Kidney Advocacy Victories in 2016

Advocating relentlessly on behalf of kidney patients the National Kidney Foundation (NKF) is proud of the accomplishments we have achieved in advancing policy solutions that benefit people with kidney disease.   Our success would not be possible without you, so as we approach the beginning of a new year, we wanted to take the time to review our accomplishments, celebrate, and thank you for all your hard work.


Organ Donation and Transplantation Reforms

donation-saves-lives-child-photoThis year, NKF worked closely with Congress to introduce two key bills to make it easier for kidney patients to get and keep a kidney transplant.

The Living Donor Protection Act (H.R. 4616/S. 2584) protects living organ donors and removes barriers to donation including discrimination in obtaining life, disability or long-term care insurance and from job loss.

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139/S. 3487) extends Medicare coverage for immunosuppressive medications indefinitely and requires that group health plans maintain this coverage, ensuring kidney recipients have access to these lifesaving medications.

We will work closely with Congress in the new year to reintroduce and pass these bills.

White House Organ Summit


Kevin Longino, CEO of NKF and Dorry Segev, Associate Professor at Johns Hopkins’ School of Medicine

At the request of the Obama Administration, NKF CEO Kevin Longino and Board Member Dr. Matt Cooper, participated in the White House Organ Summit in June.  The Administration and stakeholders announced a new set of actions that will improve outcomes for individuals waiting for organ transplants and improve support for living donors.  During the Summit, the National Kidney Foundation announced a new collaboration with Johns Hopkins University and Novartis to nationally launch the Live Donor Champion Program.  The Live Donor Champion Program aims to overcome common barriers to finding a living kidney donor.  It will teach people how to use their own personal connections and social networks to raise awareness about the need for kidney donors; and help to identify potential live donor candidates for a family member, friend or themselves.

21st Century Cures Act

On Tuesday, December 13th the President signed into law the 21st Century Cures Act (H.R. 34).  This legislation includes a provision that allows dialysis patients the option to enroll in Medicare Advantage plans. Patients will be able to access these plans effective on January 1st, 2021, this timing will allow us the opportunity to work with the new Administration to improve Medicare Advantage plans to better meet the unique health care coverage needs of end-stage renal disease (ESRD) patients. Additionally, the 21st Century Cures Act will enable patient self-management of chronic disease through telehealth and health information technologies, and works to address racial health disparities.

This legislation will also invest $4.8 billion in the National Institutes of Health (NIH) for research on drug addiction treatment, chronic disease research, and mental health treatment.

21st Century Signing.PNG

New FDA Kidney-Friendly Food Labeling

On May 20, 2016, the FDA announced its final changes to the Nutrition Facts Label found on packaged foods.  The new labeling requires food manufacturers to list the amounts of potassium and calcium on the nutrition label beginning July 28, 2018.  This is not only great news for the general public looking to make healthier food choices, but a great win for kidney patients who often find it challenging to know how much potassium and calcium (minerals that kidney patients often need to limit) are in the foods they buy.

NKF has a long history of advocating for clearer food labeling.  This year our efforts have included testifying at an FDA hearing on the topic, submitting comments in response to the proposal, teaming up on the issue with the American Academy of Nutrition and Dietetics, and building a kidney community coalition to support these changes.

Improvements in the Medicare Dialysis Facility Star Ratings Program

Carrying on our efforts from 2015, NKF was successful in working with the Centers for Medicare & Medicaid Services (CMS) to change its Dialysis Facility Compare Star Ratings Program to make it more in line with how kidney patients want to receive information about the quality of care provided in dialysis facilities located where they live and travel.  Patients have commented that they prefer to see star ratings assigned based on how well the facility delivered care rather than having stars assigned to facilities based on a curve –  like high school students whose test scores are based on how well they did in comparison to their peers.  The new way CMS will assign star ratings better ensures that facilities that have only insignificant differences in performance compared to other facilities will still receive the star rating they deserve.  CMS has also followed another recommendation made by NKF to include patient reported measures into the star ratings – these new measures are expected to be added to the program in 2018 and will be based on patient responses to a large national survey.

Medigap Reform 

In Idaho, NKF met with success when the Department of Insurance released reforms to Medigap insurance which will prevent Medigap issuers from denying or limiting Medicare supplemental policies, due to health status, conditions, or claims experience.   It will cap the price for these policies at no-more-than 150% of policies for those over age 65, until the policyholder becomes 65.  The rule will also allow those who successfully appeal their denial of Medicare Part B benefits to receive the full six-month grace period to enroll in Medigap. The rule is pending approval by the Idaho legislature in 2017 and is expected to pass and become effective this Spring. Idaho will become the 28th state to offer Medigap plans to ESRD patients.

