often the first sign is high blood pressure, blood in the urine, or a feeling of heaviness or pain in the back, sides, or abdomen. Sometimes the first sign is a urinary tract infection and/or kidney stones.

Over time, as cysts grow, the kidneys will increase in size and weight. The additional size can cause the crowding of other organs, which can become uncomfortable and even painful. In some cases, the kidneys become so large that they cause the midsection to bulge. Men can look like they have a “beer belly” and women can appear pregnant. “

 

Common Questions About PKD: What Will PKD Do To Me? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013).

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013).”Can I prevent PKD?

Currently, no treatment can prevent cysts from forming or enlarging. Because PKD is a hereditary (genetic) disease, the only way to fully prevent it if you have a family history is to not have children. There is no intervention that will prevent the development of PKD in someone who inherits it.

Prenatal genetic testing is possible using samples from either chorionic villus sampling or amniocentesis. These genetic tests can either involve a direct search of the gene for mutations or an indirect association using linkage analysis. For linkage analysis, DNA samples are required from the fetus, the parents and other affected family members.

Another option for pre-natal diagnosis is a recently developed procedure called pre-implantation genetic diagnosis, or PGD. This is an early form of genetic diagnosis that involves the detection of specific genetic abnormalities in single cells taken from fertilized human embryos. The PGD procedure involves in vitro fertilization whereby eggs harvested from a mother are fertilized in a laboratory with the father’s sperm. Then, the fertilized embryos are tested for a specific genetic disorder (such as ARPKD) by removing one or two cells for genetic analysis. Embryos that are diagnosed as free of the disorder are then placed in the uterus with the intent to initiate a pregnancy.”

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013).

 

National Kidney Foundation Flyer, “How Do We Care For Our Kidneys?

 

A.        Monitor You BP And Cholesterol

B.        Monitor Your Sugar (Glucose)

C.        Control Your Weight

D.        Don’t Smoke

E.         Maintain A Healthy Diet

F.         Don’t Overuse Sleep Aid Or OTC Pain Meds

G.        Get An Annual Checkup

H.        Find Out If CKD, Diabetes Or Heart Disease Runs In Your Family

I.          Exercise

J.         Ask About Being Tested For CKD

K.        Key:  NKF Offers Free Screening “

 

10 Steps for Protecting Kidney Health, http://www.kidney.org/news/newsroom/newsitem.cfm?id=29 (National Kidney Foundation Website)(2013)

“Recent studies indicate that 26 million American adults suffer from chronic kidney disease (CKD) and that the number is likely to rise unless Americans get serious about prevention. Primary risks include: diabetes; heart disease; high blood pressure; a family history of kidney disease; and age 60-plus. Secondary risks include: obesity; autoimmune diseases; urinary tract infections and systemic infections.

 

Exercising regularly and controlling weight are just two of the ten ways keep your kidneys healthy.

 

10 Ways to Keep Kidneys Healthy

•Exercise regularly

•Don’t overuse over-the-counter painkillers or NSAIDs

•Control weight

•Get an annual physical

•Follow a healthful diet

•Know your family’s medical history

•Monitor blood pressure & cholesterol

•Learn about kidney disease

•Don’t smoke or abuse alcohol

•Talk to your doctor about getting tested if you’re at risk for CKD”

 

Common Questions About PKD: What Can I Do to Slow or Stop PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013), (Discussion that there is not cure for PKD and 50% of PKD patients experience kidney failure before the age of 60);

 

Test and Diagnosis, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=tests-and-diagnosis (Mayo Clinic Website)(2013); (Discussion how PKD is diagnosed, how difficult it is to diagnose and how it mimics other medical issues);

 

 

 

 

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013) .

“How is PKD diagnosed?

A physician is alerted to the possibility of ADPKD in three different settings: when someone reports that there is a family history of ADPKD, when there are signs and symptoms that commonly occur in ADPKD, or when a test is done for some other reason and cysts are found in the kidney.

Currently, there are three main clinical tests that can be used to diagnose a person with PKD: ultrasound, computed tomography (CT) or magnetic resonance imaging (MRI).

Ultrasound is the most common and least costly screening method for ADPKD. A recent research study has produced diagnostic criteria that are useful for testing individuals having either the PKD1 or PKD2 mutation in the usual clinical setting in which molecular genotyping is seldom performed. To read a medical publication on this topic – which can also be printed and taken to your doctor – please click here.

Computed tomography (CT) and MRI scans are likely to be more sensitive than ultrasound but the sensitivity of these methods have not been systematically analyzed yet. CT scans, however, involve radiation and may also require iodinated contrast dye which can be toxic to the kidneys. CT scans or MRIs may be indicated for the evaluation of certain complications like bleeding into a cyst or a suspected kidney stone or alternatively if a more sensitive screening test with the ability to detect small cysts is deemed necessary.

DNA testing is available for ADPKD. There are two types of DNA tests: Gene linkage testing and Direct Mutation analysis. Gene linkage can determine ADPKD status with a 99 percent probability in informative families. Linkage testing is not a direct analysis of the DNA sequence of the PKD1 and PKD2 genes. Rather, it relies on the identification of certain “markers” in the DNA of several members of a family in which PKD has been diagnosed. For linkage analysis, blood samples must be obtained from the person being tested (the “proband”) as well as from several (typically three or more including the proband) persons from more than one generation of the proband’s family, including those affected and unaffected with ADPKD. A detailed family history and pedigree are also required. The results are typically reported to all family members that provided blood samples for the analysis.

In contrast, direct DNA sequencing requires only a single sample from the proband. This method is a direct analysis of the DNA sequences of the PKD1 and PKD2 genes. It is private, and the results are only reported to the proband’s physician and the patient (the proband). Using very sophisticated DNA sequencing apparatus, each of the nearly 17,000 “bases” of DNA are analyzed and the entire sequence is thus determined. This method is capable of identifying those changes in the sequence that are indicative of disease. It may be the only option if family members are unavailable or unwilling to participate in a linkage study. Each of these methods has pros and cons….you can check on the costs…..”

 

Common Questions About PKD: How is PKD Diagnosed? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013) (Discussion how PKD is diagnosed)

 

 

 

Complications of PKD, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=complications (Mayo Website)(2013); (Discussion of complications of PKD);

 

Common Questions About PKD: What are the Complications of PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013). (Discussion of complications of PKD);

 

Prevention, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=prevention (Mayo Website)(2013); )(Discussion of treatment courses and medications given for PKD before kidney failure);

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013), ) (Discussion of treatment courses and medications given for PKD before kidney failure);

 

Treatment and Drugs, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=treatments-and-drugs (Mayo Website)(2013)(Discussion of treatment courses and medications given for PKD before kidney failure);

 

Polycystic Kidney Disease, Kidney Failure, http://www.davita.com/kidney-disease/causes/polycystic-kidney-disease-(pkd)/polycystic-kidney-disease/e/5003 (DaVita Website)(2013); (Discussion how PKD can lead to kidney failure);

 

What are the Signs of Kidney Failure? http://www.pkdcure.org/learn/adpkd/first-steps-questions (PKD Foundation Website)(2013); (Discussion how PKD can lead to kidney failure);

 

Kidney Failure, Common Questions About Kidney Failure, http://www.pkdcure.org/learn/adpkd/kidney-failure-questions (2013), (Discussion how PKD can lead to kidney failure);

 

PKD Kidney Support Group, http://www.dailystrength.org/c/Polycystic_Kidney_Disease_PKD/forum/126518-kidney-transplant (2013). (Question and answer about pre-existing conditions);

 

ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013) :

“What are complications of PKD?

ADPKD is not just a kidney disorder; other organs can be affected, including the liver, spleen, pancreas, vasculature, testes, seminal vesicles and intestines.

A large percentage of people with ADPKD will develop liver cysts during their lifetime. Liver cysts rarely occur in those under the age of 30 but do form and increase as a person ages. Even though there is an increase in liver size, the amount of functional liver tissue remains fairly constant. Liver cysts occur as often in men as in women. However, women have liver cysts at a younger age than men and usually have more aggressive liver disease. Women who have been pregnant are more likely to have liver cysts; and the cysts are more numerous and larger in women who have been pregnant compared to women who have not been pregnant.

Cardiovascular complications include high blood pressure, cerebral aneurysms and mitral valve prolapse (MVP), a condition where the valve separating the top and the bottom of the left side of the heart does not close properly. Sometimes this causes blood to leak back to the top part of the heart. This is called regurgitation and can be heard as a heart murmur. MVP occurs in approximately 26% of the people who have ADPKD compared to 2%-3% of the general population. Symptoms that can be associated with MVP are palpitations, a feeling that the heart is running away or that there are extra beats in the heart, and chest pain that is not associated with exercise or exertion.

People with ADPKD have about a 5%-10% risk of developing intracranial aneurysms; the percentage is higher if there is a family history of aneurysms. An aneurysm is an out-pouching in a blood vessel. Intracranial aneurysms occur in the blood vessels of the brain. Aneurysms can leak or rupture. The symptoms of a ruptured aneurysm can include sudden severe headache, pain in moving the neck, nausea and vomiting, and even loss of consciousness. All such symptoms require immediate medical attention. Patients with ADPKD and a family history of intracranial aneurysms have a higher incidence of developing an aneurysm (22%) and should be screened more frequently.

Gastrointestinal complications of ADPKD include diverticulosis Diverticula are out-pouchings of the large intestine (colon). It seems that people with ADPKD who are on dialysis or have had a transplant have diverticula more often and have more complications from diverticula, including infection (divertiulitis), than people who have other kidney diseases. In addition to liver cysts, cysts can also form in the pancreas.

.           Am I at risk for other diseases because I have PKD?

ADPKD is not just a kidney disorder; other organs can also be affected.

These can include, but are not limited to liver cysts:

.           • Liver Cysts • Mitral Valve Prolapse (MVP)  • Intracranial Aneurysms  • Hernias • Diverticulosis

We include some brief information about each of these conditions which can be associated with ADPKD. If you have ADPKD, you and your family should be aware of these possibilities so you can play a major role in your own care.

Liver Cysts  Over 80% of people with ADPKD have cysts in the liver during their lifetime. Liver cysts occur in those under the age of 30 but they are small and often detectable only by sensitive MRI scanning.

The liver can remain normal in size with few cysts or become enlarged. Even though there is an increase in liver size, the amount of functional liver tissue remains fairly constant. Therefore, rather than have cysts take the place of normal tissue as occurs in the kidney, cysts in the liver seem to push good tissue aside. This appears to be the reason that normal liver function is preserved even with many cysts and enlarged liver size.

Liver cysts occur more often in women than men; women have liver cysts at a younger age and more and larger cysts than men. Women who have been pregnant are more likely to have liver cysts; and the cysts are also more numerous and larger in women who have been pregnant compared to women who have not been pregnant. This suggests that female hormones may influence the development of liver cysts.

Mitral Valve Prolapse (MVP)  Mitral valve prolapse (MVP) is a condition where the valve separating the top and the bottom of the left side of the heart (left atrium and left ventricle) does not close properly. Sometimes this causes blood to leak back into the left ventricle. This is called regurgitation and can be heard during an examination of the heart as a heart murmur. Symptoms that can be associated with MVP are palpitations, a feeling that the heart is running away or that there are extra beats in the heart, and chest pain that is not associated with exercise or exertion. MVP occurs in approximately 26 percent of the people who have ADPKD compared to 2 – 3 percent of the general population. The majority of people with MVP never experience any major problems.

Intracranial Aneurysms  An aneurysm is an outpouching in a blood vessel, which can leak or rupture. In these events the symptoms can include sudden severe headache, pain in moving the neck, nausea and vomiting, difficulties with speech or movement, and even loss of consciousness. All such symptoms require immediate medical attention.

Recent studies done in the United States suggest that people with ADPKD have about a 5 – 10 percent risk of developing intracranial aneurysms. Intracranial aneurysms also seem to cluster in certain families – that is, if a member of your family has an aneurysm or has ruptured an aneurysm, you may be at a higher risk of having an aneurysm yourself.

Because the risk for aneurysm is small, not everyone with ADPKD needs to be tested. However, people who have ADPKD and a family history of aneurysm should be tested, along with those whose job or hobbies would put them or others at risk if they lost consciousness (such as those who fly airplanes or drive buses). It is important to inform your physician if you have a family history of intracranial aneurysms and/or if you have a high-risk occupation or hobby.

Hernias Both inguinal and umbilical hernias are more common in those with ADPKD. Inguinal hernias are outpouchings of the abdominal wall in the area of the groin and umbilical hernias are outpouchings of the abdominal wall at or near the navel. These should be surgically repaired if they are large or are causing other problems, just as they would be in someone who does not have ADPKD.

.           Diverticulosis Diverticula are outpouchings of the large intestine (colon). It seems that people with ADPKD who are on dialysis or have had a transplant have diverticula more often and also have more complications from diverticula, including infection, than people who have other kidney diseases. At the present time, we are not recommending any routine evaluation for this possible symptom.”

 

Common Questions About PKD: What are the Complications of PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013). (Discussion about the complications of PKD and symptoms);

 

PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions, (Discussion about PKD and issue with health insurance)

 

THE AFFORDABLE CARE ACT  (PKD Foundation Website) (2013); (Discussion about the ACA)

 

Patient Protection and Affordable Care Act, Pub. L. No. 111-148, 24 Stat. 119 (2010), as amended by Health Care and Education Reconciliation Act (ACA), Pub. L. No. 111-152, 124 Stat. 1029 (2010).(The law itself);

 

 

PRE-EXISTING CONDITIONS; Webinar, What the Affordable Care Act Means to the PKD Community, https://www.youtube.com/watch?feature=player_embedded&v=9C5qiGVMtsI (December 14, 2012); (Video discussion about ACA and PKD patients, including pre-existing conditions);

 

 

The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm (2013).

“Universal Coverage Can Help those with Pre-Existing Conditions

 

A key component of the reform law is the government’s requirement that U.S. citizens buy health insurance–known as the individual mandate. Assuming that insurance is affordable, universal coverage would benefit people with pre-existing conditions, such as kidney disease. Provisions in the ACA eliminate annual and lifetime caps on the amount of expenses that health insurance covers. Among other things, these provisions are an opportunity to address discrimination against living organ donors seeking health insurance and as a way of providing an option for kidney transplant recipients who lose Medicare coverage for anti-rejection medications.”

 

Health Insurance: Paying For Pre-Existing Conditions, http://www.investopedia.com/articles/pf/09/covering-medical-costs.asp#12821421892212&close (Accessed August 11, 2010).

