Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies



Posted on October 27, 2016 by nkf _advocacy

By Kevin Longino, CEO and Leilah Sampson, Kidney Advocacy Committee Patient Liaison

As kidney transplant recipients and advocates we were enthusiastic and hopeful to learn that the Food and Drug Administration (FDA) had scheduled a public meeting for organ transplant recipients to share their experiences with scientists and decisions makers in new drug development as part of the Patient Focused Drug Development Initiative.  For the past few years the National Kidney Foundation (NKF) has advocated for FDA to include organ recipients as part of this initiative, so we were pleased that our advocacy efforts were successful.  However, we also know following the meeting much more advocacy will be needed to advance solutions to the issues that organ recipients raised during the meeting and the National Kidney Foundation is committed to this effort.  First and foremost, if you are reading this and have not submitted your own comments on the questions raised during the meeting you can do so here.  Additionally, since we were selected as panelists we wanted to share our thoughts and experiences at the meeting.

Prior to the event, we were asked to respond to ten questions divided into two topics on life post organ transplant. The first topic was titled, “Disease Symptoms and Daily Impacts That Matter Most to Patients”.  This topic focused mainly on how your symptoms (post transplant) affected you emotionally and physically in completing daily tasks. The second topic titled, “Patients’ Perspectives on Transplant and Treatment Options” focused more on how you are managing your post transplant treatment regimen. As we mentioned, you can submit your own responses to these questions as well and we encourage you to do so.

Leilah participated in the panel on topic one, as one of five panelists and the only adult kidney transplant recipient alongside of the Pediatric kidney representative and lung, liver, and heart recipients.  In preparation for the meeting, Leilah met with FDA staff in charge of the meeting who expressed appreciation for her honesty about her post transplant experience not being “rainbows and sunshine”, but more so trial and error. They also felt because she was a transplant newbie; she could represent a fresh perspective that would help balance the other seasoned panelists perspectives. FDA briefed Leilah on what to expect when she arrived and to prepare a narrative style version of her comments (as patients get nervous on the panel). Leilah set the intention for her speech to reflect her life of self compassion and honoring her transplant process.

When we arrived at the campus we were appreciative to see so many patients, caregivers, researchers and FDA staff all committed to hearing the voices of organ transplant recipients. The first half of the day was all patient discussion on comorbidities, daily challenges, medications and side-effects post-transplant. Many recipients, like Leilah, shared their experiences having depression and anxiety post transplant. Many also highlighted social stigma as the public expecting them to be “cured” from disease with their new organ, when in reality the need to take multiple medications at specific times of the day, and that had various side-effects reminded them they were still not “normal”. Some participants indicated hesitancy to discuss symptoms post transplant with their healthcare professionals as they had received comments back that they should learn to adapt and instead focus on the fact they were still alive and no longer on dialysis.

Polling questions were asked of the audience and multiple choice responses given as options, but throughout the polling there were a significant number of patients who experienced challenges not captured by the multiple choice responses and instead indicated “other” experiences during the polling.  Some of the comments raised in those “other” categories included: fear of rejection, but also fear of infection, skin cancer, and other cancers due to immunosuppression therapies – many participants had also experienced these complications.

The addition of the afternoon sessions was different than past PFDD meetings for other conditions. The afternoon included scientific presentations and panels on non-adherence to transplant regimens and interventions to improve adherence.  Most of the patients participating in person indicated that while they faced challenges with taking multiple medications, overall they were adherent. Although they also recognized they were perhaps not reflective of all organ transplant recipients.  Webinar participants indicated through polling a greater difficulty with adherence than those participating in person. We and other participants discussed how we were active in working with our care team to modify dosing of medications to reduce side effects.  Kevin specifically indicated a need to have personalized immunosuppressive regimens, which could improve both adherence and reduce side effects.  We and other participants also acknowledged a need for greater psychosocial support from our care team post-transplant.  Of course, we were all supportive of one organ recipient’s comment on the need to have one magic combination pill that we only have to take once a day – oh and it could come with no side effects too.

