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

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

leilah-sampson-and-kevin-longino-9-28-16As 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.

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Ask your U.S. Representatives to co-sponsor the immunosuppressive drug coverage extension!

On September 22nd, Representatives Burgess (R-TX), Kind (D-WI), Harper (R-MI), Meehan (R-PA), Herrera Beutler (R-WA), Cooper (D-TN), Griffith (R-VA), and McDermott (D-WA) introduced the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139).  These sponsors seek to provide a safety net for kidney patients who lack health coverage for the immunosuppressive medications required to help maintain their transplant.

In response to the introduction of this legislation, NKF’s CEO, Kevin Longino, stated “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.  Helping transplant recipients obtain the daily medications necessary to reduce the likelihood of organ rejection is not only what’s best for the patient long-term, it’s what best for Medicare long-term.”  He continued, “Congress previously eliminated the 36-month time limit for coverage of immunosuppressive drugs for aged and disabled Medicare beneficiaries. Now it’s time to extend the same benefit to all Medicare beneficiaries under the age of 65 if they do not otherwise have coverage.”

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 may face the challenge of finding affordable coverage that allows them to obtain medications required to reduce the likelihood of their body rejecting their new kidney.

Medicare spends $2,683 per transplant recipient for immunosuppressive drugs under Part B compared to an average of $84,450 on a dialysis patient. Without any doubt, Medicare’s cost for these medications (and for kidney transplantation in general) is far less than the cost of annual dialysis.  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.

We need you to write your legislators to tell them that you support this legislation and want them to join as a co-sponsor.  Help build momentum for this important legislation.   Show your support for transplant patients and send your legislators a letter showing your support for the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act.

Click here to see the National Kidney Foundation’s statement.

If you would like to tweet your Representative or post on their Facebook pages supporting this legislation, below are some suggested comments:

To find your legislator click here.

For Twitter:

@(Legislator’s handle) Pls cosponsor H.R. 6139 to ensure transplant success for kidney patients @NKF #ImmunoCoverage – Name, Town

For Facebook:

I stand with @NKF and urge you to co-sponsor the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139).  Please support kidney patients by maintaining post-transplant coverage that will ensure their best chance of success post-transplant.

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The ESRD Choice Act of 2016 Passes the House

capitol-buildingOn September 21, 2016, the House of Representatives unanimously passed H.R. 5659, the Expanding Seniors Receiving Dialysis Choice Act or ESRD Choice Act.  The 423-0 vote included 242 Republicans and 181 Democrats.

This is a victory for kidney disease patients.  Thank you to the nearly 700 people who supported kidney patients and NKF by reaching out to their Representatives.

Starting in 2020, this bill will give individuals with kidney failure access to Medicare Advantage (MA) plans. It will also require education for individuals with end stage renal disease (ESRD) to aid them in making informed decisions about MA coverage.  Since the MA program was created in 2003, ESRD patients are the only group specifically denied the option to enroll in these plans (currently Medicare beneficiaries who have Chronic Kidney Disease can enroll in MA and can remain in their MA plan after they progress to ESRD). Removing government restrictions that prevent ESRD patients from enrolling in MA plans will allow ESRD beneficiaries the same freedom of choice in coverage as other Medicare enrollees. Allowing ESRD patients to select these plans may help some patients minimize their out-of-pocket expenses and access additional benefits that some MA plans provide like transportation and dental.

Next steps:  While the House has passed this bill, it still needs to be considered in the Senate.  At this time, there is no Senate companion bill to H.R. 5659 but given the overwhelming support in the House, it is likely that there will be movement on this issue later this Congress.  When this happens, we will need your continued support to ensure that the Senate shows the same level of support!

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A Busy August Congressional Recess for the Kidney Advocacy Committee!


Sonya Cochran with Rep. Mullin

During Congress’ “August Recess”, representatives of the National Kidney Foundation and NKF’s Kidney Advocacy Committee (KAC) met with the offices of 21 U.S. Senators and Representatives.  Seven of those meetings included face to face discussions between KAC and their Senators and Representatives.

During these meetings, KAC liaisons and other NKF representatives discussed the Living Donor Protection Act (H.R. 4616 and S. 2584) and proposed legislation to promote early detection and treatment of chronic kidney disease.