Pre-Existing Condition
A pre-existing condition is a medical condition that existed prior to the date the patient signed up with a health insurance provider. Most insurance companies use one of two definitions to identify such conditions. Under the “objective standard” definition, a pre-existing condition is any condition for which the patient has already received medical advice or treatment prior to enrollment in a new medical insurance plan. Under the broader, “prudent person” definition, a pre-existing condition is anything for which symptoms were present and a prudent person would have sought treatment. Pre-existing conditions can include serious illnesses, such as cancer, less serious conditions, such as a broken leg, and even prescription drugs. Notably, pregnancy is a pre-existing condition that will be treated regardless of prior treatment.

While the definitions are fairly easy to understand when you know which one will be applied to your circumstances, it gets more complicated after you factor in the additional rules regarding coverage. Navigating through the bureaucracy begins with an understanding of the Health Insurance Portability And Accountability Act (HIPAA), which provides limited protection for consumers enrolled in group healthcare plans with regard to healthcare coverage and pre-existing conditions. (For more insight, read Fighting The High Costs Of Healthcare.)”

 

 

PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012);(Discussion of issue with persons afflicted with PKD and various forms of insurance, including pre-existing conditions like PKD);

 

 

PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions (2013)(Discussion of issue with persons afflicted with PKD and various forms of insurance, including pre-existing conditions like PKD);

 

Making a Clinical Diagnosis of PKD: Pros and Cons, http://www.pkdcure.org/research/making-a-clinical-diagnosis-of-pkd-pros-and-cons (PKD Foundation Website) (2013)(“ insurers may consider his childhood diagnosis of PKD to be a ‘pre-existing condition’ and deny coverage”);

 

Henig, Do You Really Want to Know if You Have a Disease Gene? http://www.nasw.org/users/robinhenig/gene_testing.htm (April 27, 1998) (“I myself am at risk for a genetic disease called polycystic kidney disease. My father died of PKD two years ago, when he was 76, and because the gene is dominant I run a 50-50 chance of inheriting it. I can take a blood test to see if I carry the gene most commonly associated with PKD, or I can have a sonogram to see if my kidneys look diseased. But I have done neither.

 

It’s weird that I, a medical journalist committed to the idea that knowledge is always better than ignorance, have chosen to remain ignorant about my own genetic status. But if I have PKD, there’s not much I can do about it. There is no drug or diet that keeps PKD from progressing, eventually, to kidney failure. Nor is there any way of knowing whether that progression would end relatively early, in my 40s, or relatively late, in my 80s, when I might already have died of something else. And since I had my children before I even knew PKD ran in the family, no childbearing decisions remain for me based on whether I do or do not carry a damaged gene.

 

In addition, knowing about my PKD status might, under the current system, make me uninsurable. Not only would my knowledge turn PKD into a “pre-existing condition” – as it would not be if I didn’t know about it – for health insurance, but it would make it virtually impossible to find the kind of life insurance and disability insurance I would need. And I might become not only uninsurable but unemployable, too, if a new employer were to decide I was unlikely to offer a good return on his training investment.

 

Seems simple, right? Just decide not to know. But here’s the rub: my daughter does want to know whether she carries the PKD gene. And since she just passed her 18th birthday, she is free to find out. Hers is a different situation: she is now making plans for the rest of her life, and she wants her decisions to be as informed as possible. She is entitled to that choice, and the matter is really one that should be entirely between her and her physician.

 

Except for one thing. If my daughter did get tested, and did have the PKD gene, then I would by default have found out something I had already decided I did not want to know: that I had the gene, too, since the only way she could have gotten it was from me.

 

Our own little family saga is played out thousands of times a day at genetic counseling clinics and doctors’ offices across the country. Each of us carries at least a few damaged genes. Usually, unlike the PKD gene, bad genes are recessive, meaning we usually don’t find out we have them unless they cause problems in our children. But once genetic testing becomes widespread, we will all be able to learn our own secret weaknesses. And sometimes, as would happen to me if my daughter tested positive, we will learn about them against our will.”)(emphasis added).

 

Polycystic Kidney Disease Support Group, http://www.dailystrength.org/c/Polycystic_Kidney_Disease_PKD/advice/11212820-2-s-testing-and-popping (2013) (“Hello All,

 

I recently found out that my father has PKD, and he said I should get tested for it. But when I talked to my doctor she recommended not getting tested since there is nothing that can be done if I DO have it, and I would then be considered to have a pre-existing condition and could be denied insurance coverage for it if I should ever have to switch insurers. It has been more than a year and I haven’t gotten tested. But lately I’ve been waking up in the mornings with minor back pain in the kidney areas, and I sometimes feel a strange popping sensation in the kidney area. The popping sensation is not painful, but annoying. If I press my hand into the place I am having the sensation (lower back ribs) I can feel a sort of slight twitching between or under the ribs. I know this sounds strange, but it makes me worry about what might be happening with my kidneys, and I just wonder if any of you may have experienced anything similar with PKD.

 

Thanks so much for responding!

Chris

Posted on 01/01/11, 10:43 am

Response In Pertinent Part

“Your doctor gave you good advice on not getting tested. The pre-existing condition situation is a cruel one and more than one of us has been caught up in that mess and been denied not only decent healthy insurance, but also life insurance and some employment (PKD as a pre-existing condition renders you ineligible for military service, public health service (same medical criteria as the military), and many police and fire fighters if it’s known up front”).

 

http://www.cms.gov/MedicareGenInfo/ (2010) (General information about healthcare coverage under Medicare for kidney patients);

 

Health Insurance: Paying For Pre-Existing Conditions, http://www.investopedia.com/articles/pf/09/covering-medical-costs.asp#12821421892212&close (2010)(Article that discusses the ACA and pre-exiting condition and 3 scenarios where one could lose their health insurance);

 

 

 

We Know Health Care is Personal. It’s Your Care, http://www.whitehouse.gov/mycare (2013) (White House Website) (“Two years ago, President Obama signed the Affordable Care Act – health reform – into law. The President’s health care law gives hard working, middle class families the security they deserve. The new law forces insurance companies to play by the rules, prohibiting them from dropping your coverage if you get sick, billing you into bankruptcy because of a lifetime limit, or, soon, discriminating against anyone with a pre-existing condition.

As the provisions in the law start to take effect, millions of Americans are seeing a noticeable difference in the cost and quality of their health care.

Here are just a few examples of ways health care reform is having an impact on your care.

•           Coverage for young adults. Young adults are allowed to remain on their parent’s plan until their 26th birthday. Up to 2.5 million young adults through age 26 have gained coverage on their parent’s plan.

•           Protection for seniors. The law ensures that we continue to protect seniors’ guaranteed Medicare benefits. In 2011, 32.5 million Medicare beneficiaries received free preventive services like mammograms and colonoscopies and 3.6 million Medicare beneficiaries received a discount on their prescription drugs that averaged over $600.

•           Pre-existing condition coverage. About 50,000 uninsured people with pre-existing conditions have gained coverage through the Pre-existing Condition Insurance Plan, including people with cancer, hemophilia, and other diseases that blocked them out of the health insurance system.

•           Patients’ Bill of Rights. The Patient’s Bill of Rights will put an end to some of the worst insurance abuses and puts consumers, not insurance companies, in control of their health care. For example, insurance companies will no longer be able to place lifetime limits on coverage, they will be required to cover preventive services like cancer screenings without a copay and they must spend more of your premium dollars on health care costs not administrative costs.”) (emphasis added);

 

 

People with Disabilities, http://www.whitehouse.gov/healthreform/relief-for-americans-and-businesses#healthcare-menu (2013). (“Ending Insurance Company Abuses: Thanks to the Affordable Care Act, insurers can no longer put a lifetime cap on how much care they will pay for if you get sick, or cancel your coverage when you make a mistake on your paperwork.

Ending Discrimination against Pre-Existing Conditions: Under the new health care law, plans are no longer allowed to deny or exclude coverage to any child under age 19 based on a pre-existing condition, including a disability. Starting in 2014, these same plans won’t be able to discriminate against anyone with a pre-existing condition.

Expanding Affordable Coverage: If you have been uninsured for six months and can’t buy private insurance because of a pre-existing condition, you can join the Pre-Existing Condition Insurance Plan. To find out about plans available in your State, please visit www.pcip.gov.”);

 

Helpful Tips,

http://www.cms.gov/HealthInsReformforConsume/Downloads/HIPAA_Helpful_Tips_Rev_1.pdf (2010)  (“As discussed earlier in this preamble, section 1201 of the Affordable Care Act adds a new PHS Act section 2704, which amends the HIPAA rules relating to preexisting condition exclusions to provide that a group health plan and a health insurance issuer offering group or individual health insurance coverage may not impose any preexisting condition exclusion. The HIPAA rules (in effect prior to the effective date of these amendments) apply only to group health plans and group health insurance coverage, and permit limited exclusions of coverage based on a preexisting condition under certain circumstances. The Affordable Care Act and these interim final regulations prohibit any preexisting condition exclusions imposed by group health plans or group health insurance coverage and extends this protection to individual health insurance coverage. This prohibition generally is effective with respect to plan years (in the individual market, policy years) beginning on or after January 1, 2014, but for enrollees who are under 19 years of age, this prohibition becomes effective for plan years (in the individual market, policy years) beginning on or after September 23, 2010.”) Understanding the Reforms, Consumer Rights and Protection, http://www.whitehouse.gov/healthreform/healthcare-overview#healthcare-menu (2013) (“End to Pre-Existing Condition Discrimination: Insurance companies can no longer deny coverage to children because of a pre-existing condition like asthma and diabetes, providing peace of mind for parents of the more than 17.6 million children with pre-existing conditions. Starting in 2014, no American can be discriminated against due to a pre-existing condition.

End to Limits on Care: In the past, some people with cancer or other chronic illnesses ran out of insurance coverage because their health care expenses reached a dollar limit imposed by their insurance company. Under the health care law, insurers can no longer impose lifetime dollar limits on essential health benefits and annual limits are being phased out by 2014. More than 105 million Americans no longer have lifetime limits thanks to the new law.

End to Coverage Cancellations: Insurance companies can no longer drop your coverage when you get sick due to a mistake you made on your application.”)

Health Reform in Action

 

Pre-Existing Condition Insurance Plan (PCIP) http://www.healthcare.gov/law/provisions/preexisting/index.html(2013); (Discussion of PCIP law);

 

People with Disabilities, http://www.whitehouse.gov/healthreform/relief-for-americans-and-businesses#healthcare-menu (2013). (Ending Insurance Company Abuses: Thanks to the Affordable Care Act, insurers can no longer put a lifetime cap on how much care they will pay for if you get sick, or cancel your coverage when you make a mistake on your paperwork.

Ending Discrimination against Pre-Existing Conditions: Under the new health care law, plans are no longer allowed to deny or exclude coverage to any child under age 19 based on a pre-existing condition, including a disability. Starting in 2014, these same plans won’t be able to discriminate against anyone with a pre-existing condition.

Expanding Affordable Coverage: If you have been uninsured for six months and can’t buy private insurance because of a pre-existing condition, you can join the Pre-Existing Condition Insurance Plan. To find out about plans available in your State, please visit www.pcip.gov.”)

 

Pre-Existing Condition Insurance Plan – Notification, https://www.pcip.gov/ (2013) (“Beginning February 16, 2013, the federally-run Pre-Existing Condition Insurance Plan (PCIP) is suspending acceptance of new enrollment applications until further notice. State-based PCIPs may continue accepting enrollment applications through March 2, and will then suspend acceptance of new enrollment applications until further notice. PCIP will continue providing coverage to more than 100,000 people currently enrolled nationwide. We encourage you to visit http://finder.healthcare.gov Exit Disclaimer Icon to explore your other health care options.”)

 

 

PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012). (General discussion concerning PKD and forms of health insurance including the ACA and pre-existing conditions);

 

Webinar, What the Affordable Care Act Means to the PKD Community, https://www.youtube.com/watch?feature=player_embedded&v=9C5qiGVMtsI (December 14, 2012).(Video that discusses the impact of the ACA on PKD patients, including the new pre-existing conditions law);

 

 

Pre-Existing Condition Insurance Plan (PCIP) http://www.healthcare.gov/law/provisions/preexisting/index.html  (2013).( Discussion of the PCIP plan and the dates when effective);

 

A+ for Affordable Care Act, http://www.pkdwillnotbeatme.com/knowledge/a-for-the-affordable-care-act/ (2012) (“I am not a political junkie and I surely did not read the whole Affordable Care Act, but the one item for which I am very grateful is that I no longer have to fear being denied health coverage because I have a pre-existing condition. What a relief to know that I don’t have to hide this major component of my life– in which I have no control– from my employer and my health insurance provider. My heart is happy that those parents can now get their children tested and there will be no more waiting games, wondering if they have passed PKD on to their child.”);

 

Keefer, Video: Keeping a Positive Attitude with PKD, http://www.pkdcure.org/learn/multimedia/webinars/keeping-a-positive-attitude-with-pkd (2013); (videoblog that discusses pre-existing conditions and the effect of keeping people from being tested for PKD prior to the passage of the ACA);

 

Supreme Court Ruling a “Relief” for Local Family, http://www.sandiego6.com/news/local/Supreme-Court-Ruling-a-Relief-for-Local-Family-160794345.html# (2012) (“Local families with pre-existing conditions expressed relief on social media sites following the Supreme Court’s ruling to uphold the federal health care law.  Among them: Eric Ranaldi and his wife.

Ranaldi has polycystic kidney disease, a genetic disorder with no cure.

“There’s pain, there’s all sorts of different issues,” he said. “I have to take all sorts of medication to control my blood pressure, and eventually, I’m going to have to have a [kidney] transplant.”

Ranaldi has coverage from his employer, but he’s thinking about finding a new job. That means finding new health insurance with a pre-existing condition.

“The first thing in my mind is well, are you going to have medical coverage? Am I going to have medical insurance? Are our children going to have medical insurance?” his wife, Rabecca, said.

Starting in 2014, the federal act will make it illegal for insurers to deny coverage because of a pre-existing condition, or set an unrealistic rate for people with one.

The law has already eliminated lifetime caps on coverage, and will take away annual caps in 2014. That means if Eric needs a kidney transplant, he won’t be told he’s already reached his limit.”);

 

Healthcare reforms, PKD, and the Affordable Care Act, http://www.dailystrength.org/c/Polycystic_Kidney_Disease_PKD/forum/9576515-pkd-foundation-health-care (2010) (“SUPPORT FOR PKD PATIENTS,

Provision: Immediate access to insurance for uninsured individuals with a pre-existing condition through high- risk pools

What It Means for You: Helps patients, who do not have health insurance because of a pre-existing condition gain access to health insurance Effective Date: Immediate (Within 90 days)

Citation: P.L. 111-148; Title I; Sec. 1101

 

Provision: Prohibits pre-existing condition exclusions

What It Means for You: Prevents health insurance plans from not covering services, procedures or medications related to your pre-existing condition

Effective Date: January 1, 2014

Citation: P.L. 111-148; Title I; Sec. 2704.