We were surprised to see so little interaction from the FDA staff. They fulfilled their duty of hearing the voices of the patients. After a long day of discussions, presentations, and polling about symptoms and the impact of organ transplant regimens on patients; we left better educated but even more motivated. More importantly, we left with the obligation to spread what we learned from the research and opinions of other seasoned organ transplant patients to the pre-transplant community. I think we all agreed that laying the foundation for post-transplant life begins with implementing support and coping skills long before transplantation occurs. Although we have only scratched the surface of trying to understand how to better support organ transplant patients; we are pleased to know that the FDA, among many other organizations, are opening their ears to hear from us – the patients.  If you are an organ recipient please do take the time to send your responses to the FDA by November 27, 2017, they are listening and comments will be included in the final report.  You can also view the presentations and listen to the recorded meeting here.

Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies




Please sign and share:

Pass The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act !

From the NKF:

On September 22nd, Representatives Burgess (R-TX), Kind (D-WI), Harper (R-MI), Meehan (R-PA), Herrerra Beutler (R-WA), Cooper (D-TN), Griffith (R-VA), and McDermott (D-WA) re-introduced the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139).  H.R. 6139 will serve as a safety net by assisting kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new transplant.

Individuals with end-stage renal disease (ESRD), who require dialysis or a transplant to survive, are eligible for Medicare regardless of age or other disability.  If these ESRD patients remain on dialysis, there is no time limit on their Medicare eligibility.  However, despite quality of life benefits and the cost-effectiveness associated with transplantation compared to kidney dialysis, recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant.  As a result, they often face the challenge of finding affordable coverage that allows them to obtain medications required to maintain their new kidney.  If the transplanted kidney fails, they must return to dialysis and wait again in the hopes of receiving another transplant.  Both of these options are more costly and more detrimental to patient health than maintaining the new kidney.

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would extend Medicare for immunosuppressive medications indefinitely, ensuring patients have access to these lifesaving medications.  Only immunosuppressive coverage would be extended and all other Medicare coverage would end 36 months post-transplant, as it does now.  The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include this benefit.  By supporting lifetime immunosuppressive coverage, Congress will help improve long-term transplant outcomes, reduce the number of kidney patients who require another transplant, and enable more patients to choose transplantation.

Please contact your Representatives and urge them to cosponsor the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act to help transplant recipients keep access the medications they need to maintain their new kidney.


“Extending Medicare coverage of immunosuppressive drugs for kidney transplant recipients is a critical step to ensuring a patient’s best chance of success post-transplant.” – Kevin Longino, CEO of the National Kidney Foundation.”

Link to Petition :









How does one normally become aware of  Polycystic Kidney Disease?  In my case, I became aware through my Father. I’m 62 now.  This is about the same age my Dad was when he first told me he had PKD.  He had been to the Mayo Clinic for a checkup, and he reported to me that he had “kidney disease.”  He went on, “let me put it this way, the doctors said I won’t live to be a hundred.”  In the years that followed he became dizzy, had difficulty standing and maintaining his balance.  In a very short time, he was on dialysis.  By 1983, he was gone.  He spent the last month of his life in the hospital, St. Margaret’s in Hammond, Indiana.  He died a slow, lingering death of congestive heart failure and uremic poisoning all secondary to PKD.   I learned that as a child, his entire family had been quarantined as a result of small pox, and almost all of my family on my Father’s side had died as a result of what was originally termed as “environmental PKD,” or due to a scarring of the kidneys that later turned into cysts and infection.

One thing about this, I had a cousin Rich, who did not live with this group, and he too died from PKD related causes.  He was in his 30’s when he died, he had just married and this came as quite a shock to the rest of us.  They termed this, “Childhood PKD” and told the rest of us it was an aberration.

When my Dad told of us diagnosis, I was in law school, when he died I was already working my second attorney job.  Very shortly after his death, I went into the hospital in Valparaiso, Indiana, what was then called Porter Memorial, with chest pains.  My PCP told me that my cysts were so large they could be seen on a plain x-ray.  So much for the environmental/childhood theories.  To say this came as a blow, was an understatement.  I watch my Dad die and I felt my future was cast in cement.