NKF also supported H.R. 6265, the Medigap Consumer Protection Act, which would, nationally, end the discriminatory treatment of Medicare beneficiaries under age 65 who have been denied access to Medigap policies based on preexisting conditions.   The Medigap Consumer Protection Act would help all Medicare beneficiaries with end-stage renal disease (ESRD) or who are disabled gain access to the supplemental coverage they need.

Senate Finance Committee’s Chronic Care Legislation

On January 29th, NKF released comments on the committee’s chronic care policy options white paper. The working group, chaired by Senator Isakson (GA) and Senator Warner (VA), made numerous proposals to improve the care of Medicare beneficiaries with chronic conditions and to lower healthcare costs.  This proposal was later introduced in the Senate as S. 3504, the CHRONIC Care Act.

NKF was pleased with proposals to improve the care of individuals with ESRD who are on dialysis, and urged them to include further reforms to improve care of individuals with chronic kidney disease.  Among our key priorities included in the legislation were: expanded access for patients to receive healthcare services using telehealth, including allowing home dialysis patients to use telehealth technology to “visit” with their nephrology practitioners in their own homes or at a nearby dialysis facility once a month, permanently authorizing Medicare Chronic Special Needs Plans, and permitting Medicare Advantage plans to tailor benefits offered to better meet the needs of people with chronic conditions.

Increased Funding for Kidney Disease Research and Transplantation

During 2016, NKF continued in its push to increase appropriations funding for kidney disease programs.  Of particular importance were the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), HRSA Division of Transplantation (DoT), and the CDC’s CKD program.  NKF was able to assist in increasing or keeping funding stable for these programs in proposed FY’17 appropriations legislation.  For now, funding was kept at FY’16 levels until April 28th due to Congress’ passage of a Continuing Resolution.

The 3rd Annual Kidney Patient Summit

Heller Senate Floor in Tie.PNGOn March 8th, 100 patient advocates from NKF and other kidney patient organizations met with 180 of their legislators and health care policy staff on Capitol Hill to discuss important strategies for better kidney care in the U.S.  In addition, more than 4,125 people took action to support this effort from home by sending letters to Congress, 180,000 people read tweets about the summit, and 39,000 people read posts on Facebook.   A direct result of this summit: nearly 200 lawmakers co-signed a Congressional “dear colleague” letter in support of increased NIDDK funding and 22 Representatives signed onto the Living Donor Protection Act in April.

Patient-Centered Outcomes Research Stakeholders’ Conference

NKF secured funding to hold the first ever kidney Patient-Centered Outcomes Research Stakeholders’ Conference.  The conference will bring together kidney patients, caregivers, stakeholders and academics to identify patient-driven national research priorities. The conference co-chairs, Kidney Advocacy Committee liaison, Derek Forfang, and member of NKF’s Council of Nephrology Social Workers (CNSW), Teri Browne, PhD, MSW, NSW-C, will start this necessary conversation about the importance of involving kidney disease patients and caregivers as active members in the research process.  The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.  The Conference will be held in conjunction with the National Kidney Foundation Spring Clinical Meetings in Orlando Florida during April 2017.  Learn more about the conference by clicking here.

Kidney Advocacy Committee (KAC) Expansion

kac-growthSince its founding a year and half ago, KAC has grown exponentially in both size and action.  In the last  year, it has expanded by 250% to 158 patient advocates.  KAC members have served on numerous panels held by federal and state regulatory agencies, such as the Food and Drug Administration’s (FDA) panel on the Patient Focused Drug Development Initiative.  Members have been nominated to serve on the United Network for Organ Sharing’s (UNOS) Region 9 Minority Affairs
, the


Kevin Longino and Leilah Sampson at FDA

Health Resources and Service Administration’s (HRSA) Advisory Committee on Organ Transplantation, and the Department of Defense’s Peer Review Panel on FSGS.  They have been featured in major publications, such as Ebony, and numerous hometown newspapers.  They also held approximately 250 meetings with their legislators in Washington, D.C. and in their home states.