As a result of these meetings, many committed to supporting the Living Donor Protection Act and NKF’s proposal to improve early detection and treatment of chronic kidney disease.  Since Congress returned on September 6th, Chairman Grassley (R-IA), Sen. Menendez (D-NJ), and King (I-ME) and Rep. Gwen Moore (D-WI), Rep. Kevin Yoder (R-KS), and Rep. Fitzpatrick (R-PA) have signed on as co-sponsors of the Living Donor Protection Act.


Ted Garding, Jim Elkin, Christi Krautbauer, Jennifer Lauerman, Matt Rognstad with Sam Mills (Sen.Franken)

Will you help these advocates by writing your legislators to support kidney patients, living organ donors, and their families?  Visit our Advocacy Action Center to write to your Congressmen and Senators asking for their support for these important priorities.

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FDA’s Patient-Focused Drug Development Initiative Meeting

If you’ve received an organ transplant the Food and Drug Administration (FDA) wants to hear from you.  On September 27, 2016, FDA will hold its first to gain insight directly from patients about their experiences living with organ transplants and the medications they take to prevent organ rejection and manage related conditions.  This information will help FDA to consider issues important to patients when reviewing and considering approval of new therapies for transplant patients that may be developed in the future.  Input from these meetings will be incorporated into an official FDA report titled the Voice of the Patient.

If you are interested in participating live or via webcast here are the registration details: The public meeting will be held on September 27, 2016, from 9 a.m. to 5 p.m. Please register here for the meeting by September 20, 2016:

To keep up the momentum after the meeting, the National Kidney Foundation plans to submit written comments on this topic to FDA and we want to work with you to develop those comments. If you plan to attend the meeting either in person or via webinar, please email us at

You can learn more about the participation in this meeting and the questions you will be asked here:

You can also find general information about the patient focused drug development initiative and the Voice of the Patient reports here:

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One Family’s Story on Medicare Advantage

In 2013 my son was diagnosed with ESRD at the age of only 23.  Once diagnosed, we had to make many decisions in a very short period of time.  They included preparing for dialysis, choosing a dialysis center and type of dialysis, training for home hemo dialysis, starting dialysis, surgeries, medication management, ordering of medical dialysis supplies, getting on the transplant waitlist, searching for and ultimately finding a non-related living kidney donor, signing up for social security income, understanding and signing up for Medicare and Medicaid, understanding how Commercial Group Health insurance, Medicare Advantage plan, and Medicaid all work together.  Then post-transplant, a whole new set of issues faced us, like continued medical follow up, medical testing, immunosuppressive medications, social issues, and my son finding a job.

When he was diagnosed my son had coverage under our Commercial Group Family Insurance plan in Pennsylvania.  We had a good primary care physician that we wanted to retain as the controlling entity in our son’s care.  This doctor was “core” to guiding and overseeing the medical needs of our son.  It was important to us to remain in the network where our primary care physician was located.  The physician was a participant only in one of the insurance networks in our area, dictating where our medical insurance coverage had to remain.

In a few short years, the Commercial Group Family Coverage was going to go away as my son aged.  A Medicare Advantage Plan within the same health care network was imperative.  The key here was “securing” the Medicare Advantage plan.  Typically, Medicare Advantage plans exclude members with ESRD.  You see, our situation is unique. The ability to secure our Medicare Advantage plan was solely the result of my son already having insurance coverage with the same healthcare network. The network administrator allowed migration into the Medicare Advantage plan within the network because we were already there through the Commercial Family Group Insurance Plan.  So when we signed up for Medicare, we specifically requested the Medicare Advantage plan.

Our experience with the Medicare Advantage Plan:

Since securing the Medicare Advantage Plan our experience has been terrific.  We found excellent physicians easily within our list of network care providers.  In fact, the customer support offered through the Medicare Advantage Plan is better than that given through our Commercial Group Family Coverage plan.  We found the health care customer service representatives with the Medicare Advantage plan to be better trained in answering questions related to care and billing than those on the Commercial Group Coverage Plan side of our insurance.  The Medicare Advantage plan has definitely been a welcome cost saving decision for my son because of the many added extensions in coverage offers.

How he has made use of the additional benefits?

There are myriad benefits contained within the Medicare Advantage plan.  We learned of these services through the membership booklet provided to us at the time of enrollment.  The health plan customer service representative was extremely informative.  Many times the representative located the providers and services for us.  They conducted the outreach and arranged for providers to contact us.