I did a lot of things wrong after that, but more importantly were the things I did that were right.  I not had the local nephrologists my Dad had in NW Indiana, but also retained nephrologists at IU Health at Indiana University.  I was put on a renal diet right way.  I was given high blood pressure medication.  I saw them every six months, where they did a urine test and a blood test on every visit.  I was able to put dialysis for a long time, over 30 years.  I was horribly frightened of dialysis because of what I saw when I sat with my Dad.  But because I had followed medical advice and had excellent care, my dialysis was not unreasonably difficult.

Others were not so lucky.  I became a kidney advocate and this is what I plan to do the rest of my life.  I like helping others , especially my friends with PKD!



On April 27, 2016, I became the first Myers ever to have a kidney transplant at my lucky place, IU Health in Indianapolis.

For PKD Awareness Day, I want to remind everyone to get tested.  It is a simple and inexpensive blood and urine test that takes no time at all, but can make a world of difference. If PKD runs in your family, like mine, don’t hesitate to get checked out.  Be PKD aware!






Soon, your member of Congress will be on recess from Washington, D.C., and available to meet with constituents in his or her home office. This is a great opportunity to meet with your Congressperson or Senators to discuss important legislation that affects patients and families living with polycystic kidney disease (PKD). I have done this many times, and I have a few suggestions based on my experience.



  • Make your appointment early. Remember that before your Congressperson comes home, he has made plans to hold other meetings outside of his office (groups, speeches, town halls, etc.) and has limited time in his or her office. Call his assistant now and make your appointment as early as possible.
  • Send a follow-up confirmation e-mail. As soon as your appointment is set, write to the appointment maker to confirm the date and time of your appointment. Be sure to put it on your calendar. Ten days ahead of the appointment, write to the appointment maker and make sure that date and time are still feasible.
  • Be prepared! Make sure you have materials to review with your Representative. You will want to leave a set of these materials behind so your Representative can review them later. 


  • Arrive Early. Meetings are usually scheduled one after the other, and no one usually gets more than 15 to 20 minutes.
  • Avoid political discussion and stay on message. Remember, kidney issues and legislation are bi-partisan and politically neutral.
  • Tell your kidney story! This is the most effective way to advocate for your group. I’ve lost five members of my family to PKD, plus my father. I know what I’m talking about. Your story will be remembered for a long time. My Representatives now repeat my story to me when I show up: “Jim, didn’t you just have a transplant in April?”
  • Stick to the talking points provided by the PKD Foundation. Use the material to review or make a PowerPoint presentation that stays on track with the materials.
  • Don’t forget your ask! Ask your Representative to support legislation, co-sponsor a bill to help get it out of Committee or support the idea.
  • Take a picture. Politicians love to be photographed with their constituents.
  • Be mindful of your statements. Your goal is to become your Representative’s go-to person on kidney and PKD issues. You want to build trust to the point where they say, “What does this constituent have to say about this?”



  • Follow up with a thank-you e-mail. If there were unanswered questions, get answers from the PKD Foundation and follow up with your Representative.
  • Use social media! Post your pictures. Tweet your Representative a thank you. Let people know that you met with your Representative and how great the meeting was.
  • Stay active online. When you see PKD or kidney issues posted online, engage. The PKD Foundation provides form letters on issues that affect patients and families with PKD. Fill those out and send them to your Representatives.
  • Keep your Representative up to date on all important PKD matters. Find their contact information by looking them up online. Your Representatives have webpages with email addresses, Twitter and Facebook pages.

Good luck and remember: You are a great advocate. You are living with these issues and you have the power and the means to educate your Representatives.

Jim Myers is a longtime advocate for PKD and PKD Foundation. After nearly four years of being on dialysis and waiting for a kidney match, Jim got the call earlier this year on April 26. He received his transplant shortly afterward, and continues to advocate for PKD-related legislation and the Living Donor Protection Act.