Since 2015, KAC has:

  1. Strengthened NKF’s visibility as a patient-centered organization by becoming patient spokespersons,
    building relationships with local and national media outlets, and

    Kevin and Jeannie Seldner & Rep. Kevin Yoder District Meeting Oct 2016.jpg

    Rep. Yoder (R-KS) with KAC liaisons David and Jeannie Seldner

    representing the patient voice at numerous external conferences and meetings within the kidney health and broader medical community

  2. Developed and fortified NKF partnerships with Members of Congress to make kidney care a national priority and advance NKF’s public policy priorities
  3. Propelled forward NKF’s strategic plan around awareness, prevention and treatment of kidney disease by participating in NKF events and programs and providing input on NKF’s patient and public materials.

Our goal during the next Congress is to expand KAC to include advocates in every Congressional district!  To learn more about KAC or to become involved, click on this link.

Advocacy Communications & Outreach Success

NKF’s advocacy outreach had a landmark year.   In 2016, advocacy emails reached an average of 93,000 people compared to 68,300 in 2015.  Advocates sent 19,600 emails to Congress, compared to 4,900 emails in 2015 championing many needed improvements in kidney care.   On twitter our reach expanded from 121,000 in 2015 to 234,000 this year.  Our Facebook messages reached more than 675,000 people and the Advocacy in Action blog was read by 20,800 unique viewers.


While we have made great strides this year in passing policy changes that will improve the care and lives of kidney patients, we will continue to face many existing and new challenges next year.  However, we won’t be successful without your support. Please visit our Advocacy Action Center and become an advocate to receive important alerts on contacting your Members of Congress about policy changes needed to prevent, detect and treat CKD early, to improve access to high quality kidney care and medications, and to increase access to kidney transplants.

NKF primarily relies on public donations, including the people we serve—patients, family members, friends and others to accomplish our mission please consider donating to help support our advocacy initiatives and other important work in 2017.

Stay tuned next week for a reveal of our full list of 2017 top Advocacy priorities!


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Congress passes the 21st Century Cures Act

The National Kidney Foundation (NKF) congratulates Congress on passing H.R. 34, the 21st Century Cures Act.  Passing the House and Senate by overwhelming votes, this legislation makes significant reforms and investments in health care.

For kidney disease patients, this legislation includes a provision that allows dialysis patients the option to enroll in Medicare Advantage plans.  Thousands of emails from NKF patient and professional advocates were sent in support of allowing dialysis patients the same opportunity as other Medicare beneficiaries to enroll in these plans and we are happy to acknowledge that your efforts paid off.  Patients will be able to enroll in these plans effective on January 1st, 2021.  While a few years away this allows time to implement changes to the Medicare Advantage program to ensure the plans are ready to support the healthcare needs of dialysis patients. Additionally, the 21st Century Cures Act will enable patient self-management of chronic disease through telehealth and health information technologies, and address racial health disparities.

Over the next ten years, the 21st Century Cures Act also will invest $6.3 billion in drug addiction treatment, chronic disease research, and mental health treatment, including $4.8 billion in additional funding for the National Institutes of Health (NIH).  It will also promote personalized medicine by providing authorization and funding for the President’s Precision Health Initiative.  The Cures Act also provides $500 million in additional funding for the Food and Drug Administration (FDA) and streamlines regulations for the review and approval of medical devices and medications, including prompting FDA to create a patient-focused development guidance that will expand patient experience input during the approval process – such as quality of life, treatment impact, and patient treatment preferences.

President Obama has announced he will sign the legislation.

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Idaho Takes a Leading Role on Medigap Reform

Exciting news for kidney disease patients in Idaho to be thankfuldeen_pic for this holiday season!

Idaho released its final reforms on Medigap insurance, which will make large strides towards helping give end stage renal disease patients (ESRD) under age 65 new options to get medical insurance coverage.  This new policy by the Idaho Department of Insurance, titled the “Rule to Implement the Medicare Supplement Insurance Minimum Standards Model Act,” will prevent Medigap issuers from denying or limiting Medicare supplemental policies, due to health status, conditions, or claims experience.   It will cap the price for these policies at no-more-than 150% of policies for those over age 65, until the policyholder becomes 65.  The rule would also allow those who successfully appeal their denial of Medicare Part B benefits to receive the full six-month grace period to enroll in Medigap.

Deen Vetterli, the National Kidney Foundation’s (NKF) CEO for Utah and Idaho, spearheaded NKF’s outreach on this important rule.  Reaching out to Idaho’s civic leaders, such as Health and Welfare Committee Chairman Heider and Dean Cameron, the Director of the Department of Insurance, she explained current insurance practices and changes needed to improve the lives of the more than 2,000 ESRD patients in Idaho.