We have enrolled in a health club—it is free and offers skilled personal training which recognizes the limitations of being an ESRD patient.  Our son has also used the dental and vision care coverage offered through the Medicare Advantage plan.   Prescription medication coverage has been essential and the Medicare Advantage plan benefits are great.  He has had no issues with securing and paying for his medications.  The plan has made it easy and convenient to use their services.

 Barriers at transplantation or trouble accessing in-network providers?

The reason our primary care physician is able to successfully manage and oversee the care of my son is the health care network uses an electronic information portal.  All doctors, hospitals, laboratories and even the patient can share and view data.  The only exception to this was while on dialysis, even though our dialysis center and nephrologist were considered “in-network” providers, they were not on that electronic system for medical record sharing.  To compensate, each month the caregiver (me) would fax an update of lab results and clinic visits to the primary care physician which would then be scanned into my son’s electronic file and thus viewable by all parties involved with his care in our Medicare Advantage Plan network.  Additionally, the primary care physician’s office was located in the same building on the same floor as the nephrologist’s office and they communicated on a regular basis regarding my son’s progress and care.

The other concern we experienced was being able to wait list at multiple transplant centers.  Being in a Medicare Advantage plan, we had to accept the limitation of using only the doctors and facilities within our network of care.  Many people might find this a true barrier to finding their “gift of life” transplant. We accepted this requirement. Luckily, we reside in a large metropolitan area and with a good Medicare Advantage Plan Network, so we had no trouble in gaining access to in-network providers.  Our primary care physician played a key role in seeing we were provided with top notch medical care.

While Medicare Advantage plans are not all equal and may not be the best choice for every ESRD patient we are happy with our decision to enroll our son in this plan.  We hope other dialysis patients will have this option in the future, which is why we support the ESRD Choice Act (H.R. 5659).

Bobbie ReedAbout Bobbie Reed

Bobbie became a Kidney Advocacy Committee liaison after her eldest son, Alex, was diagnosed with ESRD shortly after graduating from college in 2013.


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Meeting Your Legislators in August!

By Haley Newkirk, Kidney Advocacy Committee Liaison

Newkirk, Haley Sen Gardner 8.10.15This week, Congress began Recess and will be home in your state until September 6th.   This will provide us the perfect opportunity to meet with our Senators and Representative in their district offices and continue to educate them about issues related to kidney disease.

Last year, I was able to meet with staff members for my Representative and both Colorado Senators over the course of a few months. Although I was not able to meet directly with the legislators, I found that their staffs were engaged and curious about the issues. One of the many benefits of these local meetings is that the staff really know the people and communities they work in. One staff member had spoken to a Denver man who had lost insurance coverage for his transplant medications that same morning, and she thanked us for helping her understand how critical it was that she help him find the resources he needed to avoid rejection and keep his kidney.

No meeting was quite like another. One staff member was a health aide, and we spent half an hour discussing specific medical issues in our state and improving supports for those affected. Another staff member was focused on public outreach and spoke with my NKF region’s Executive Director, Shannon Clark about NKF’s KEEP Healthy screenings and how to better engage the African American community. Bringing the big, broad federal initiatives close to home with our personal stories and those of our fellow constituents provokes real conversation and ignites legislators’ interests in real policy changes.

Teaming up made a big difference for me. I was fortunate enough to have Shannon come to all three meetings. Not only was she a great support for my first-timer nerves, she contributed very useful, relevant details about specific events and programs in our state. We were able to debrief and learn together from one meeting to the next, and it helped me build a relationship with my local NKF office that has stayed strong ever since.

I hope that you will join me this summer in this important opportunity to ensure that our legislators understand the impact their work in Washington, DC has on our lives in their home states—it’s easier than you think!

Tips on setting up a District meeting:

  1. Look at your legislator’s website (House/Senate) and locate the closest district office to where you live or work.
  2. Email their scheduler (often through their website) and ask to schedule a meeting with your legislator in their district office. Depending on the form, you may have the chance to briefly share a little about your personal involvement. If you have any problems, please contact NKF’s staff at  They will be able to assist you!
  3. Let NKF’s advocacy team know once a meeting has been scheduled so that they can provide you with talking points on legislative priorities, fact sheets on kidney disease in your state, and other helpful materials. They can be reached at
  4. Work with NKF’s advocacy staff to let your local NKF office know about any scheduled meetings. If available, they may want to join you for meetings—but if they are unable to attend they still may be able to provide you with details about programs and events happening in your state or region, as well as providing some additional team support!
  5. Confirm your meeting a few days before the scheduled date.