 

Provision: Prohibits discrimination against individual participants and beneficiaries based on health status (includes protections against use of genetic information)

What It Means for You: Helps protect people with genetic diseases, such as PKD, from discrimination in premiums and types of health insurance plans available for purchase

Effective Date: January 1, 2014

Citation: P.L. 111-148; Title I; Sec. 2705.

 

Provision: Provides coverage for individuals participating in approved clinical trials

What It Means for You: Ensures your health insurance will still pay for services, procedures and medications related to an approved clinical trial

Effective Date: Immediate (Within 90 days)

Citation: P.L. 111-148; Title I; Sec. 2709.

Provision: Eliminates lifetime or annual benefit caps

What It Means for You:: Removes arbitrary annual and lifetime benefit limits that insurance companies can impose

Effective Date: Within six months; (There are exceptions.)

Citation: P.L. 111-148; Title I; Sec. 2711.

 

Provision: Closing the Medicare prescription drug (Part D) coverage gap or donut hole

What It Means for You: If you are currently enrolled in a Medicare Part D plan and you hit the coverage gap in 2010, Medicare will provide a $250 rebate. There will be a phase down of the Part D coverage gap from 100 percent to 25 percent by 2020.

Effective Date: Rebate in 2010; Phase down through 2020

Citation: H.R. 4872; Title I; Sec. 1101.“)(Discussion of relevant provisions of the ACA that effect the law concerning pre-existing conditions)’

 

 

Kidney Disease by the numbers, Flyer distributed at Washington, DC advocacy training session, March 13, 2013 (2013) (Listing of numbers including the number of people on dialysis, people who obtain transplants and the costs associated with each);

 

University of Cincinnati’s Transplant page, http://universityhospital.uchealth.com/services/transplant/(2013). (Comparison of life expectancy of a dialysis patient and of a transplanted kidney patient);

 

Sack, In Discarding of Kidneys, System Reveals Its Flaws, http://www.nytimes.com/2012/09/20/health/transplant-experts-blame-allocation-system-for-discarding-kidneys.html?pagewanted=all&_r=0 (2013). (In pertinent part discusses the life expectancy of a dialysis patient);

 

Christine S. Rizk, JD, and Sanjiv N. Singh, MD, JD, Implications of the Affordable Care Act for Kidney Transplantation, http://virtualmentor.ama-assn.org/2012/03/pfor3-1203.html (2012).(Discusses universal health care and it’s effects on kidney transplant patients);

 

Rosenbaum, The Patient Protection and Affordable Care Act: Implications for Public Health Policy and Practice, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3001814/ (2011)(“ The Affordable Care Act is a watershed in U.S. public health policy. Through a series of extensions of, and revisions to, the multiple laws that together comprise the federal legal framework for the U.S. health-care system, the Act establishes the basic legal protections that until now have been absent: a near-universal guarantee of access to affordable health insurance coverage, from birth through retirement. When fully implemented, the Act will cut the number of uninsured Americans by more than half. The law will result in health insurance coverage for about 94% of the American population, reducing the uninsured by 31 million people, and increasing Medicaid enrollment by 15 million beneficiaries. Approximately 24 million people are expected to remain without coverage.”)(emphasis added);

 

Vestal, After Expanding Coverage, Health Care Pioneer Seeks to Tame Costs, http://www.pewstates.org/projects/stateline/headlines/after-expanding-coverage-health-care-pioneer-seeks-to-tame-costs-85899466678 (2013)(“ Seven years after its groundbreaking health reforms, which became the model for the Affordable Care Act, Massachusetts boasts an uninsured rate of less than 2 percent, compared to a national average of 16 percent”);

 

Will States Allow Obamacare to Bring Universal Coverage? http://blogs.lawyers.com/2013/02/states-obamacare-universal-coverage/ (2013) (“One of the primary goals of the Patient Protection and Affordable Care Act, or Obamacare,  is to make insurance available to as many consumers are possible. Now, as the law gears up toward full implementation in 2014, states are grappling with how to balance near-universal care with protecting their pocketbooks.

 

Close to 50 million people lacked health insurance before the law’s passage, with tens of millions more who had insurance that was inadequate to cover their needs. The ACA aimed at extending insurance to more than 33 million more people through a mixture of Medicare expansion, tax credits to help pay for private insurance and a series of reforms that force insurers to accept most applicants.”)

 

National Kidney and Urologic Diseases

Information Clearinghouse (NKUDIC), http://kidney.niddk.nih.gov/kudiseases/pubs/polycystic/ (2013) (“In the United States, about 600,000 people have PKD, and cystic disease is the fourth leading cause of kidney failure.”);

 

Home dialysis discussion forum, what’s the normal life expectancy of a dialysis patient, http://forums.homedialysis.org/threads/510-whats-the-normal-life-expectancy-of-a-dialysis-patient(2005); (Discusses the life expectancy of a dialysis patient);

 

Kidney Dialysis Life Expectancy, http://www.buzzle.com/articles/kidney-dialysis-life-expectancy.html (2010) (“The normal life expectancy of a patient is 3-5 years. It is assumed that if a person is undergoing the treatment for chronic kidney diseases, then the end is near. This is because only someone with the most advanced stage (stage 5) of this disease will be put under the treatment. This stage is also known as End Stage Renal Disease (ESRD) and recovering from this is virtually unheard of. The mortality rate for patients suffering from ESRD is 22% annually, and this effectively means that surviving beyond 5 years is going to be highly unlikely.”);

 

Kidney Dialysis Life Expectancy, http://www.kidneycoach.com/1389/kidney-dialysis-life-expectancy-kidney-failure/(2013) (“The average life expectancy of someone receiving kidney dialysis is 4.25 years.

• The 10 year kidney dialysis life expectancy is 23%.”)

 

 

Goldman, Kidney-transplant patients celebrate unprecedented freedom from immunosuppressant drugs, http://med.stanford.edu/ism/2012/march/kidney-0307.html (2012) (“On average, transplant recipients have twice the life expectancy of people on chronic dialysis,” said Scandling, a professor of medicine who is medical director of Stanford’s adult kidney and pancreas transplantation program);

 

 

The Benefits of Transplant versus Dialysis, http://www.bidmc.org/Centers-and-Departments/Departments/Transplant-Institute/Kidney/The-Benefits-of-Transplant-versus-Dialysis.aspx (2013) (“On the other hand, patients who receive a kidney transplant typically live longer than those who stay on dialysis. A living donor kidney functions, on average, 12 to 20 years, and a deceased donor kidney from 8 to 12 years.”);

 

Booklet from Indiana University Health, Kidney Transplant Education for the Pretransplant Patient (2013); (Discusses the life expectancy of kidney transplant patients);

 

Shorter wait means longer life for kidney transplant candidates, http://news.ufl.edu/2009/02/18/kidney-transplant/ (2013) (“Kidney transplantation doubles life expectancy compared with dialysis treatment.”);

 

The Benefits of Transplant versus Dialysis, http://www.bidmc.org/Centers-and-Departments/Departments/Transplant-Institute/Kidney/The-Benefits-of-Transplant-versus-Dialysis.aspx (2013). (Discusses the benefits of transplant over dialysis and the difference in life expectancy between dialysis patients and transplant patients).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  1. IV.           PROBLEM ANALYSIS:

 

 

ISSUE: HOW DOES THE AFFORDABLE CARE ACT ADDRESS THE ISSUE OF NO HEALTH INSURANCE COVERAGE FOR PRE-EXISTING CONDITIONS LIKE POLYCYSTIC KIDNEY DISEASE?

  1. 1.    WHAT IS POLYCYSTIC KIDNEY DISEASE (PKD)?

Polycystic kidney disease (PKD) is an inherited disorder in which clusters of noncancerous, fluid-filled sacs (cysts)[xxiv] develop within the kidneys. The cysts vary in size and, as they accumulate more fluid, they can grow very large.[xxv]  They vary in size and as they accumulate more fluid can grow extremely large.[xxvi] Normally, a kidney weighs less than one-third of a pound (approximately three-quarters of a kilogram), while a kidney containing numerous cysts can weigh as much as 20 to 30 pounds (9.1 to 13.6 kilograms). [xxvii]

PKD is not contagious. It is a genetic disease meaning you have it in your chromosomes.[xxviii]   Abnormal genes cause polycystic kidney disease, where the genetic defects and the disease run in the family.[xxix] There are two types of polycystic kidney disease, caused by different genetic flaws:

•    Autosomal dominant polycystic kidney disease (ADPKD). Signs and symptoms of ADPKD frequently develop between the ages of 30 and 40.  Both adults and children can inherit this type of PKD, but it is more frequently found in adults. Only one parent needs to have the disease in order for it to pass along to the children. If one parent has ADPKD, each child has a 50 percent chance of getting the disease. This form accounts for about 90 percent of cases of polycystic kidney disease.[xxx]

•    Autosomal recessive polycystic kidney disease (ARPKD). This type is far less common than is ADPKD. The signs and symptoms often appear shortly after birth. Sometimes, symptoms don’t appear until later in childhood or during adolescence. Both parents must have abnormal genes to pass on this form of the disease. If both parents carry a gene for this disorder, each child has a 25 percent chance of getting the disease.[xxxi]

In some cases, people with ADPKD have no known family history of the disease.[xxxii] However, it’s more likely that someone in the affected person’s family actually did have the disease, but didn’t show signs or symptoms before dying of other causes.[xxxiii]

Polycystic kidney disease symptoms may include: (1) High blood pressure; (2) Back or side pain; (3) Headache; (4) Increase in the size of your abdomen; (5) Blood in your urine; (6) Frequent urination;               (7) Kidney stones; (8)Kidney failure; and(9)Urinary tract or kidney infections.[xxxiv]  A common complication of polycystic kidney disease is high blood pressure, which in turn can lead to kidney failure in PKD patients.[xxxv]

  1. a.     THE ONSET OF PKD IS VERY SLOW IN DEVELOPING, SOMETIMES TAKING YEARS BEFORE IT IS DIAGNOSED

One of the more insidious aspects of PKD is that the onset is very slow and slow to manifest itself in symptoms indicating much more than high blood pressure and back pain.[xxxvi] It’s not uncommon for people to have polycystic kidney disease for years without developing signs or symptoms and without knowing they have the disease. [xxxvii] The signs and symptoms of polycystic kidney disease, which include high blood pressure[xxxviii], an increase in the size of your abdomen,[xxxix] blood in your urine[xl], back or side pain[xli], urinary tract infections[xlii], growth in kidney size[xliii] or kidney stones[xliv], frequently imitate other health problems[xlv] and can literally go undetected for years.[xlvi]  This can complicate things for the PKD patient because invariably early symptoms are reviewed and treated by a family physician and the underlying cause goes undiagnosed, frequently until kidneys actual fail.[xlvii]

Another important related issue is whether or not you can prevent PKD or prevent passing it to your children?  Once you have it, you cannot prevent it, because it is part of your gene pool.  The only way to absolutely prevent passing it to your children is to not have children.[xlviii]

  1. b.    IS THERE A WAY TO STOP OR SLOW THE DEVELOPMENT OF PKD?

You can stop or the more likely scenario is that you can slow the progression of PKD for a time.[xlix]  There are several things patients can do to attempt to slow the onset of renal failure: (1) Control blood pressure. The current goal blood pressure for an individual with ADPKD is less than 130/80. The optimal choice of blood pressure medications remains uncertain but many in the nephrology field believe that ACE (Angiotensin Converting Enzyme inhibitor) or ARB (Angiotensin Receptor Blockers) are good medications to begin with;  (2) Control cardiovascular risk factors by maintaining a healthy diet, maintaining healthy body weight, exercising regularly, avoiding smoking, added salt on foods, avoid caffeine, and red meat;   (3) As with any other kind of kidney disease, avoid medications that could possibly injure the kidneys. PKD patients are advised to avoid all of the NSAID (Non-Steroidal Anti Inflammatory Agents containing Ibuprofen) – aspirin like agents, Advil, Aleve, Naproxen – except in rare circumstances and under a doctor’s supervision.[l]

  1. c.     METHODS OF DIAGNOSIS OF PKD

The tests and methods of diagnosis are illustrative of just how difficult it is to detect PKD.  Several diagnostic methods are utilized to detect the size and number of kidney cysts as well as to evaluate the amount of healthy kidney tissue:  “(1) Ultrasound examination. In this common diagnostic method, a wand-like device called a transducer is placed on your body. It emits inaudible sound waves that are reflected back to the transducer — like sonar. A computer translates the reflected sound waves into images of your kidneys; (2) Computerized tomography (CT) scan. As you lie on a movable table, you’re guided into a big doughnut-shaped device that projects very thin X-ray beams through your body. Your doctor is able to see cross-sectional images of your kidneys; (3) Magnetic resonance imaging (MRI) scan. As you lie inside a large cylinder, magnetic fields and radio waves generate cross-sectional views of your kidneys.[li]”  Cysts are not normally visible on a simple x-ray.  [lii]

  1. d.    TREATMENT AND MEDICATIONS IN AN ATTEMPT TO AVOID KIDNEY FAILURE SECONDARY TO POLYCYSTIC KIDNEY DISEASE

Statistics show that End Stage Renal Failure occurs in only 50% of PKD patients by the time they reach 60.[liii]  To attempt to slow the progress of PKD, you must attempt to keep your kidneys as healthy as possible. One of the most important ways you can protect your kidneys is to manage your blood pressure. Here are some tips for keeping your blood pressure in check:

•    Take the blood pressure medications prescribed by your doctor as directed.

•    Eat a low-salt diet containing plenty of fruits, vegetables and whole grains.

•    Maintain a healthy weight. Ask your doctor what the right weight is for you.