Read up on our current legislative priorities.


Joe and me at Five Guys Hamburger in Munster 7212016

My buddy Joe Chavez-Mosqueda, raising money for his kidney transplant at Five Guys Hamburgers today! Please check out his page and his blog!  PLEASE SHARE!

Link to Joe’s Page on National Foundation of Transplants:

Link to today’s Benefit Event:

Link to Joe’s Blog:

Joe’s Story: In the mid-90s, Joseph was diagnosed with diabetes, but he spent many years in denial about what the disease was doing to his body. Then in 2009, a year after undergoing weight loss surgery, he learned his kidneys were failing. He was shocked that so much damage had been done to his body, and he became an advocate for kidney health so he could encourage others to take charge of their health. Doctors now say a kidney transplant is necessary.

During such a difficult time, his wife, Christine, has been his rock and by his side every step of the way. Together, he and Christine have four children and nine grandchildren. He is determined to overcome this health battle, as he wants nothing more than to see his grandchildren become adults. Before his health began to decline, he enjoyed long distance cycling to maintain his weight loss, but doctors have strongly encouraged him to retire from this sport. Most recently, he has taken up walking to stay active. After receiving his transplant, he hopes to continue sharing his story to educate others through his experiences with diabetes, hypertension and end-stage renal disease.

The average kidney transplant costs approximately $250,000. And that’s only the beginning. Even with health insurance, which will cover the cost of the transplant, he faces significant expenses related to the surgery. For the rest of his life, he will need follow-up care and daily anti-rejection medications. Post-transplant medications are very expensive, and they’re as critical to his survival as the transplant itself.

You can help by making a tax-deductible donation to NFT in honor of Joseph. If you’d prefer to send your gift by mail, please send it to the NFT Indiana Transplant Fund, 5350 Poplar Avenue, Suite 430, Memphis, TN 38119. Please be sure to write “in honor of Joseph Chavez-Mosqueda” on the memo line.

Thank you for your generosity!

Joe is working with the University of Chicago. He MUST raise $25,000 before they will do the kidney transplant! Please consider donating to my friend! His next fundraiser is at the Chic-fil-a, at the Southlake Mall in Merrillville, IN on August 1st.


KidneyWorks Conference Concludes in D.C.

Paul T Conway and me

Labor Force Initiative Targets Kidney Patients

Patients, Federal Officials, Health and Workforce Data Experts Convene for KIDNEYWORKS™


WASHINGTON, D.C.  The KidneyWorks™ Initiative, a new research and policy collaboration aimed at helping Americans with Chronic Kidney Disease (CKD) who are not on dialysis maintain their jobs and slow their disease, was rolled out recently on Capitol Hill by the American Association of Kidney Patients (AAKP) and the Medical Education Institute (MEI).   An estimated 10% of U.S. adults, more than 20 million Americans, have some degree of CKD, ranging from stages CKD I to CKD V (kidney failure).   Millions of Americans afflicted with the earliest stages of kidney disease are currently in the labor force and successfully hold jobs long before the need for renal replacement therapy (dialysis or a kidney transplant) at CKD stage V.

AAKP and MEI jointly convened the KidneyWorks™ Initiative’s Consensus Conference at the Hall of States Building in Washington D.C. with over thirty national experts in the fields of patient engagement, renal care, health and insurance data mining, labor force data mining, Federal reimbursement, physical exercise, renal social work and vocational rehabilitation.  During the conference, stakeholders identified issues and barriers that interfere with patient goals to stay healthy, remain engaged, continue working and paying taxes. Expert participants formulated strategies and recommendations to help patients slow progression of their disease, successfully manage symptoms, maintain incomes and standards of living and preserve their quality of life.