Tips during your meeting:

  1. Be prepared with background on the elected official, thoughtful arguments, specific points, good data, and a clear agenda.
  2. Tell your personal story. You want to be remembered and they do want to hear your story.  Limit your story to about 2 minutes, and explain why the policy issue you are there to discuss is so important to you personally and how the legislator can make a difference for you and others like you.
  3. Numbers are your friend. Legislators and their staff love statistics as much as a constituent’s story.  How many people in your state have kidney disease or are on dialysis? How many are on the wait list?  What is the cost of dialysis vs a transplant after the first year?  NKF can provide you with all of the necessary information for your meeting.
  4. Keep it simple. They may not know much about or have real life experience with chronic kidney disease, dialysis, donation, and transplantation.  Avoid acronyms, vernacular, and keep the language you use as basic and as non-technical as possible.
  5. Be respectful to the legislator and his or her staff members.
  6. Leave behind materials that reiterate the points you made in your meeting. NKF has a set of materials that you can use for this purpose.
  7. Leave your contact information so your legislator or their staff can contact you with any questions.

After the Meeting:

  1. Promptly follow-up with an e-mail to your legislator’s office to reinforce your comments. Thank them for their time and provide any additional information that you agreed to get to them.  Use this opportunity to cultivate your relationship.
  2. Report to NKF to let us know how your meetings went. Did they ask any questions you were unable to answer?  Did your Members voice their support?

Remember – you are a constituent and they work for you!

About Haley Newkirk

Haley is almost eight years post-transplant and an active advocate for kidney patients and families with the National Kidney Foundation. She and her fabulous kidney, Stan, enjoy mountain adventures, Colorado sunshine, and tacos.

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Patients to Lead National Research Priorities for Kidney Disease

The National Kidney Foundation announced today that it will be organizing the first-ever Patient Centered Outcomes Research Stakeholders’ Conference.  This conference will bring together 100 patients, caregivers, stakeholders and academics to identify patient-centered research priorities—and challenges—for kidney disease.  It will allow patients with chronic kidney disease, for the first time, to be at the forefront of deciding national research priorities.  The conference will be held in conjunction with the National Kidney Foundation Spring Clinical Meetings in Orlando during April 2017.

The Stakeholders’ Conference will be facilitated by both a patient and researcher and will feature patient, caregiver and researcher panel discussions and break-out group sessions.  Attendees will gain insight into the experiences of patients, caregivers and researchers; learn more about the importance of patient centered outcomes research (PCOR), and identify best practice strategies for actively engaging patients in kidney disease research.

“The Stakeholders’ Conference will help address the gap in kidney disease research,” said Kathryn Pucci, vice president of education for the National Kidney Foundation (NKF).  “Our goal at NKF is to transform the process in which the healthcare community views patients from passive, to active and engaged partners in the healthcare decision making process, and centers them as key collaborators in research and in policies which directly impact them.”

As part of NKF’s commitment, NKF has also committed to provide a minimum of $40,000 towards funding a 2018 Kidney Disease Patient Centered Research Grant.  The grant will focus on the top kidney disease priorities identified by patients at the Conference.

The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.  If you have questions, or are interested in participating in the Conference, please visit

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NKF Signs Letter Opposing Proposed Elimination of State Health Insurance Assistance Programs

Understanding Medicare can be confusing and overwhelming.   Eligibility dates, options for supplemental plans, Advantage plans, and prescription coverage can be daunting.  State Health Insurance Assistance Programs (SHIPs) have helped Medicare beneficiaries navigate the complexities of the Medicare system. On June 16th, the Senate Appropriations Committee approved their FY 2017 budget, which would eliminate funding for State Health Insurance Assistance Programs (SHIPs).  This move would result in 55 million people being left without access to the only free and personalized counseling service to help Medicare beneficiaries.