•    Quit smoking, if you’re a smoker.[liv]

 

 

  1. e.      CAN YOU MANAGE YOUR SYMPTOMS OF POLYCYSTIC KIDNEY DISEASE

Treating polycystic kidney disease involves resolving the following symptoms:  (1) High blood pressure- by controlling high blood pressure, one may delay the progression of the disease and slow further kidney damage. Combining a low-sodium, low-fat diet that’s moderate in protein and calorie content with not smoking, increasing exercise and reducing stress may help control high blood pressure. Where medications are required, angiotensin-converting enzyme (ACE) inhibitors may be used to control high blood pressure in people with polycystic kidney disease; (2) Pain- Chronic pain, in your back or your side, is a common symptom of polycystic kidney disease. Usually, the pain is mild and you can control it with over-the-counter medications containing acetaminophen. For some people, however, the pain is more severe and constant. In rare cases, your doctor may recommend surgery to remove cysts if they’re large enough to cause pressure and pain; (3) Complications of cysts- it is rare but, when kidney cysts are causing severe pain or obstructing other organs or blood vessels, you may need to undergo surgery to drain the cysts; (4) Bladder or kidney infections. Prompt treatment of infections with antibiotics is necessary to prevent kidney damage; (5) Blood in the urine- drink lots of fluids as soon as you notice blood in your urine, in order to dilute the urine. Dilution may help prevent obstructive clots from forming in your urinary tract. Bed rest also may help slow the bleeding; (6) Kidney failure- If your kidneys lose their ability to remove wastes and extra fluids from your blood, you’ll eventually need either dialysis or a kidney transplant; (7) Liver cysts- Nonsurgical management of liver cysts would include an avoidance of hormone replacement therapy. Other options in rare cases include drainage of symptomatic cysts if they’re not too numerous, partial removal of the liver or even liver transplantation; (8) Aneurysms- If you have polycystic kidney disease and a family history of ruptured brain (intracranial) aneurysms, your doctor may recommend regular screening for intracranial aneurysms. If an aneurysm is discovered, surgical clipping of the aneurysm to reduce the risk of bleeding may be an option, depending on its size. Nonsurgical treatment of small aneurysms may involve controlling high blood pressure and high blood cholesterol, as well as quitting smoking.[lv]

  1. WHAT HAPPENS WHEN YOU SUFFER FROM RENAL FAILURE?

When the kidneys no longer remove waste from the blood, toxins build up causing symptoms such as:  (1) Not feeling well; (2) Lack of energy; (3) Nausea; (4)Vomiting; (5)Difficulty breathing; (6)Weight loss; (7) Difficulty concentrating; (8)Depression; (9)Fatigue; (10)Poor appetite; (11) Nausea/vomiting; (12) Trouble concentrating (in severe cases, confusion); (13) Dry, itchy skin, especially if phosphate intake is high; (14)   Funny taste in your mouth; food tastes funny, metallic; (15) Muscle cramps at night; (16) Swelling in feet and ankles.[lvi]

Dialysis attempts to replace the function of your kidneys by removing excess fluid and toxins from the blood.[lvii] There are different types of dialysis including hemodialysis and peritoneal dialysis (PD).[lviii] Transplantation is the only other solution as there is no cure for PKD.[lix] Transplantation is not a cure for PKD, but your PKD will not be transmitted to your new kidney.[lx] There are also complications that affect other parts of your body when your kidneys fail.[lxi]

 


 

2.  WHAT IS A PRE-EXISTING CONDITION FOR HEALTH INSURANCE PURPOSES?

The Affordable Care Act (ACA) was enacted in March 2010 through the Patient Protection and Affordable Care Act and then amended by the Health Care and Education Reconciliation Act.[lxii]  The law includes many elements that will become active over the course of several years.  They are designed to expand health care coverage and control the growth of health care costs. Some of the major provisions in the legislation are:

(1) Beginning in 2014, an “individual mandate” requirement that most Americans purchase health insurance, either on their own or through their employer, or face tax penalties; (2) Expanded eligibility for Medicaid;

(3) New tax credits and subsidies to help individuals and small businesses purchase health insurance; (4) State-based health insurances exchanges to offer plans (which meet minimum benefits requirements)  to individuals and small businesses; (5) A ban on the denial of coverage based on pre-existing conditions ; (6) Limits on annual increases in Medicare payment rates for hospitals; (7) Creation of the Independent Payment Advisory Board which will provide recommendations to control Medicare costs; (8) Beginning in 2018, an excise tax on high-cost health insurance plans (Cadillac Plans);

(9) Funding for projects that are designed to reduce overall health expenditures (such as electronic health records, accountable care organizations, and more).(emphasis added). [lxiii]

The term pre-existing condition refers to a disease, condition or disability that occurs before a set of health benefits begins.[lxiv]  Most insurance companies define a pre-existing condition in one of two ways:

1) A pre-existing condition is any condition for which the patient has already received medical advice or treatment prior to enrollment in a new medical insurance plan; or,

2) A pre-existing condition is anything for which symptoms were present and a prudent person would have sought treatment for. [lxv]

Current federal and state regulations (which vary from state to state) allow health insurance providers to carry pre-existing condition exclusions on their policies[lxvi].  The exclusion could be a mandatory waiting period before the insurance policy will allow benefits that cover the condition to begin or that the condition itself is fully excluded from coverage under the plan.[lxvii]

Under the ACA, insurers will be banned from rejecting applicants based on health status once the exchanges are operating in 2014.[lxviii] Currently, children with pre-existing conditions cannot be denied coverage.[lxix]

 

 

3.  IS PKD CONSIDERED TO BE A PRE-EXISTING CONDITION?

It is very likely that a patient’s PKD will be considered a pre-existing condition.  By definition, PKD is a disease that is present before enrollment as it technically is present although may not be detectable at birth, and due to the potential for kidney failure or death, a reasonably prudent person would have sought treatment for the condition.[lxx]  Theoretically, PKD is a pre-existing condition in every case of its existence.  If you have been receiving treatment for your PKD or chronic symptoms related to PKD such as hypertension, then PKD and those symptoms may be considered a pre-existing condition, and you could be denied coverage.[lxxi] It is important to point out that if you have been receiving treatment for your PKD or chronic symptoms related to PKD such as hypertension, then PKD and those symptoms may be considered a pre-existing condition, and you could be denied coverage until state exchanges begin in 2014.[lxxii]  Each health insurance provider and plan is different, so only by contacting them could one learn of details.

Some people try to keep their PKD diagnoses secrete or they just don’t get tested, feeling that what they don’t know can’t hurt them.  As the article from Investopedia points out there are 3 common scenarios where this becomes impossible:

“Scenario 1: Changing Jobs

The first involves changing jobs. If you were covered under your prior employer’s healthcare plan and take a job with a new employer, your new employer’s health insurance plan can impose a six-month “look back” period. During that time, you must have had “creditable coverage” with no breaks in excess of 63 days in order to get immediate treatment for a pre-existing condition. Creditable coverage includes group healthcare plans, private medical insurance, COBRA coverage, Medicare or Medicaid.

 

Calculations of creditable coverage are used to determine whether immediate treatment of pre-existing conditions will be available and how long patients must wait if they are not immediately eligible. If, for example, you worked for your prior employer for 15 months and had continuous healthcare coverage and then moved immediately to the new employer, you would be given credit for 15 months of prior coverage. Any pre-existing conditions would be eligible for immediate treatment.

 

If, on the other hand, you worked for the prior employer for 15 months, had healthcare coverage for 11 months and then stopped coverage for three months before resuming it for one month, only the last month of coverage would be creditable because the break in coverage was longer than 63 days. Under this scenario, the new employer’s healthcare coverage could refuse treatment for pre-existing conditions for a period of 11 months. Some employers further complicate the issue by breaking down healthcare coverage into five additional categories: mental health, substance abuse, prescription drugs, dental and vision. Each category of care is then subject to the six-month look-back period.

 

If you have not had healthcare coverage in the past 12 months, your new employer’s healthcare plan can refuse treatment for pre-existing conditions for up to one year. If you do not enroll in the new plan as soon as you are eligible to do so, late enrollment can extend the delay in coverage to 18 months.

 

Scenario 2: Purchasing Private Healthcare Insurance

In the second scenario, if you had employer-sponsored healthcare coverage and wanted to purchase private healthcare insurance, HIPAA guarantees that the new insurer will cover pre-existing conditions provided you have had continuous healthcare coverage with no breaks longer than 63 days during the past 18 months. (For more on private insurance, read Buying Private Health Insurance.)

 

Scenario 3: Switching Insurance Providers

Under the third scenario, if you had an insurance plan that you purchased on your own that is not affiliated with your employer, you may have trouble finding coverage for a pre-existing treatment if you wish to switch insurance providers. Private insurance may be able look back into your medical records and decline to cover you even if the condition that you had was treated many years ago. Keep in mind that insurers make a profit when their customers don’t get sick, so taking on a risky customer is not in their best financial interests. With this in mind, if you are currently being treated for a medical condition or had a serious condition in the past, finding a new insurer may be a real challenge.[lxxiii]

 

There is some protection prior to the ACA, in the form of the Genetic Information Non-Discrimination Act (GINA)[lxxiv].  Under GINA, genetic information is protected and cannot be deemed a pre-existing condition.[lxxv]  For example, if you are found to have the PKD gene but PKD has not yet developed, you cannot be denied coverage if there is no diagnosis of the disease[lxxvi].  Between the date the ACA was enacted and February 16, 2013, if you have a pre-existing condition and have been uninsured for more than six months, the Affordable Care Act has established more robust state high-risk pools called Pre-existing Condition Insurance Plans, which may offer some relief.[lxxvii]  However as of February 16, 2013, the federally-run Pre-Existing Condition Insurance Plan (PCIP) suspended acceptance of new enrollment applications until further notice[lxxviii]. State-based PCIPs may continue accepting enrollment applications through March 2, and will then suspend acceptance of new enrollment applications until further notice.  PCIP will continue providing coverage to more than 100,000 people currently enrolled nationwide.[lxxix]  This was done to make way for the ACA’s pre-existing condition plan which comes into effect in 2014.[lxxx]

For patients with kidney disease or kidney failure, denial of coverage for pre-existing conditions is currently prohibited; Children can no longer be denied health care coverage because of a pre-existing condition; and Pre-existing condition plans must offer comprehensive health coverage.[lxxxi]

  1. 4.    HOW DOES THE AFFORDABLE CARE ACT (ACA) ADDRESS THE ISSUE OF PRE-EXISTING CONDITIONS AND END STAGE RENAL DISEASE?

Under the ACA, not insuring someone for having pre-existing conditions is banned.[lxxxii] Insurers will not only be barred from rejecting applicants based on health status in 2014, they cannot drop you for getting sick and they cannot raise your rates if you are diagnosed with PKD or impose pre-existing exclusions.[lxxxiii] Starting next year, the Affordable Care Act guarantees that all Americans, regardless of their health status or pre-existing conditions, they will finally have access to quality, affordable coverage.  People will be able to apply for affordable health insurance coverage choices in Health Insurance Marketplaces when open enrollment begins on October 1. The Health Insurance Marketplace will offer a choice of quality, affordable health plans. [lxxxiv]

  1. V.             POSSIBLE SOLUTIONS:

As we have seen there are 3 possible solutions to the pre-existing condition problem posed by PKD.  First, under the Genetic Information Non-Discrimination Act (GINA), [lxxxv]  genetic information is protected and cannot be deemed a pre-existing condition.[lxxxvi]  For example, if you are found to have the PKD gene but PKD has not yet developed, you cannot be denied coverage if there is no diagnosis of the disease[lxxxvii].  Secondly, between the date of enactment of the ACA and February 16, 2013, if you have a pre-existing condition and have been uninsured for more than six months, the Affordable Care Act has established more robust state high-risk pools called Pre-existing Condition Insurance Plans, which may offer some relief.[lxxxviii]  However as of February 16, 2013, the federally-run Pre-Existing Condition Insurance Plan (PCIP) suspended acceptance of new enrollment applications until further notice. State-based PCIPs may continue accepting enrollment applications through March 2, and will then suspend acceptance of new enrollment applications until further notice.  PCIP will continue providing coverage to more than 100,000 people currently enrolled nationwide.[lxxxix]  This was done to make way for the ACA’s pre-existing condition plan which comes into effect in 2014.[xc]  Third and finally, when the Exchanges under the ACA come into existence in 2014, insurers will no longer be able to exclude someone for having a pre-existing condition like PKD from coverage, or put a pre-existing condition clause in their contracts, or raise rates or drop coverage when you become diagnosed with PKD.[xci]

 

 

 

VI. SOLUTION AND ITS IMPLEMENTATION:

As we have seen the 3 solutions to the issue of the pre-existing exclusion and the innate problem of PKD are interrelated.  The question remains why insure someone that you know will inevitably file a claim that could payout for years and be costly?  According to the National Kidney Fund, 26 million American Adults are estimated to have chronic kidney disease (CKD).[xcii] 2,492,040 Medicare patients are estimated to have CKD.[xciii]  594, 374 Americans have irreversible kidney failure, or end-stage renal disease (ESRD), and require dialysis or a kidney transplant to survive.[xciv]  415,013 ESRD patients receive dialysis at least 3times a week, 4 hours at a time, to replace kidney function.[xcv]  179,631 Americans currently live with a functioning kidney transplant.[xcvi] 87, 460 people with ESRD die every year.[xcvii]  Last year 16,485 Americans received a kidney transplant, with an additional 95, 474 Americans currently on the waiting list.[xcviii] 19 people on that waiting list die every day while waiting for a transplant.[xcix] Last year, 4,720 people died while waiting for kidney transplants in the United States.[c]76.3% of new ESRD patients apply for Medicare.  The government costs will give us some idea of what future private healthcare insurance costs will be.  $28.4 billion is the annual cost of the Medicare ESRD program.[ci]  $41 billion is the annual Medicare cost to treat people with CKD, amounting to 22.5% of Medicare spending[cii].  The Medicare costs for a kidney transplant patient the first year including the transplant itself and the subsequent immunosuppressive drug coverage to prevent new kidney rejection is $124,643[ciii]. For a Medicare patient on dialysis, the annual cost is $86,316.[civ]  $24,612 is what Medicare spends for a transplant patient after the first year, almost exclusively for anti-rejection medications.[cv]

As we can see, the costs for either a dialysis patient or a transplant patient are staggering, and if you cover a PKD patient as we have seen, you have a 50%-50% of incurring these costs.  The answer as to why we must do this is ethical as well as financial. If we truly want everyone to have coverage for healthcare as the ACA mandates, then we must include these people with kidney failure.[cvi] This is consistent with the basic mandates of the ACA and its desire for universal coverage and universal healthcare.[cvii]

 

 

 

 

 

 

  1. JUSTIFICATION:

From the last section, we have seen that there is a great need for government involvement and universal coverage for people that suffer from PKD.  Pulling the numbers together, PKD is a life-threatening, most commonly inherited disease that affects 600,000 Americans and 12.5 million children and adults worldwide.[cviii] We also know that by the time one with PKD reaches 60, more than half will develop kidney failure.[cix] The only available remedies for kidney failure that are currently available are dialysis and a kidney transplant, even though neither is a cure for PKD.[cx] PKD is one of four leading causes of kidney failure.[cxi] From the National Kidney Foundation, we know that the annual Medicare cost for a patient on dialysis is $86, 316 and for a transplant patient after the first year’s initial cost of $124, 643 is $24, 612 a year.[cxii] The average life expectancy of one on dialysis is 5-7 years.[cxiii] The average life expectancy of a transplanted kidney is on average twice that of one on dialysis, or approximately 10 years.[cxiv] A living donor kidney functions, on average, 12 to 20 years, and a deceased donor kidney from 8 to 12 years.[cxv] The cons against such coverage are obvious; the cost of covering someone on dialysis for 5-7 years at approximately $90,000 year per patient is high as is covering a transplant patient for medications for 10-12 years at a clip of approximately $25,000 a year.  However, if the goal is to cover everyone and to preserve life and to prevent illness, perhaps under the ACA, that number of 50% of affected PKD patients can rise by earlier diagnosis and taking better care of that patient earlier.  There is a proven track record that one who does follow the guidelines to prevent full-blown kidney failure can avoid ESRD or CKD.