The results of the KidneyWorks™ Initiative’s Consensus Conference will be a white paper to be issued in late 2016 that will present the experts’ findings and recommendations for Federal, non-profit and private sector policies and programs that will encourage patients to maintain their employment while they manage their illness.  AAKP and MEI plan to present the white paper recommendations to the United States Congress as well to relevant representatives of the Presidential Transition Team for the President-Elect.  The Consensus Conference was the first of several collaborative actions between AAKP and MEI.

“Chronic kidney disease poses great challenges to patients who need and want to work, but they are not insurmountable and no patient should be encouraged to prematurely leave their job, put their aspirations on hold and go on disability unless it is an absolute medical necessity,” stated Paul T. Conway, president of the American Association of Kidney Patients. Conway is a former Chief of Staff of the U.S. Department of Labor and kidney transplant recipient who has managed kidney disease for over thirty-five years.

“KidneyWorks has assembled an exceptionally talented national ‘dream team’ committed to identifying misperceptions and artificial barriers that keep kidney patients from staying engaged in their careers, and developing practical recommendations that will help us effect change and keep people working despite CKD,”  stated Dori Schatell, MS, Executive Director of the Wisconsin-based MEI.

Working with kidney disease can be challenging and symptoms at earlier stages can include fatigue, headaches, nausea, muscle cramps, shortness of breath, and problems sleeping.  All of these can interfere with work, but symptoms are often treatable.  Having a job that provides an employer group health plan or enough income to purchase a private health plan will help ensure that CKD patients who desperately need preventive care will receive it—and will help them stay active and productive.

Participant experts represented some of the most influential Federal, professional and non-profit and private sector stakeholders directly involved in long-term kidney patient health and employment-related issues.

Stakeholders represented at the Consensus Conference included:

Patient and Professional Organization:

American Association of Kidney Patients (AAKP)

American Health Quality Association (AHQA)

American Society of Nephrology (ASN)

Kidney Health Initiative (KHI) – (a collaborative of U.S. Food and Drug Administration and ASN)

Medical Education Institute (MEI)

Renal Physicians Association (RPA)

Federal Government:

Centers for Medicare and Medicaid Assistance (CMS), U.S. Department of Health and Human Services

Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services

National Kidney Disease Education Program (NKDEP) within the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH)

Office of Disability Employment Policy (ODEP), U.S. Department of Labor


Private Sector:

Baxter International


DaVita, Inc.

Dialysis Clinic, Inc.

Fresenius Kidney Care

Northwest Kidney Centers


At the event, AAKP and MEI expressed their appreciation to the sponsors of the KidneyWorks™ Initiative’s Consensus Conference including Baxter International Inc.; DaVita, Inc.; Dialysis Clinic, Inc.; Fresenius Kidney Care; National Renal Administrators Association; Northwest Kidney Centers; Renal Medicine Foundation; and the former ESRD New York Network.


Founded in 1969, AAKP is the largest and oldest independent kidney patient organization in America and is governed by a patient-majority Board of Directors.  AAKP conducts national education programs designed to better inform kidney patients, care-givers and policy-makers about the true impacts of kidney disease, prevention efforts and treatment methods.  AAKP executes a national advocacy strategy, in conjunction with allied kidney organizations, designed to insert the patient voice into proposed policies, research efforts and care deliberations before the Executive Branch and the U.S. Congress so that patient interests are fully represented.


 Founded in 1993, MEI is a national 501(c)(3) non-profit organization dedicated to helping people with chronic diseases learn to manage and improve their health, and a focus on chronic kidney disease.  MEI fulfills its mission by conducting research, developing evidence-based educational materials for consumers and health professionals, and advocating for patient-centered policies.  Tax-deductible contributions can be made through MEI’s website,



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By Jim Myers, Kidney Advocacy Committee Liaison


Social media is a fun and interesting way to communicate.  It is also a great tool for raising awareness for kidney disease! Why use social media?  It is one of the most authentic ways to communicate to your legislators.  Additionally, it is also a great way to amplify your message.  During an average 8 hour day at a kidney table, I might see 50 people.  Over the same period of time on social media, I reach over 10,000 people, sometimes as many as 100,000 persons in a week!