Many kidney patients rely on the assistance that SHIPs provide. SHIPs offers free advice on how to resolve billing, fraud and abuse issues, choose from an array of drug and health insurance plans, challenge coverage denials, and receive financial subsidies for premiums, co-payments and deductibles. They also provide personalized counseling and host Medicare enrollment clinics, informational meetings, and answer questions over toll-free telephone help lines.

In 2015, the 3,300 SHIPs served more than seven million Americans, through more than 15,000 counselors in all 50 states, Puerto Rico, Guam, DC and the Virgin Islands.  SHIPs offer increasingly critical services that cannot be supplied by 1-800 MEDICARE, on-line or written materials, or other outreach activities. Approximately one-third of referrals to SHIP originate from Medicare Advantage and Part D prescription drug plans, local and state agencies, the Centers for Medicare& Medicaid Services, the Social Security Administration, and members of Congress and their staff.

The National Kidney Foundation (NKF) wants to protect this important service for all Medicare recipients.  Therefore, NKF and other patient advocacy organizations have signed on to a letter to express their opposition to the Senate’s budget cut and are asking the House to, at a minimum, keep SHIP funding at its current level.  This letter was sent to key members of the U.S. House of Representatives and was authored by the National Council on Aging.

If you have ever used a SHIP, please include your story in the comment section below.  Also you can write your U.S. Representatives an ask them to act to maintain funding for SHIPs through the Medicare Rights Center

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Kidney donation should be a blessing, not a curse! Support the Living Donor Protection Act!

By Cynthia Puryear

I will never forget the day or my exact location when I received the call from my sister in Arkansas telling me she had taken our mom to the doctor, and it wasn’t good news. It was my shocking introduction to chronic kidney failure, and my mom was slowly progressing to End-stage Renal Disease (ESRD). It was a blessing that our mom had no other ailments or serious medical conditions, so we were able to move forward with the transplantation discussions. She also had 10 children willing to donate a kidney. Out of 10 children, I was going to defer to my siblings to donate since I had a toddler. Fast forward, many of siblings did not get beyond the pre-screen for various reasons. Ultimately, there were only two matches, and one healthy enough to donate – me! My Christmas gift to my mother was a new kidney.

Why Living Donation Matters!

My mother was fortunate enough to receive a transplant from a family member, and never had to be on an organ waiting list. Sadly, many others are not as lucky. In hindsight, did I think about what that would mean for me in the future? Never. Would I do it all over again? Absolutely yes, and without hesitation! Did I ever think that if I needed insurance in the future, I would be discriminated against as an organ donor? Absolutely not! But sadly, discrimination against organ donors is very real with higher premiums or even denial of insurance based solely on their donor status.

Contact Your Congressman to Support the Living Donor Protection Act (H.R. 4616/S. 2584)!

Help us today by contacting your congressman! During February, the Living Donor Protection Act was introduced in Congress to protect living organ donors by prohibiting insurance companies from charging higher premiums, and from denying or limiting life, disability and long-term care insurance to living donors (the Affordable Care Act prohibits discrimination in the availability or pricing of health insurance), and also provides Family and Medical Leave Act protection. I’ve heard some of the discrimination stories – insurance challenges, not enough leave time, and more. With over 100,000 people waiting to receive a kidney transplant, we cannot risk losing potential donors. There is a great need for living donors, and we must help protect potential donors and make this process simple by assisting them in their efforts to save another’s life. We’re talking about the gift of life to another individual!

As a living donor, this is very personal because potential donors may not know the cost repercussions and discrimination they may incur post donation. Now is the time to move the Living Donor Protection Act forward in Congress. Take a look at the U.S House of Representatives sponsors, and U.S. Senate sponsors. If your congressman is a sponsor, send them a thank-you note. If they are not a sponsor, visit our Advocacy Action Center and ask them to support this important legislation.

Get Active on Social Media!

One of the most powerful ways to educate elected officials and raise public awareness about the Living Donor Protection Act is to share our story through social media.  The power of social media gives us “real time” and “instant” opportunities to help amplify this great life-saving message by articulating the need to affect public policy and get our elected officials involved.  So, send a tweet, or post a Facebook message to educate your elected officials on the Living Donor Protection Act, kidney disease, and invite them to a local NKF event.

About Cynthia

Cynthia Puryear is a living donor and is an Executive Committee member of the NKF Living Donor Council, and holds an appointment on the Advisory Council on Organ Transplantation (ACOT).

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