 

 

 


  1. VIII.        

 

 

REFERENCES

 


[i] You may be wondering what led me to pick this topic and to write about it.  The things I am telling you in this paper, I have lived.  I inherited PKD from my family.  I was diagnosed at the age of 30 shortly after my Father had passed from complications of PKD including renal failure and congestive heart failure. I have lost in my family on my Father’s side a cousin, 2 aunts and 1 uncle from complications due to PKD. I have seen a Nephrologist every 6 months up until last year when my kidneys finally failed.  I am currently on dialysis and on 2 kidney transplant lists at Indiana University Health in Indianapolis and Rush Medical in Chicago. I have been lucky enough to be covered by private insurance.  Many of my dialysis clinic mates are covered by Medicare/Medicaid.  This issue of pre-existing conditions affects all of us and is pervasive in any PKD case.  I wanted to bring awareness and knowledge to those who may not be aware of this issue.

 

[ii] Polycystic Kidney Disease: An Overview, http://www.mayoclinic.org/polycystic-kidney-disease/?wt.srch=1&wt.mc_id=google&keyword=minnesota_polycystic_kidney_polycystic_kidney&campaign=mcr_kidney_transplant&state=national&kw=polycystic%20kidney&ad=17330200157&Network=Search&SiteTarget=&gclid=CMz64IeGlrYCFYpDMgod3j0ALA (Mayo Clinic Website)(2013); Polycystic Kidney Disease: What is polycystic kidney disease?, http://www.kidney.org/atoz/content/polycystic.cfm (National Kidney Foundation’s Website)(2013); Polycystic Kidney Disease:  Definition, Diagnosis and Prognosis, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245 (Mayo Clinic Website)(2013); ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Institute Website)(2013); Polycystic Kidney Disease, (PKD) http://www.medicinenet.com/polycystic_kidney_disease/article.htm (2013).

 

 

[iii] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Institute Website)(2013).

 

[iv] Polycystic Kidney Disease: What is polycystic kidney disease?, http://www.kidney.org/atoz/content/polycystic.cfm (National Kidney Foundation’s Website)(2013); Learn About PKD, The Science of PKD, http://www.pkdcure.org/learn/arpkd (2013).

 

[v] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions          “What do the kidneys do?

The kidneys are bean-shaped and about the size of a fist, located in the middle of the back, below the rib cage. The kidneys filter approximately 200 quarts of blood daily, reabsorb 98% of the filtrate and regulate the composition of the blood by removing waste and by other compounds.

Other kidney functions include the production of three hormones:

• Synthesis of Erythropoietin, a hormone which stimulates the production of red blood cells; • Synthesis of Renin which regulates blood pressure; and • Synthesis of Calcitriol, which is the active form of Vitamin D.”

See Also: Common Questions About PKD: What do Kidneys do? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013)

 

[vi] Polycystic Kidney Disease: An Overview, http://www.mayoclinic.org/polycystic-kidney-disease/?wt.srch=1&wt.mc_id=google&keyword=minnesota_polycystic_kidney_polycystic_kidney&campaign=mcr_kidney_transplant&state=national&kw=polycystic%20kidney&ad=17330200157&Network=Search&SiteTarget=&gclid=CMz64IeGlrYCFYpDMgod3j0ALA (Mayo Clinic Website)(2013); Polycystic Kidney Disease: What is polycystic kidney disease?, http://www.kidney.org/atoz/content/polycystic.cfm (National Kidney Foundation’s Website)(2013); Polycystic Kidney Disease:  Definition, Diagnosis and Prognosis, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245 (Mayo Clinic Website)(2013); ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Institute Website)(2013).  Patient information: Polycystic kidney disease (Beyond the Basics) http://www.uptodate.com/contents/polycystic-kidney-disease-beyond-the-basics (2013); Kidney Basics, http://www.kidneyfund.org/kidney-health/?gclid=CI6D9cuJlrYCFe8WMgod7CUA1Q (2013) (American Kidney Fund Website).

 

 

[vii] Polycystic Kidney Disease (PKD) FACT SHEET,  from the PKD Foundation, 4901 Main Street, Kansas City, MO 64112-2634(2013)

 

 

[viii] Id.

 

 

[ix] Id.

 

 

[x] Webinar, What the Affordable Care Act Means to the PKD Community, https://www.youtube.com/watch?feature=player_embedded&v=9C5qiGVMtsI (December 12, 2012)

 

[xi] Id.  PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012).

 

[xii] Id at 4.

 

[xiii] Kidney Failure: Choosing a Treatment that is Right for You, http://kidney.niddk.nih.gov/kudiseases/pubs/choosingtreatment/ (National Kidney and Urologic Diseases

Information Clearinghouse (NKUDIC) Website) (last updated September 20, 2010).

 

 

[xiv] Flyer obtained from the National Kidney Foundation’s NKF Government Relations Office, 5335 Wisconsin Avenue NW, Suite 300, Washington DC 20015, 202-244-7900 as part of Kidney Advocacy Training (March, 2013). (“The Medicare End Stage Renal Disease program pays for dialysis or transportation for over 600,000 kidney disease patients every year.”) See also: Immunosuppressive Drug Coverage, www.kidney.org/…/IMMUNOSUPPRESSIVE_DRUG_COVERGE_12.pdf (March, 2013)(same flyer in PDF format).

 

[xv] Affordable Care Act:  The New Health Care Law at Two Years: Health Insurance Coverage Before The ACA, www.whitehouse.gov/sites/default/files/uploads/careact.pdf (2013) (White House Website).

 

[xvi] PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 at 8  (From the PKD Foundation)(2012).

 

[xvii] Id at 9

 

[xviii] Id.. Pre-Existing Condition Insurance Plan, ACA and Pre-Existing Conditions, http://www.dirigohealth.maine.gov/Pages/pre_exist.html  (2013); Video, Pre-existing Conditions and the Affordable Care Act http://www.healthcare.gov/videos/2013/03/pre-existing-conditions-and-the-aca.html (2013); Affordable Care Act at 3: Consumer Protections, 3, http://www.healthcare.gov/blog/2013/03/anniversary-consumer-protections.html (2013); At Risk: Pre-Existing Conditions Could Affect 1 in 2 Americans:129 Million People Could Be Denied Affordable Coverage Without Health Reform, http://www.healthcare.gov/news/reports/preexisting.html (2013)(“ A “pre-existing condition” is a health condition that exists before someone applies for or enrolls in a new health insurance policy.  Insurers generally define what constitutes a pre-existing condition.  Some are obvious, like currently having heart disease or cancer.  Others are less so – such has having asthma or high blood pressure.  While insurers generally determine the presence of a pre-existing condition based on an applicant’s current health status, sometimes a healthy applicant can be deemed to have a pre-existing condition based on a past health problem or evidence of treatment for a particular condition.

 

Prior to the Affordable Care Act, in the vast majority of States, insurance companies in the individual and small group markets could deny coverage, charge higher premiums, and/or limit benefits to individuals based on pre-existing conditions.  A recent national survey found that 36 percent of those who tried to purchase health insurance directly from an insurance company in the individual insurance market were turned down, were charged more, or had a specific health problem excluded from their coverage.  Another survey found that 54 percent of people with individual market insurance were worried that their insurer would drop their coverage if they got really sick.”); At Risk: Pre-Existing Conditions, http://www.healthcare.gov/news/reports/preexisting.html (2013). Advocate:  PKD and Affordable Care Act: http://www.pkdcure.org/advocate/affordable-care-act (2013) (Power Point) (PKD Foundation Website); PKD And Health Insurance, www.pkdcure.org/document.doc?id=357 (2012) (PDF).

 

[xix] Id.

 

[xx] Id.

 

 

[xxi] Id.

 

 

[xxii] Id.

 

[xxiii] At Risk: Pre-Existing Conditions Could Affect 1 in 2 Americans: 129 Million People Could Be Denied Affordable Coverage Without Health Reform, http://www.healthcare.gov/news/reports/preexisting.html (2013); Video: What the Affordable Care Act Means to the PKD Community,

http://www.pkdcure.org/learn/multimedia/webinars/what-the-aca-means-to-the-pkd-community (2012);                Webinar:  Understanding the ACA and  PKD, https://www.youtube.com/watch?feature=player_embedded&v=9Cwww.healthcare.gov (2012).

 

See Also: The  Affordable Care Act By The Numbers

http://www.healthcare.gov/videos/2013/03/aca-by-the-numbers.html (2013)

 

[xxiv] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013). “        What are cysts?

A cyst in the kidney begins as an out-pouching of the nephron. Cysts can occur anywhere along the length of the nephron. Although polycystic means “many cysts”, only 2% of nephrons form cysts. The composition of the fluid inside the cysts often reflects the area in the nephron from which the cyst arose.

Approximately 70% of cysts detach from the nephron when they are still small, about 2 mm (1/8 inch) in diameter. Over time, the cysts enlarge and can become filled with clear fluid or fluid that contains blood or white blood cells.

Cysts can form in other organs, as well as the kidney; the most common extra renal site is the liver. Current research suggests that liver cysts form from cells lining the bile ducts or tubules of the liver rather than the liver cells themselves. It appears that rather than take the place of functioning liver cells, cysts merely push the liver cells aside. This is why liver cysts don’t cause liver failure even though the liver can become quite enlarged due to cysts.

Research has suggested that there are at least three components to cyst formation:

1. Cell proliferation: The cells of a cyst wall reproduce themselves more than normal kidney cells. This makes the cysts grow in size. 2. Fluid secretion: Secretion is a way of moving fluid across a cell. To form a cyst, there must be fluid. Secretion across the cyst wall into the cyst lumen; otherwise, there would merely be a ball of cells. 3. Abnormal basement membrane: The basement membrane is a very thin layer of tissue that the cyst cells sit on. In ADPKD this layer is thicker than usual. The basement membrane remodels as cysts grow. If this did not happen, cysts would not be able to enlarge.

In general, cysts cause problems because of their size and the space they occupy. The size of the kidneys and liver is directly related to how many and how big the cysts are. For example, people with kidneys over 15 cm (6 inches) are more likely to have pain and kidney dysfunction than people with smaller kidneys.”

See Also:  Common Questions About PKD: What are cysts? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013)

 

[xxv] Polycystic Kidney Disease: An Overview, http://www.mayoclinic.org/polycystic-kidney-disease/?wt.srch=1&wt.mc_id=google&keyword=minnesota_polycystic_kidney_polycystic_kidney&campaign=mcr_kidney_transplant&state=national&kw=polycystic%20kidney&ad=17330200157&Network=Search&SiteTarget=&gclid=CMz64IeGlrYCFYpDMgod3j0ALA (Mayo Clinic Website)(2013); Polycystic Kidney Disease: What is polycystic kidney disease?, http://www.kidney.org/atoz/content/polycystic.cfm (National Kidney Foundation’s Website)(2013); Polycystic Kidney Disease:  Definition, Diagnosis and Prognosis, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245 (Mayo Clinic Website)(2013); ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Institute Website)(2013).

 

[xxvi] Polycystic Kidney Disease:  Definition, Diagnosis and Prognosis, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245 (Mayo Clinic Website)(2013)

 

[xxvii] Symptoms, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=symptoms (Mayo Clinic Website) (2013); ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013).

 

[xxviii] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013):

“Is PKD contagious? How do other family members get it?

PKD is not contagious. It is a genetic disease meaning you have it in your chromosomes. Every person has 23 pairs of chromosomes, making a total of 46. Twenty-two pairs are called autosomes, and one pair is specifically devoted to determining the gender of an individual (X and Y chromosomes). Because the ADPKD genes are on autosomes, men and women have an equal chance of inheriting this disorder.

During reproduction, the chromosome pairs split in the formation of female eggs and male sperm. The woman donates 23 of her chromosomes to the baby and the man donates 23 in the sperm. In this way, when an egg is fertilized by a sperm, it will have the normal complement of chromosomes.

There are four possible ways the egg and the sperm of parents where one has ADPKD can combine. Two will contain the chromosome with the gene for ADPKD and two will not. Therefore, each child of a parent who has ADPKD has a 50 percent possibility of inheriting the affected chromosome.”

 

[xxix] Id;  ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013):

 

“How does a person get PKD?

ADPKD: Because PKD is an inherited disorder, the dominant form of the disease (ADPKD) is passed from one generation to the next by an affected parent. An ADPKD parent has a 50% chance of passing the PKD mutation to each of his/her children at conception – having a child who inherits ADPKD with each pregnancy, no matter how many children a person has. In some families, all the children are affected; in other families, none are. Many families with multiple children will have affected and unaffected children. Although most individuals with ADPKD have a family history, scientists have also discovered that approximately 10 percent of the PKD patient community became affected through spontaneous mutation.

Two genes that cause ADPKD have been identified. About 85% of people with ADPKD have mutations in the PKD1 gene, located on chromosome 16. The remaining 15% of individuals have mutations in the PKD2 gene located on chromosome 4. There are no other PKD genes that have been identified to date.

The disease caused by ADPKD1 is more severe than that caused by ADPKD2. Individuals with mutations in the PKD1 gene develop cysts, hypertension and loss of kidney function at an earlier age compared to the ADPKD2 gene.

ARPKD: This recessive disease requires a mutated gene from each parent for the disease to manifest in a child, who has, then, 2 mutated genes. In most cases, there is no family history of the disease, and the parents do not have the disease themselves but are carriers.”

 

See Also: Common Questions About PKD: How Do I Get PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013); Common Questions About PKD: Is PKD Contagious? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013).

 

 

[xxx] Id.

 

[xxxi] Id.

 

[xxxii] Id.

 

[xxxiii] Id.