Most elected officials use multiple social media accounts, including Facebook, Instagram, LinkedIn, and Twitter. The form and content of communication is only limited by your imagination. Many kidney organizations have public policy action pages to help you advocate and shape public policy, like this one from the National Kidney Foundation, that also allow you to “tell your story” to your elected officials.

You can use social media to:

  • Inform, discuss, update, and influence others about kidney disease policy and legislation
  • Develop a collective voice and collaborate
  • Share knowledge about kidney disease
  • Influence the behavior and decisions of your elected officials

You can also use social media to invite elected and government officials to join events such as:

There are subtle differences between how each social media platform can be used to reach elected officials.  Facebook is useful in providing information, photos, and video, as well as sending requests and messages of appreciation. Twitter is effective for engaging in a conversation with your elected official.  Commenting on Instagram can help put a face to your name and issue.

Blogs are also a great tool to express your point of view or share an idea. You can use them to create original content, add photos and video, or host an opinion poll.  Free, quick and easy, blogs platforms, such as WordPress and Tumblr, can give you instant visibility. Make sure you ask all your friends to like your blog and Facebook pages, and comments, and to share them. You can also share the page with general public, on other kidney pages, and in kidney groups to raise your circulation.

By establishing constant contact with your elected officials and their staff, you can become a trusted source of information related to kidney issues and legislation. This trusted relationship can help you get attention when sharing content (I like to send my government officials links to posts on the NKF’s Advocacy in Action blog) or when you ask them to co-sponsor a bill.

Using other media to promote a bill or issue

There are several websites that help you prepare, solicit, and transmit petitions that are designed to promote a kidney disease bill or important kidney issue. They include:

No matter what form of advocacy you choose, social media can make you more effective and give you a broader reach than other forms of advocacy.

Questions? Contact me at or

About Jim

James Myers is the Statewide Advocate for the National Kidney Foundation for the State of Indiana.  He is a member of the Kidney Advocacy Committee.  He is the inaugural winner of the 2016 Social Media Advocate Award for the American Association of Kidney Patients.  On April 27, 2016, he received a kidney transplant!


article on advocacy with social media  pic 1 pic 2 pic 3NORA


Region residents turn to social media for organs

Giles Bruce

  • Updated 8 hrs ago



LANSING — Nora Sintich is running out of options.

She’s been on the liver transplant waiting list for 14 years, her condition worsening. She can no longer eat bananas, peanuts or pineapples. She uses a walker to get around.

“I don’t know how to read anymore. I used to be a bookkeeper — I can’t add anymore,” said Sintich, a slight, frail woman of 49 who labors when she speaks. “I have trouble with speech. I can’t pronounce words right. I never knew the liver was so important.”

Then she met a woman who encouraged her to tell her story on social media. Sintich is the opposite of tech savvy — her son equipped her with a personal Facebook page just this past December — but she decided to give it a shot anyway.

Since setting up her page in January, the Lansing grandmother already has received several queries from people interested in donating (donors give a portion of their liver, which regenerates in a matter of months). While the majority were from foreigners offering to sell their livers, a practice illegal in the United States, one came from a woman in Michigan with the same blood type.

As social media proliferates, people on transplant waiting lists are increasingly turning to sites like Facebook and Twitter to find living donors. Social media allows users to broadcast their stories to strangers across the world, at a time when 120,000 Americans await lifesaving transplants.

Dr. Deepak Mital, director of the kidney transplant program at Advocate Christ Medical Center in Oak Lawn, said more and more people on the list at his facility have been taking to social media.

He noted that all living donors have to go through a rigorous evaluation process, meeting with a social worker and psychologist, to ensure they’re doing it for the right reasons.

“We apply the same standards to donors who come through social media as those who came through personal contact,” he said. “You have to make sure there was no coercion, no financial exchange and that this is all on the up and up.”