Significant costs can be incurred by Medicare patients that make Medigap coverage necessary. For instance, the inpatient hospital deductible for Medicare under Part A is $1288. Dialysis treatments, which are typically needed at least three times weekly, are covered under Part B at 80%, and the cumulative out-of-pocket expenses can well exceed $7,000 annually. When kidney patients cannot afford the deductibles and co-payments associated with Medicare, it can have a detrimental effect on their health and access to healthcare.

This rule will be approved by the Idaho legislature in 2017.  After this time, policies will become available to those under age 65.

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A Historic Election

The presidential election was historic in many regards, including the first woman as a major party nominee and a nominee with no previous public office or military experience.  The Republican party will now have control of the White House, both Houses of Congress, and the possibility of a conservative Supreme Court.  Click here to see the NY Times’ election maps.

The question before those of us focused on kidney disease is what will President-Elect Trump and the Republican party do with their new political power?  What will the first priorities be?  What does this election mean for healthcare including insurance plans in the Affordable Care Act (also referred to as “Obamacare”), business’ group health plans, Medicaid expansion, drug pricing reform efforts, and value-based care and delivery system reforms that were implemented under President Obama as a method of improving patient outcomes?

We can expect the President-Elect and Republican Congress to make the repeal and replacement of the Affordable Care Act one of their first actions.  They also may pursue funding Medicaid and the Children’s Health Insurance Program (CHIP) under a block grant formula.  For a full list of the President-Elect and Republican leadership’s policy positions read this release by Deloitte.

Typically, significant legislative changes are difficult to attain and we do not know what this portends for healthcare in the U.S.  The Republicans still need to figure out what they want to replace the Affordable Care Act with, if they want to keep components of it, what method of repeal to pursue (via legislation or via Executive Order), and how to deal with opposition by healthcare stakeholders and the Democratic minority.  We will get our first real glances through President-Elect Trump’s selections for cabinet positions and during February when President Trump offers Congress his Fiscal Year 2018 budget plan.

With all the changes expected, now is the time to renew your efforts to educate your elected officials and their staffs at the federal and state level.  Use resources like these fact sheets to educate and inform them of the impact that kidney disease has on patients, families and providers in your congressional district and state.  Sign up to be an advocate with NKF and allow us to work with you to make sure that kidney disease patients are protected when changes begin to come forward. Contact NKF’s advocacy staff at or apply to be part of the Kidney Advocacy Committee (KAC).

The National Kidney Foundation will continue to advocate for kidney disease patients, living donors and their families to ensure that healthcare policy continues to benefit patients and their families. NKF historically has had strong champions in both political parties and we will continue to rely on and expand our support in Congress and the federal health agencies.  Please join us in this effort!


Information and statistics on the election:

Republicans Democrats Independents
U.S. Senate 52 46 2 (Vote with Democrats)
U.S. House 238 193 (4 undecided races)


Expected congressional leadership:

U.S. Senate

Senate Majority Leadership Senate Minority Leadership
Majority Leader: Mitch McConnell (KY)

Majority Whip: John Cornyn (TX)

Minority Leader: Charles Schumer (NY)

Minority Whip: Richard Durbin (IL)

U.S. House of Representatives

House Majority Leadership House Minority Leadership
Speaker: Paul Ryan (WI)

Majority Leader: Kevin McCarthy (CA)

Majority Whip: Steve Scalise (LA)

Minority Leader: Nancy Pelosi (CA)

Minority Whip: Steny Hoyer (MD)

Asst. Democratic Leader: James Clyburn (SC)

Congressional committee leadership related to health care policy:

Committee Republican Chair Democratic Ranking Member
Senate Appropriations Sen. Thad Cochran (MS)  Sen. Pat Leahy (VT)
Senate Finance Sen. Orrin Hatch (UT) Sen. Ron Wyden (OR)
Senate Health, Education, Labor & Pension Sen. Lamar Alexander (TN)  Sen. Patty Murray (WA)
House Appropriations Rep. Rodney Frelinghuysen (NJ) Rep. Nita Lowey (NY)
House Energy & Commerce Either Rep. John Shimkus (IL) or Rep. Greg Walden (OR) Rep. Frank Pallone (NJ)
House Ways & Means Rep. Kevin Brady (TX) Rep. Sander Levin (MI)



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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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