 

[xxxiv] Id; Common Questions About PKD: What are the Symptoms of PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013)

 

[xxxv] Id.

 

[xxxvi] Id.

 

[xxxvii] Id.

 

[xxxviii] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013) “High blood pressure, or hypertension, affects about 60% to 70% of men and 40% to 50% of women with ADPKD — in many cases the percentage tends to increase as GFR decreases. High blood pressure begins early during the course of ADPKD, often before there is abnormal kidney function. One theory for hypertension in ADPKD is that as cysts form and enlarge they press on blood vessels in the kidney, resulting in decreased blood flow. Sensors in the kidney tubule react as though the blood pressure in the kidney is low. A hormone called renin is then secreted, which in turn generates angiotensin II, constricting the blood vessels, and causing high blood pressure. If not treated, hypertension damages the kidneys, enlarges the heart and can cause strokes.”

 

[xxxix] Id.  “Chronic pain or heaviness is one of the most common problems for people with ADPKD. The pain is usually in the back or the sides and occasionally in the abdomen. The pain can be intermittent and mild requiring only occasional pain medicine such as Tylenol. In a small number of people, the pain can be constant and quite severe. The only non-steroidal anti-inflammatory over-the-counter pain medication recommended for use in ADPKD patients is Tylenol which is an analgesic. The other compounds may be further damaging to the kidneys.”

 

 

 

[xl] Id.  “Hematuria, or blood in the urine, is something that nearly 50% of those with ADPKD will experience. The urine may look pink, red or brown. Passing small amounts of red blood cells in the urine that can only be seen under a microscope may also occur. This is called microscopic hematuria. Blood in the urine can last for less than a day or go on for days. Strict bed rest, increased fluid intake, and acetaminophen (if there is pain) are usually the treatments if the bleeding is prolonged. Most of the time, bleeding is self-limited and resolves with these conservative measures.”

 

 

[xli] Id, see note xxxiv.

 

 

[xlii] Id.  “Urinary tract infection (UTI) is caused by bacteria that have reached the bladder, kidneys or the cysts themselves. The infection usually starts in the bladder and can progress up the ureters into the kidneys. Although both men and women have UTIs, they are far more common in women. UTIs are common in the general population, but they appear to be more frequent in those with ADPKD. The most common symptom of UTI is pain or burning with urination and/or an urgent need to urinate even though there is only a small amount of urine. When the infection is in the kidney or in a cyst, there may be a sudden onset of fever, chills and back or flank pain.”

 

 

[xliii] A  PKD kidney can sometimes reach the size of a football, while a normal kidney is fist sized.  Polycystic Kidney Disease (PKD) FACT SHEET,  from the PKD Foundation, 4901 Main Street, Kansas City, MO 64112-2634(2013).

 

 

 

                       

 

 

 

[xliv] Id.  “Kidney stones occur in about 20%-30% of people with ADPKD, compared to 8%-10% in the general population. One reason kidney stones are more common may be due to cysts blocking the tubules, preventing normal drainage. When the urine stays in one area longer than it should, crystals can form and cause kidney stones. Another reason that stones may form in some people with ADPKD is that there is a decrease in urine citrate. Urine citrate is a substance that prevents formation of kidney stones. The symptoms of kidney stones are severe pain in the back, side or into the groin. Often there will be blood in the urine when passing a kidney stone.”

 

 

 

 

[xlv] Id.

 

[xlvi] Id. PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 at 4 (From the PKD Foundation)(2012); Complications of PKD, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=complications (Mayo Website)(2013); First Steps: Common Questions, http://www.pkdcure.org/learn/adpkd/first-steps-questions (2013).

“There are numerous complications associated with polycystic kidney disease including:

•              High blood pressure. Elevated blood pressure is a common complication of polycystic kidney disease. Untreated, high blood pressure can cause further damage to your kidneys and increase your risk of heart disease and stroke.

•              Loss of kidney function. Progressive loss of kidney function is one of the most serious complications of polycystic kidney disease. Nearly half of those with the disease have kidney failure by age 60. If you have high blood pressure or blood or protein in your urine, you have a greater risk of kidney failure.

Polycystic kidney disease causes your kidneys to gradually lose their ability to eliminate wastes from your blood and maintain your body’s balance of fluids and chemicals. As the cysts enlarge, they produce
pressure and promote scarring in the normal, unaffected areas of your kidneys. These effects result in high blood pressure and interfere with the ability of your kidneys to keep wastes from building to toxic levels, a condition called uremia. As the disease worsens, end-stage kidney (renal) failure may result. When end-stage renal failure occurs, you’ll need ongoing kidney dialysis or a transplant to prolong your life.

•              Pregnancy complications. Pregnancy is successful for most women with polycystic kidney disease. In some cases, however, women may develop a life-threatening disorder called preeclampsia. Those most at risk are women who have high blood pressure before they become pregnant.

•              Growth of cysts in the liver. The likelihood of developing liver cysts for someone with polycystic kidney disease increases with age. While both men and women develop cysts, women often develop larger cysts. Cyst growth may be aided by female hormones.

•              Development of an aneurysm in the brain. Localized enlargement of an artery in your brain can cause bleeding (hemorrhage) if it ruptures. People with polycystic kidney disease have a higher risk of aneurysm, especially those younger than age 50. The risk is higher if you have a family history of aneurysm or if you have uncontrolled high blood pressure.

•              Heart valve abnormalities. As many as one-quarter of adults with polycystic kidney disease develop mitral valve prolapse. When this happens, the valve no longer closes properly, which allows blood to leak backward.

•              Colon problems. Weaknesses and pouches or sacs in the wall of the colon (diverticulosis) may develop in people with polycystic kidney disease.

•              Chronic pain. Pain is a common symptom for people with polycystic kidney disease. It often occurs in your side or back. The pain can also be associated with a urinary tract infection or a kidney stone.”

 

See Also: ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013).

“Early in the progression of the disease there are generally no symptoms at all. In fact, many people are never diagnosed with ADPKD because they either have no symptoms or a few symptoms that mimic other diseases. Often the first sign is high blood pressure, blood in the urine, or a feeling of heaviness or pain in the back, sides, or abdomen. Sometimes the first sign is a urinary tract infection and/or kidney stones.

Over time, as cysts grow, the kidneys will increase in size and weight. The additional size can cause the crowding of other organs, which can become uncomfortable and even painful. In some cases, the kidneys become so large that they cause the midsection to bulge. Men can look like they have a “beer belly” and women can appear pregnant. “    Common Questions About PKD: What Will PKD Do To Me? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013).

 

[xlvii] Id.

 

 

[xlviii] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013).”         Can I prevent PKD?

Currently, no treatment can prevent cysts from forming or enlarging. Because PKD is a hereditary (genetic) disease, the only way to fully prevent it if you have a family history is to not have children. There is no intervention that will prevent the development of PKD in someone who inherits it.

Prenatal genetic testing is possible using samples from either chorionic villus sampling or amniocentesis. These genetic tests can either involve a direct search of the gene for mutations or an indirect association using linkage analysis. For linkage analysis, DNA samples are required from the fetus, the parents and other affected family members.

Another option for pre-natal diagnosis is a recently developed procedure called pre-implantation genetic diagnosis, or PGD. This is an early form of genetic diagnosis that involves the detection of specific genetic abnormalities in single cells taken from fertilized human embryos. The PGD procedure involves in vitro fertilization whereby eggs harvested from a mother are fertilized in a laboratory with the father’s sperm. Then, the fertilized embryos are tested for a specific genetic disorder (such as ARPKD) by removing one or two cells for genetic analysis. Embryos that are diagnosed as free of the disorder are then placed in the uterus with the intent to initiate a pregnancy.”

 

[xlix] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013).

 

[l] Id.  National Kidney Foundation Flyer, “How Do We Care For Our Kidneys?

 

A.           Monitor You BP And Cholesterol

B.           Monitor Your Sugar (Glucose)

C.           Control Your Weight

D.           Don’t Smoke

E.            Maintain A Healthy Diet

F.            Don’t Overuse Sleep Aid Or OTC Pain Meds

G.           Get An Annual Checkup

H.           Find Out If CKD, Diabetes Or Heart Disease Runs In Your Family

I.             Exercise

J.            Ask About Being Tested For CKD

K.           Key:  NKF Offers Free Screening “

 

See also:  10 Steps for Protecting Kidney Health, http://www.kidney.org/news/newsroom/newsitem.cfm?id=29 (National Kidney Foundation Website)(2013)

“Recent studies indicate that 26 million American adults suffer from chronic kidney disease (CKD) and that the number is likely to rise unless Americans get serious about prevention. Primary risks include: diabetes; heart disease; high blood pressure; a family history of kidney disease; and age 60-plus. Secondary risks include: obesity; autoimmune diseases; urinary tract infections and systemic infections.

 

Exercising regularly and controlling weight are just two of the ten ways keep your kidneys healthy.

 

10 Ways to Keep Kidneys Healthy

•Exercise regularly

•Don’t overuse over-the-counter painkillers or NSAIDs

•Control weight

•Get an annual physical

•Follow a healthful diet

•Know your family’s medical history

•Monitor blood pressure & cholesterol

•Learn about kidney disease

•Don’t smoke or abuse alcohol

•Talk to your doctor about getting tested if you’re at risk for CKD”

 

See Also: Common Questions About PKD: What Can I Do to Slow or Stop PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013).

 

[li] Test and Diagnosis, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=tests-and-diagnosis (Mayo Clinic Website)(2013); ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013) .

“How is PKD diagnosed?

A physician is alerted to the possibility of ADPKD in three different settings: when someone reports that there is a family history of ADPKD, when there are signs and symptoms that commonly occur in ADPKD, or when a test is done for some other reason and cysts are found in the kidney.

Currently, there are three main clinical tests that can be used to diagnose a person with PKD: ultrasound, computed tomography (CT) or magnetic resonance imaging (MRI).

Ultrasound is the most common and least costly screening method for ADPKD. A recent research study has produced diagnostic criteria that are useful for testing individuals having either the PKD1 or PKD2 mutation in the usual clinical setting in which molecular genotyping is seldom performed. To read a medical publication on this topic – which can also be printed and taken to your doctor – please click here.

Computed tomography (CT) and MRI scans are likely to be more sensitive than ultrasound but the sensitivity of these methods have not been systematically analyzed yet. CT scans, however, involve radiation and may also require iodinated contrast dye which can be toxic to the kidneys. CT scans or MRIs may be indicated for the evaluation of certain complications like bleeding into a cyst or a suspected kidney stone or alternatively if a more sensitive screening test with the ability to detect small cysts is deemed necessary.

DNA testing is available for ADPKD. There are two types of DNA tests: Gene linkage testing and Direct Mutation analysis. Gene linkage can determine ADPKD status with a 99 percent probability in informative families. Linkage testing is not a direct analysis of the DNA sequence of the PKD1 and PKD2 genes. Rather, it relies on the identification of certain “markers” in the DNA of several members of a family in which PKD has been diagnosed. For linkage analysis, blood samples must be obtained from the person being tested (the “proband”) as well as from several (typically three or more including the proband) persons from more than one generation of the proband’s family, including those affected and unaffected with ADPKD. A detailed family history and pedigree are also required. The results are typically reported to all family members that provided blood samples for the analysis.

In contrast, direct DNA
sequencing requires only a single sample from the proband. This method is a direct analysis of the DNA sequences of the PKD1 and PKD2 genes. It is private, and the results are only reported to the proband’s physician and the patient (the proband). Using very sophisticated DNA sequencing apparatus, each of the nearly 17,000 “bases” of DNA are analyzed and the entire sequence is thus determined. This method is capable of identifying those changes in the sequence that are indicative of disease. It may be the only option if family members are unavailable or unwilling to participate in a linkage study. Each of these methods has pros and cons….you can check on the costs…..”

 

See Also: Common Questions About PKD: How is PKD Diagnosed? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013)

 

 

 

[lii] Id.  Complications of PKD, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=complications (Mayo Website)(2013); Common Questions About PKD: What are the Complications of PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013).

 

[liii] Id.

 

[liv] Prevention, http://www.mayoclinic.com/health/polycystic-kidney-disease/DS00245/DSECTION=prevention (Mayo Website)(2013);  ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013) .

 

[lvi] Polycystic Kidney Disease, Kidney Failure, http://www.davita.com/kidney-disease/causes/polycystic-kidney-disease-(pkd)/polycystic-kidney-disease/e/5003 (DaVita Website)(2013); What are the Signs of Kidney Failure? http://www.pkdcure.org/learn/adpkd/first-steps-questions (PKD Foundation Website)(2013); Kidney Failure, Common Questions About Kidney Failure, http://www.pkdcure.org/learn/adpkd/kidney-failure-questions (2013).

 

[lvii] Id.

 

[lviii] Id.

 

[lx] Id

.

[lxi] ADPKD – Just Diagnosed Common Questions About How PKD Will Affect Your Health http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions (2013) :

“What are complications of PKD?

ADPKD is not just a kidney disorder; other organs can be affected, including the liver, spleen, pancreas, vasculature, testes, seminal vesicles and intestines.

A large percentage of people with ADPKD will develop liver cysts during their lifetime. Liver cysts rarely occur in those under the age of 30 but do form and increase as a person ages. Even though there is an increase in liver size, the amount of functional liver tissue remains fairly constant. Liver cysts occur as often in men as in women. However, women have liver cysts at a younger age than men and usually have more aggressive liver disease. Women who have been pregnant are more likely to have liver cysts; and the cysts are more numerous and larger in women who have been pregnant compared to women who have not been pregnant.

Cardiovascular complications include high blood pressure, cerebral aneurysms and mitral valve prolapse (MVP), a condition where the valve separating the top and the bottom of the left side of the heart does not close properly. Sometimes this causes blood to leak back to the top part of the heart. This is called regurgitation and can be heard as a heart murmur. MVP occurs in approximately 26% of the people who have ADPKD compared to 2%-3% of the general population. Symptoms that can be associated with MVP are palpitations, a feeling that the heart is running away or that there are extra beats in the heart, and chest pain that is not associated with exercise or exertion.

People with ADPKD have about a 5%-10% risk of developing intracranial aneurysms; the percentage is higher if there is a family history of aneurysms. An aneurysm is an out-pouching in a blood vessel. Intracranial aneurysms occur in the blood vessels of the brain. Aneurysms can leak or rupture. The symptoms of a ruptured aneurysm can include sudden severe headache, pain in moving the neck, nausea and vomiting, and even loss of consciousness. All such symptoms require immediate medical attention. Patients with ADPKD and a family history of intracranial aneurysms have a higher incidence of developing an aneurysm (22%) and should be screened more frequently.