Gary resident Jim Myers receives dialysis while looking at social media pages dedicated to connecting organ donors with recipients. John J. Watkins, The Times

When Jim Myers, of Gary, started dialysis about five years ago, he was dismayed by all the suffering he saw around him, by the number of people unable to speak for themselves. Active in social media since the days of MySpace, Myers decided to start a Facebook page called Kidney Stories to spread awareness about kidney disease. He now administers about 30 pages for people in need of organ transplants.

“I’ve done all the other stuff: knocked on doors, manned tables. At an event, I might reach 25 to 50 people,” said the former college professor. “On social media, I’m reaching close to 100,000 people a week.”


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It also gives himself something to do during treatment. Myers, 61, has polycystic kidney disease, a hereditary condition that causes cysts to grow on the organs. He does dialysis four times a week, for three hours at a time.








On a recent day at a Dyer dialysis clinic, Myers typed at his laptop with his right hand, his left arm hooked up to blood-filled tubes leading to a machine that filtered the toxins out of his body.

“This is one I opened this week,” Myers said, pointing to his computer screen, his browser open to dozens of pages. “The guy’s from Georgia. I’ve got him up to 119 likes in a couple days.”

Last year, Myers won the inaugural Social Media and Advocacy Award from the American Association of Kidney Patients. “I’m on three transplant lists. I have good doctors that look after me,” he said. “I hope to find my own donor, but I really enjoy helping other people.”

Inspired by her dad receiving a liver transplant five years ago, Laurie Lee, of Cary, Ill., now tries to help others make similar connections. After meeting Sintich recently, she helped set up her Facebook page, Looking for a Liver for Nora.

“Right now, with millennials, they’re altruistic and looking to help people,” said Lee, 35. “And those are the people on social media. There’s a ton of potential.”






A family photograph of Nora Sintich, left, her brother John Medina and her sister Teresa Rivera, who died from liver disease when she was 40. In the photograph from 2008 Nora’s head is shaved after she had brain surgery. Liver disease is hereditary in Nora’s family. Jonathan Miano, The Times \

Sintich is willing to give it a try. Several of her loved ones have been tested to see if they’d be candidates, to no avail. Her condition has progressed, but not to the point where she’d move to the top of the waiting list.

She has a hereditary form of cirrhosis of the liver, a disease that took the life of her sister at the age of 40. She also has hepatic encephalopathy, a decline in brain function, as well as a movement disorder.

“I’ve spent so much time in the hospital, the nurses call me the frequent flyer,” she said.

But her doctors have told her her health would largely return to normal with a successful transplant. If that happens, she plans to volunteer for a Chicago-based transplant organization and her husband, Doug, intends to donate his liver to a stranger.

“My grandma made it to 98. I tell my dad I’m going to beat grandma,” she said. “I fight because I have two granddaughters (5 and 2). I tell my son I’ll be at their college graduation.”







Please help advance new bipartisan legislation that would eliminate barriers to living donation and help increase access to lifesaving transplants. barriers to living donation and help increase access to lifesaving transplants.

  • Kidney health providers and patients commend Congress for today’s introduction of the Living Donor Protection Act of 2016 and urge its swift passage to help the more than 100,000 Americans currently waiting for a kidney transplant.

Every 14 minutes a patient is added to the kidney waitlist and 12 Americans die every day waiting for a kidney transplant

Newswise — Washington, DC (February 25, 2016) — The American Society of Nephrology (ASN) is one of 16 kidney patient and health professional organizations joining together to commend Congress for introducing new bipartisan legislation to increase access to lifesaving kidney transplants.

“ASN commends Rep. Nadler (D-NY), Rep. Burgess (R-TX), Sen. Kirk (R-IL), and Sen. Gillibrand (D-NY) for their leadership in introducing the Living Donor Protection Act of 2015. More than 20 million Americans have kidney disease, and transplantation is the optimal therapy for most patients whose kidneys fail,” said ASN President Raymond C. Harris, MD, FASN. “ASN is proud to endorse this important legislation, which will help eliminate barriers and increase access to transplantation.”