Gastrointestinal complications of ADPKD include diverticulosis Diverticula are out-pouchings of the large intestine (colon). It seems that people with ADPKD who are on dialysis or have had a transplant have diverticula more often and have more complications from diverticula, including infection (divertiulitis), than people who have other kidney diseases. In addition to liver cysts, cysts can also form in the pancreas.

.              Am I at risk for other diseases because I have PKD?

ADPKD is not just a kidney disorder; other organs can also be affected.

These can include, but are not limited to liver cysts:

.              • Liver Cysts • Mitral Valve Prolapse (MVP)  • Intracranial Aneurysms  • Hernias • Diverticulosis

We include some brief information about each of these conditions which can be associated with ADPKD. If you have ADPKD, you and your family should be aware of these possibilities so you can play a major role in your own care.

Liver Cysts  Over 80% of people with ADPKD have cysts in the liver during their lifetime. Liver cysts occur in those under the age of 30 but they are small and often detectable only by sensitive MRI scanning.

The liver can remain normal in size with few cysts or become enlarged. Even though there is an increase in liver size, the amount of functional liver tissue remains fairly constant. Therefore, rather than have cysts take the place of normal tissue as occurs in the kidney, cysts in the liver seem to push good tissue aside. This appears to be the reason that normal liver function is preserved even with many cysts and enlarged liver size.

Liver cysts occur more often in women than men; women have liver cysts at a younger age and more and larger cysts than men. Women who have been pregnant are more likely to have liver cysts; and the cysts are also more numerous and larger in women who have been pregnant compared to women who have not been pregnant. This suggests that female hormones may influence the development of liver cysts.

Mitral Valve Prolapse (MVP)  Mitral valve prolapse (MVP) is a condition where the valve separating the top and the bottom of the left side of the heart (left atrium and left ventricle) does not close properly. Sometimes this causes blood to leak back into the left ventricle. This is called regurgitation and can be heard during an examination of the heart as a heart murmur. Symptoms that can be associated with MVP are palpitations, a feeling that the heart is running away or that there are extra beats in the heart, and chest pain that is not associated with exercise or exertion. MVP occurs in approximately 26 percent of the people who have ADPKD compared to 2 – 3 percent of the general population. The majority of people with MVP never experience any major problems.

Intracranial Aneurysms  An aneurysm is an outpouching in a blood vessel, which can leak or rupture. In these events the symptoms can include sudden severe headache, pain in moving the neck, nausea and vomiting, difficulties with speech or movement, and even loss of consciousness. All such symptoms require immediate medical attention.

Recent studies done in the United States suggest that people with ADPKD have about a 5 – 10 percent risk of developing intracranial aneurysms. Intracranial aneurysms also seem to cluster in certain families – that is, if a member of your family has an aneurysm or has ruptured an aneurysm, you may be at a higher risk of having an aneurysm yourself.

Because the risk for aneurysm is small, not everyone with ADPKD needs to be tested. However, people who have ADPKD and a family history of aneurysm should be tested, along with those whose job or hobbies would put them or others at risk if they lost consciousness (such as those who fly airplanes or drive buses). It is important to inform your physician if you have a family history of intracranial aneurysms and/or if you have a high-risk occupation or hobby.

Hernias Both inguinal and umbilical hernias are more common in those with ADPKD. Inguinal hernias are outpouchings of the abdominal wall in the area of the groin and umbilical hernias are outpouchings of the abdominal wall at or near the navel. These should be surgically repaired if they are large or are causing other problems, just as they would be in someone who does not have ADPKD.

.              Diverticulosis Diverticula are outpouchings of the large intestine (colon). It seems that people with ADPKD who are on dialysis or have had a transplant have diverticula more often and also have more complications from diverticula, including infection, than people who have other kidney diseases. At the present time, we are not recommending any routine evaluation for this possible symptom.”

 

See Also: Common Questions About PKD: What are the Complications of PKD? http://www.pkdcure.org/learn/adpkd/just-diagnosed-questions, (PKD Foundation Website)(2013).

 

[lxii] PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions, THE AFFORDABLE CARE ACT  (PKD Foundation Website) (2013); Patient Protection and Affordable Care Act, Pub. L. No. 111-148, 24 Stat. 119 (2010), as amended by Health Care and Education Reconciliation Act (ACA), Pub. L. No. 111-152, 124 Stat. 1029 (2010).

 

 

 

 

[lxiii] Id.

[lxiv] Id PRE-EXISTING CONDITIONS; Webinar, What the Affordable Care Act Means to the PKD Community, https://www.youtube.com/watch?feature=player_embedded&v=9C5qiGVMtsI (December 14, 2012); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm (2013).

 

[lxv] PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions, THE AFFORDABLE CARE ACT  (PKD Foundation Website) (2013); ); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm (2013).

“Universal Coverage Can Help those with Pre-Existing Conditions

 

A key component of the reform law is the government’s requirement that U.S. citizens buy health insurance–known as the individual mandate. Assuming that insurance is affordable, universal coverage would benefit people with pre-existing conditions, such as kidney disease. Provisions in the ACA eliminate annual and lifetime caps on the amount of expenses that health insurance covers. Among other things, these provisions are an opportunity to address discrimination against living organ donors seeking health insurance and as a way of providing an option for kidney transplant recipients who lose Medicare coverage for anti-rejection medications.”

 

See Generally: Health Insurance: Paying For Pre-Existing Conditions, http://www.investopedia.com/articles/pf/09/covering-medical-costs.asp#12821421892212&close (Accessed August 11, 2010).

Pre-Existing Condition
A pre-existing condition is a medical condition that existed prior to the date the patient signed up with a health insurance provider. Most insurance companies use one of two definitions to identify such conditions. Under the “objective standard” definition, a pre-existing condition is any condition for which the patient has already received medical advice or treatment prior to enrollment in a new medical insurance plan. Under the broader, “prudent person” definition, a pre-existing condition is anything for which symptoms were present and a prudent person would have sought treatment. Pre-existing conditions can include serious illnesses, such as cancer, less serious conditions, such as a broken leg, and even prescription drugs. Notably, pregnancy is a pre-existing condition that will be treated regardless of prior treatment.

While the definitions are fairly easy to understand when you know which one will be applied to your circumstances, it gets more complicated after you factor in the additional rules regarding coverage. Navigating through the bureaucracy begins with an understanding of the Health Insurance Portability And Accountability Act (HIPAA), which provides limited protection for consumers enrolled in group healthcare plans with regard to healthcare coverage and pre-existing conditions. (For more insight, read Fighting The High Costs Of Healthcare.)”

 

[lxvi] Id.

 

[lxvii] Id.

 

[lxviii] Id.

 

 

[lxix] Id.

 

[lxx] PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012); PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions, THE AFFORDABLE CARE ACT  (PKD Foundation Website) (2013); ); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm (2013); Health Insurance: Paying For Pre-Existing Conditions, http://www.investopedia.com/articles/pf/09/covering-medical-costs.asp#12821421892212&close (Accessed August 11, 2010).

 

See Also:  Making a Clinical Diagnosis of PKD: Pros and Cons, http://www.pkdcure.org/research/making-a-clinical-diagnosis-of-pkd-pros-and-cons (PKD Foundation Website) (2013)(“ insurers may consider his childhood diagnosis of PKD to be a ‘pre-existing condition’ and deny coverage”); Henig, Do You Really Want to Know if You Have a Disease Gene? http://www.nasw.org/users/robinhenig/gene_testing.htm (April 27, 1998) (“I myself am at risk for a genetic disease called polycystic kidney disease. My father died of PKD two years ago, when he was 76, and because the gene is dominant I run a 50-50 chance of inheriting it. I can take a blood test to see if I carry the gene most commonly associated with PKD, or I can have a sonogram to see if my kidneys look diseased. But I have done neither.

 

It’s weird that I, a medical journalist committed to the idea that knowledge is always better than ignorance, have chosen to remain ignorant about my own genetic status. But if I have PKD, there’s not much I can do about it. There is no drug or diet that keeps PKD from progressing, eventually, to kidney failure. Nor is there any way of knowing whether that progression would end relatively early, in my 40s, or relatively late, in my 80s, when I might already have died of something else. And since I had my children before I even knew PKD ran in the family, no childbearing decisions remain for me based on whether I do or do not carry a damaged gene.

 

In addition, knowing about my PKD status might, under the current system, make me uninsurable. Not only would my knowledge turn PKD into a “pre-existing condition” – as it would not be if I didn’t know about it – for health insurance, but it would make it virtually impossible to find the kind of life insurance and disability insurance I would need. And I might become not only uninsurable but unemployable, too, if a new employer were to decide I was unlikely to offer a good return on his training investment.

 

Seems simple, right? Just decide not to know. But here’s the rub: my daughter does want to know whether she carries the PKD gene. And since she just passed her 18th birthday, she is free to find out. Hers is a different situation: she is now making plans for the rest of her life, and she wants her decisions to be as informed as possible. She is entitled to that choice, and the matter is really one that should be entirely between her and her physician.

 

Except for one thing. If my daughter did get tested, and did have the PKD gene, then I would by default have found out something I had already decided I did not want to know: that I had the gene, too, since the only way she could have gotten it was from me.

 

Our own little family saga is played out thousands of times a day at genetic counseling clinics and doctors’ offices across the country. Each of us carries at least a few damaged genes. Usually, unlike the PKD gene, bad genes are recessive, meaning we usually don’t find out we have them unless they cause problems in our children. But once genetic testing becomes widespread, we will all be able to learn our own secret weaknesses. And sometimes, as would happen to me if my daughter tested positive, we will learn about them against our will.”)(emphasis added).

 

Polycystic Kidney Disease Support Group, http://www.dailystrength.org/c/Polycystic_Kidney_Disease_PKD/advice/11212820-2-s-testing-and-popping (2013) (“Hello All,

 

I recently found out that my father has PKD, and he said I should get tested for it. But when I talked to my doctor she recommended not getting tested since there is nothing that can be done if I DO have it, and I would then be considered to have a pre-existing condition and could be denied insurance coverage for it if I should ever have to switch insurers. It has been more than a year and I haven’t gotten tested. But lately I’ve been waking up in the mornings with minor back pain in the kidney areas, and I sometimes feel a strange popping sensation in the kidney area. The popping sensation is not painful, but annoying. If I press my hand into the place I am having the sensation (lower back ribs) I can feel a sort of slight twitching between or under the ribs. I know this sounds strange, but it makes me worry about what might be happening with my kidneys, and I just wonder if any of you may have experienced anything similar with PKD.

 

Thanks so much for responding!

Chris

Posted on 01/01/11, 10:43 am

Response In Pertinent Part

“Your doctor gave you good advice on not getting tested. The pre-existing condition situation is a cruel one and more than one of us has been caught up in that mess and been denied not only decent healthy insurance, but also life insurance and some employment (PKD as a pre-existing condition renders you ineligible for military service, public health service (same medical criteria as the military), and many police and fire fighters if it’s known up front”).  Dr Oz.

 

[lxxi] PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012); PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions, THE AFFORDABLE CARE ACT  (PKD Foundation Website) (2013); ); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm (2013); Health Insurance: Paying For Pre-Existing Conditions, http://www.investopedia.com/articles/pf/09/covering-medical-costs.asp#12821421892212&close ( 2010).

 

 

[lxxii] Id.  http://www.cms.gov/MedicareGenInfo/ (2010)

 

[lxxiii] Health Insurance: Paying For Pre-Existing Conditions, http://www.investopedia.com/articles/pf/09/covering-medical-costs.asp#12821421892212&close (2010)

 

[lxxiv] PKD And Health Insurance, PRE EXISTING CONDITIONS,  http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions  (PKD Foundation Website) (2013); We Know Health Care is Personal. It’s Your Care, http://www.whitehouse.gov/mycare (2013) (White House Website) (“Two years ago, President Obama signed the Affordable Care Act – health reform – into law. The President’s health care law gives hard working, middle class families the security they deserve. The new law forces insurance companies to play by the rules, prohibiting them from dropping your coverage if you get sick, billing you into bankruptcy because of a lifetime limit, or, soon, discriminating against anyone with a pre-existing condition.

As the provisions in the law start to take effect, millions of Americans are seeing a noticeable difference in the cost and quality of their health care.

Here are just a few examples of ways health care reform is having an impact on your care.

•              Coverage for young adults. Young adults are allowed to remain on their parent’s plan until their 26th birthday. Up to 2.5 million young adults through age 26 have gained coverage on their parent’s plan.

•              Protection for seniors. The law ensures that we continue to protect seniors’ guaranteed Medicare benefits. In 2011, 32.5 million Medicare beneficiaries received free preventive services like mammograms and colonoscopies and 3.6 million Medicare beneficiaries received a discount on their prescription drugs that averaged over $600.

•              Pre-existing condition coverage. About 50,000 uninsured people with pre-existing conditions have gained coverage through the Pre-existing Condition Insurance Plan, including people with cancer, hemophilia, and other diseases that blocked them out of the health insurance system.

•              Patients’ Bill of Rights. The Patient’s Bill of Rights will put an end to some of the worst insurance abuses and puts consumers, not insurance companies, in control of their health care. For example, insurance companies will no longer be able to place lifetime limits on coverage, they will be required to cover preventive services like cancer screenings without a copay and they must spend more of your premium dollars on health care costs not administrative costs.”) (emphasis added);

 

 

See Also: People with Disabilities, http://www.whitehouse.gov/healthreform/relief-for-americans-and-businesses#healthcare-menu (2013). (“Ending Insurance Company Abuses: Thanks to the Affordable Care Act, insurers can no longer put a lifetime cap on how much care they will pay for if you get sick, or cancel your coverage when you make a mistake on your paperwork.

Ending Discrimination against Pre-Existing Conditions: Under the new health care law, plans are no longer allowed to deny or exclude coverage to any child under age 19 based on a pre-existing condition, including a disability. Starting in 2014, these same plans won’t be able to discriminate against anyone with a pre-existing condition.