The bipartisan Living Donor Protection Act of 2016 introduced in both houses of Congress today would help increase access to kidney transplants by:
• Protecting Donors: The bill prohibits life, disability, and long-term care insurers from denying or limiting coverage or from charging higher premiums to living organ donors
• Securing Jobs: The legislation clarifies that living organ donors can use FMLA time to recover from donation surgery and maintain their job security
• Educating Americans: The bill directs HHS to educate Americans about living organ donation

“More than 100,000 people are on the waiting list for a kidney transplant,” said ASN Secretary-Treasurer and Public Policy Board Chair John R. Sedor, MD, FASN. “Congress can help them by enacting commonsense legislation that promotes organ donations by ensuring insurance coverage and job security for donors.”

Many patients will die waiting for a kidney transplant. In 2014, 101,168 patients were on the waiting list for a kidney but only 17,106 transplants were performed. Transplantation is the optimal therapy for most people with kidney failure, and on average is a more cost effective treatment compared to hemodialysis.

If the Living Donor Act increases donation by 536 donors (10% of the number of living donor transplants in 2014) every year for 10 years, the Medicare program could save between $565 million and $1.2 billion.

16 kidney health organizations urged Congress to support this legislation during the 2015 Kidney Community Advocacy Day. Their efforts helped garner Senate sponsorship for the bill and propel the vital legislation’s introduction in both houses of Congress.

To learn more about the Living Donor Act of 2015, please visit and follow #LivingDonorAct on Twitter.

Kidney Health Organizations Advancing the Living Donor Act of 2016
• Alport Syndrome Foundation
• American Association of Kidney Patients
• American Kidney Fund
• American Nephrology Nurses Association
• American Society of Nephrology
• American Society of Pediatric Nephrology
• American Society of Transplant Surgeons
• American Society of Transplantation
• Home Dialyzors United
• IGA Nephropathy Foundation of America
• National Kidney Foundation
• National Renal Administrators Association
• NephCure Kidney International
• Oxalosis and Hyperoxaluria Foundation
• Polycycstic Kidney Disease Foundation
• Society for Transplant Social Workers

ASN Secretary-Treasurer John R. Sedor, MD, FASN is available to discuss the Living Donor Protection Act of 2016. Please contact Kurtis Pivert at 202-699-0238 or to arrange interviews.




Born on September 3, 2010
  • Short Description
    The diary of a 5 year old little boy fighting a rare syndrome called Prune Belly.
  • Long Description
    Oakley was born on 9/3/10. He was born with a variant of Prune Belly Syndrome which includes kidney disease.

    Since he has been born, I have made it my calling to help advocate for kidney disease and the importance of organ Donation.

    At 20 weeks gestation, Oakley’s mom received news from her doctors that no mother should ever have to hear. She will never forget hearing the life-changing news: “We see some very bad things going on with your baby’s kidneys and bladder. He might not take his first breath.” She was told that her baby had the worst stage of Bilateral Hydronephrosis (water/urine on both kidneys) and Posterior Urethral Valves (PUV). In utero, his bladder was as large as his head. With little encouragement about Oakley’s chances of survival, doctors encouraged an abortion.

    Oakley’s mom chose life.

    Oakley was born at 37 weeks gestation, and his diagnosis changed from Posterior Urethral Valves (PUV) to a variant of Prune Belly Syndrome. Prune Belly Syndrome affects 1 in 40,000 babies and presents with undescended testicles, kidney, bladder, and stomach muscles. Most babies with this condition do not make it to their second birthday. Oakley has more stomach muscles than most children with this syndrome, so his diagnosis is considered to be a variant, and this has enabled him to sit and walk.

    Oakley has undergone several surgeries, and his progress has exceeded doctor’s expectations. He celebrated his fourth birthday this fall.

    Rather than dwelling on the things that Oakley may not be able to do, his family looks forward to all the things he will be able to do.

    The miracle baby whom no one thought would survive has lived against the odds and made a positive impact on so many people in his life.

    Oakley is fighting an incurable monster and could really use your support.

    He has been through more in his short 4 years than most adults.
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