Expanding Affordable Coverage: If you have been uninsured for six months and can’t buy private insurance because of a pre-existing condition, you can join the Pre-Existing Condition Insurance Plan. To find out about plans available in your State, please visit www.pcip.gov.”); Helpful Tips, 13.               http://www.cms.gov/HealthInsReformforConsume/Downloads/HIPAA_Helpful_Tips_Rev_1.pdf (2010)  (“As discussed earlier in this preamble, section 1201 of the Affordable Care Act adds a new PHS Act section 2704, which amends the HIPAA rules relating to preexisting condition exclusions to provide that a group health plan and a health insurance issuer offering group or individual health insurance coverage may not impose any preexisting condition exclusion. The HIPAA rules (in effect prior to the effective date of these amendments) apply only to group health plans and group health insurance coverage, and permit limited exclusions of coverage based on a preexisting condition under certain circumstances. The Affordable Care Act and these interim final regulations prohibit any preexisting condition exclusions imposed by group health plans or group health insurance coverage and extends this protection to individual health insurance coverage. This prohibition generally is effective with respect to plan years (in the individual market, policy years) beginning on or after January 1, 2014, but for enrollees who are under 19 years of age, this prohibition becomes effective for plan years (in the individual market, policy years) beginning on or after September 23, 2010.”) Understanding the Reforms, Consumer Rights and Protection, http://www.whitehouse.gov/healthreform/healthcare-overview#healthcare-menu (2013) (“End to Pre-Existing Condition Discrimination: Insurance companies can no longer deny coverage to children because of a pre-existing condition like asthma and diabetes, providing peace of mind for parents of the more than 17.6 million children with pre-existing conditions. Starting in 2014, no American can be discriminated against due to a pre-existing condition.

End to Limits on Care: In the past, some people with cancer or other chronic illnesses ran out of insurance coverage because their health care expenses reached a dollar limit imposed by their insurance company. Under the health care law, insurers can no longer impose lifetime dollar limits on essential health benefits and annual limits are being phased out by 2014. More than 105 million Americans no longer have lifetime limits thanks to the new law.

End to Coverage Cancellations: Insurance companies can no longer drop your coverage when you get sick due to a mistake you made on your application.”)

Health Reform in Action

 

[lxxv] Id.

 

 

[lxxvi] Pre-Existing Condition Insurance Plan (PCIP) http://www.healthcare.gov/law/provisions/preexisting/index.html  (2013); People with Disabilities, http://www.whitehouse.gov/healthreform/relief-for-americans-and-businesses#healthcare-menu (2013). (Ending Insurance Company Abuses: Thanks to the Affordable Care Act, insurers can no longer put a lifetime cap on how much care they will pay for if you get sick, or cancel your coverage when you make a mistake on your paperwork.

Ending Discrimination against Pre-Existing Conditions: Under the new health care law, plans are no longer allowed to deny or exclude coverage to any child under age 19 based on a pre-existing condition, including a disability. Starting in 2014, these same plans won’t be able to discriminate against anyone with a pre-existing condition.

Expanding Affordable Coverage: If you have been uninsured for six months and can’t buy private insurance because of a pre-existing condition, you can join the Pre-Existing Condition Insurance Plan. To find out about plans available in your State, please visit www.pcip.gov.”)

 

[lxxvii] Id.

 

[lxxviii] Pre-Existing Condition Insurance Plan – Notification, https://www.pcip.gov/ (2013) (“Beginning February 16, 2013, the federally-run Pre-Existing Condition Insurance Plan (PCIP) is suspending acceptance of new enrollment applications until further notice. State-based PCIPs may continue accepting enrollment applications through March 2, and will then suspend acceptance of new enrollment applications until further notice. PCIP will continue providing coverage to more than 100,000 people currently enrolled nationwide. We encourage you to visit http://finder.healthcare.gov Exit Disclaimer Icon to explore your other health care options.”)

[lxxix] Id

 

[lxxx] Id.

 

[lxxxi] PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012). Webinar, What the Affordable Care Act Means to the PKD Community, https://www.youtube.com/watch?feature=player_embedded&v=9C5qiGVMtsI (December 14, 2012).

 

 

[lxxxii] Id., PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions, THE AFFORDABLE CARE ACT  (PKD Foundation Website) (2013); ); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm (2013); Webinar, What the Affordable Care Act Means to the PKD Community, https://www.youtube.com/watch?feature=player_embedded&v=9C5qiGVMtsI (December 14, 2012).

 

[lxxxiii] Id.

[lxxxv] PKD And Health Insurance, PRE EXISTING CONDITIONS,  http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions  (PKD Foundation Website) (2013).

 

[lxxxvi] Id.

 

 

[lxxxvii] Pre-Existing Condition Insurance Plan (PCIP) http://www.healthcare.gov/law/provisions/preexisting/index.html  (2013).

 

[lxxxviii] Id.

 

[lxxxix] Id

 

[xc] Id.

 

[xci] PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012); PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions, THE AFFORDABLE CARE ACT  (PKD Foundation Website) (2013); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm (2013); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm, (2013); Health Insurance: Paying For Pre-Existing Conditions, http://www.investopedia.com/articles/pf/09/covering-medical-costs.asp#12821421892212&close ( 2010).

 

See Also:  A+ for Affordable Care Act, http://www.pkdwillnotbeatme.com/knowledge/a-for-the-affordable-care-act/ (2012) (“I am not a political junkie and I surely did not read the whole Affordable Care Act, but the one item for which I am very grateful is that I no longer have to fear being denied health coverage because I have a pre-existing condition. What a relief to know that I don’t have to hide this major component of my life– in which I have no control– from my employer and my health insurance provider. My heart is happy that those parents can now get their children tested and there will be no more waiting games, wondering if they have passed PKD on to their child.”); Keefer, Video: Keeping a Positive Attitude with PKD, http://www.pkdcure.org/learn/multimedia/webinars/keeping-a-positive-attitude-with-pkd (2013); Supreme Court Ruling a “Relief” for Local Family, http://www.sandiego6.com/news/local/Supreme-Court-Ruling-a-Relief-for-Local-Family-160794345.html# (2012) (“Local families with pre-existing conditions expressed relief on social media sites following the Supreme Court’s ruling to uphold the federal health care law.  Among them: Eric Ranaldi and his wife.

Ranaldi has polycystic kidney disease, a genetic disorder with no cure.

“There’s pain, there’s all sorts of different issues,” he said. “I have to take all sorts of medication to control my blood pressure, and eventually, I’m going to have to have a [kidney] transplant.”

Ranaldi has coverage from his employer, but he’s thinking about finding a new job. That means finding new health insurance with a pre-existing condition.

“The first thing in my mind is well, are you going to have medical coverage? Am I going to have medical insurance? Are our children going to have medical insurance?” his wife, Rabecca, said.

Starting in 2014, the federal act will make it illegal for insurers to deny coverage because of a pre-existing condition, or set an unrealistic rate for people with one.

The law has already eliminated lifetime caps on coverage, and will take away annual caps in 2014. That means if Eric needs a kidney transplant, he won’t be told he’s already reached his limit.”);

Healthcare reforms, PKD, and the Affordable Care Act, http://www.dailystrength.org/c/Polycystic_Kidney_Disease_PKD/forum/9576515-pkd-foundation-health-care (2010) (“SUPPORT FOR PKD PATIENTS,

Provision: Immediate access to insurance for uninsured individuals with a pre-existing condition through high- risk pools

What It Means for You: Helps patients, who do not have health insurance because of a pre-existing condition gain access to health insurance Effective Date: Immediate (Within 90 days)

Citation: P.L. 111-148; Title I; Sec. 1101

 

Provision: Prohibits pre-existing condition exclusions

What It Means for You: Prevents health insurance plans from not covering services, procedures or medications related to your pre-existing condition

Effective Date: January 1, 2014

Citation: P.L. 111-148; Title I; Sec. 2704.

 

Provision: Prohibits discrimination against individual participants and beneficiaries based on health status (includes protections against use of genetic information)

What It Means for You: Helps protect people with genetic diseases, such as PKD, from discrimination in premiums and types of health insurance plans available for purchase

Effective Date: January 1, 2014

Citation: P.L. 111-148; Title I; Sec. 2705.

 

Provision: Provides coverage for individuals participating in approved clinical trials

What It Means for You: Ensures your health insurance will still pay for services, procedures and medications related to an approved clinical trial

Effective Date: Immediate (Within 90 days)

Citation: P.L. 111-148; Title I; Sec. 2709.

Provision: Eliminates lifetime or annual benefit caps

What It Means for You:: Removes arbitrary annual and lifetime benefit limits that insurance companies can impose

Effective Date: Within six months; (There are exceptions.)

Citation: P.L. 111-148; Title I; Sec. 2711.

 

Provision: Closing the Medicare prescription drug (Part D) coverage gap or donut hole

What It Means for You: If you are currently enrolled in a Medicare Part D plan and you hit the coverage gap in 2010, Medicare will provide a $250 rebate. There will be a phase down of the Part D coverage gap from 100 percent to 25 percent by 2020.

Effective Date: Rebate in 2010; Phase down through 2020

Citation: H.R. 4872; Title I; Sec. 1101.“)

 

 

[xcii] Kidney Disease by the numbers, Flyer distributed at Washington, DC advocacy training session, March 13, 2013 (2013)

[xciii] Id.

 

 

[xciv] Id.

[xcv] Id.

 

[xcvi] Id.

 

[xcvii] Id.

 

[xcviii] Id.

 

[xcix] Id., University of Cincinnati’s Transplant page, http://universityhospital.uchealth.com/services/transplant/(2013).

 

[ci] Kidney Disease by the numbers, Flyer distributed at Washington, DC advocacy training session, March 13, 2013 (2013)

 

[cii] Id.

 

[ciii] Id.

 

[civ] Id.

 

[cv] Id.

 

[cvi] Christine S. Rizk, JD, and Sanjiv N. Singh, MD, JD, Implications of the Affordable Care Act for Kidney Transplantation, http://virtualmentor.ama-assn.org/2012/03/pfor3-1203.html (2012).

 

[cvii] PKD and Health Insurance, www.pkdcure.org/document.doc?id=357, pp. 1-14 (From the PKD Foundation)(2012); PKD And Health Insurance, http://www.pkdcure.org/learn/adpkd/living-with-pkd-questions, THE AFFORDABLE CARE ACT  (PKD Foundation Website) (2013); ); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm (2013); The Supreme Court Ruling on the Affordable Care Act–It May Help the Kidney Community, http://www.kidney.org/news/monthly/The_Supreme_Court_Ruling_on_the_Affordable%20Care_Act.cfm, (2013); Health Insurance: Paying For Pre-Existing Conditions, http://www.investopedia.com/articles/pf/09/covering-medical-costs.asp#12821421892212&close ( 2010).

 

See Generally: Sara Rosenbaum, The Patient Protection and Affordable Care Act: Implications for Public Health Policy and Practice, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3001814/ (2011)(“ The Affordable Care Act is a watershed in U.S. public health policy. Through a series of extensions of, and revisions to, the multiple laws that together comprise the federal legal framework for the U.S. health-care system, the Act establishes the basic legal protections that until now have been absent: a near-universal guarantee of access to affordable health insurance coverage, from birth through retirement. When fully implemented, the Act will cut the number of uninsured Americans by more than half. The law will result in health insurance coverage for about 94% of the American population, reducing the uninsured by 31 million people, and increasing Medicaid enrollment by 15 million beneficiaries. Approximately 24 million people are expected to remain without coverage.”)(emphasis added); Vestal, After Expanding Coverage, Health Care Pioneer Seeks to Tame Costs, http://www.pewstates.org/projects/stateline/headlines/after-expanding-coverage-health-care-pioneer-seeks-to-tame-costs-85899466678 (2013)(“ Seven years after its groundbreaking health reforms, which became the model for the Affordable Care Act, Massachusetts boasts an uninsured rate of less than 2 percent, compared to a national average of 16 percent”); Will States Allow Obamacare to Bring Universal Coverage? http://blogs.lawyers.com/2013/02/states-obamacare-universal-coverage/ (2013) (“One of the primary goals of the Patient Protection and Affordable Care Act, or Obamacare,  is to make insurance available to as many consumers are possible. Now, as the law gears up toward full implementation in 2014, states are grappling with how to balance near-universal care with protecting their pocketbooks.

 

Close to 50 million people lacked health insurance before the law’s passage, with tens of millions more who had insurance that was inadequate to cover their needs. The ACA aimed at extending insurance to more than 33 million more people through a mixture of Medicare expansion, tax credits to help pay for private insurance and a series of reforms that force insurers to accept most applicants.”)

 

[cviii] PKD Foundation FACT SHEET (2013).

 

[cix] Id.

 

[cx] Id

 

 

 

.

[cxi] National Kidney and Urologic Diseases

Information Clearinghouse (NKUDIC), http://kidney.niddk.nih.gov/kudiseases/pubs/polycystic/ (2013) (“In the United States, about 600,000 people have PKD, and cystic disease is the fourth leading cause of kidney failure.”); PKD Foundation FACT SHEET (2013).

 

[cxii] National Kidney Foundation Flyer, Kidney Disease by the Numbers (2013).

 

[cxiii] Home dialysis discussion forum, what’s the normal life expectancy of a dialysis patient, http://forums.homedialysis.org/threads/510-whats-the-normal-life-expectancy-of-a-dialysis-patient(2005); Kidney Dialysis Life Expectancy, http://www.buzzle.com/articles/kidney-dialysis-life-expectancy.html (2010) (“The normal life expectancy of a patient is 3-5 years. It is assumed that if a person is undergoing the treatment for chronic kidney diseases, then the end is near. This is because only someone with the most advanced stage (stage 5) of this disease will be put under the treatment. This stage is also known as End Stage Renal Disease (ESRD) and recovering from this is virtually unheard of. The mortality rate for patients suffering from ESRD is 22% annually, and this effectively means that surviving beyond 5 years is going to be highly unlikely.”); Kidney Dialysis Life Expectancy, http://www.kidneycoach.com/1389/kidney-dialysis-life-expectancy-kidney-failure/(2013) (“The average life expectancy of someone receiving kidney dialysis is 4.25 years.

• The 10 year kidney dialysis life expectancy is 23%.”)

 

 

[cxiv] Goldman, Kidney-transplant patients celebrate unprecedented freedom from immunosuppressant drugs, http://med.stanford.edu/ism/2012/march/kidney-0307.html (2012) (“On average, transplant recipients have twice the life expectancy of people on chronic dialysis,” said Scandling, a professor of medicine who is medical director of Stanford’s adult kidney and pancreas transplantation program); The Benefits of Transplant versus Dialysis, http://www.bidmc.org/Centers-and-Departments/Departments/Transplant-Institute/Kidney/The-Benefits-of-Transplant-versus-Dialysis.aspx (2013) (“On the other hand, patients who receive a kidney transplant typically live longer than those who stay on dialysis. A living donor kidney functions, on average, 12 to 20 years, and a deceased donor kidney from 8 to 12 years.”); Booklet from Indiana University Health, Kidney Transplant Education for the Pretransplant Patient (2013); Shorter wait means longer life for kidney transplant candidates, http://news.ufl.edu/2009/02/18/kidney-transplant/ (2013) (“Kidney transplantation doubles life expectancy compared with dialysis treatment.”)

 

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