Congratulations Dr. Shari Ling and Derek Forfang!

Congratulations to Dr. Shari Ling and Derek Forfang!  On April 20th, during the National Kidney Foundation’s (NKF) 26th Annual Spring Clinical Meeting, the Foundation bestowed its highest honors to them.

Dr. Shari Ling CMS

Dr. Shari Ling and NKF President, Dr. Michael Choi

Dr. Ling, the Deputy Chief Medical Officer for the Centers for Medicare and Medicaid Services (CMS) and Medical Officer in the Center for Clinical Standards and Quality (CCSQ), received the first-ever NKF Public Service Award.  This award was established to honor those who have dedicated their careers to public service and who have helped to shape public policies or government programs that improve outcomes for kidney patients. Under Dr. Ling’s leadership, CCSQ has established a culture of meaningful engagement of kidney patients and family in policy solutions that advance the delivery of high quality, person-centered care, across all care settings. The engagement of kidney patients by CCSQ has been touted as a model for how patient engagement should occur more broadly.

Mr. Forfang, a kidney patient and long-time kidney disease advocate, received the first-

Derek Forfang Presidents Dinner

Derek Forfang and Daniel Lee

ever Celeste Castillo Lee Patient Engagement Award, established in honor of Celeste Castillo Lee, a longtime advocate for patient-centered care and empowerment. It is the highest honor given by NKF to a distinguished kidney patient who exemplifies NKF’s mission and Celeste’s legacy of putting patients at the center of all aspects of healthcare. Mr. Forfang, of San Pablo, California, has been an end-stage renal disease (ESRD) patient since 1999.  He is a kidney transplant recipient and has been on peritoneal dialysis and hemodialysis.  A regional leader of NKF’s Kidney Advocacy Committee and a member of NKF’s Public Policy Committee, he works tirelessly to protect and improve care for the kidney community. Derek is very active with the National Forum of ESRD Networks, which advocates for the organizations that monitor the quality of chronic kidney disease, dialysis and kidney transplant care in the U.S.  He chairs its Kidney Patient Advisory Council, just one of a handful of his leadership roles there. He also serves on the Kidney Health Initiative’s Patient Committee for the Development of a Roadmap for Innovations in Renal Placement Therapy (RPT) Project.

In another first at the Spring Clinical Meeting, NKF also erected its advocacy wall, showing the faces of the kidney patients that the NKF and our advocates represent.  Inspired, dozens of doctors, nurses, social workers, and other practitioners signed up to become advocates.

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Fighting for Pennsylvania’s Kidney Disease Assistance Program

By Christin Kwasny, Executive Director of NKF Serving Philadelphia/Delaware Valley & Erin L. Tuladzieck, MS, Executive Director of NKF Serving the Alleghenies

During March, the National Kidney Foundation (NKF) was informed about proposed cuts to Pennsylvania’s Chronic Renal Disease Program (CRDP).  The approximate 80% reduction to CRDP’s budget would impact an estimated 7,000 dialysis and kidney transplant patients across the state who rely on this program.

CRDP fills gaps in coverage that otherwise would threaten the health of low-income dialysis and transplant patients. The services provided to those who are eligible include reimbursement for transportation to dialysis, prescription drug coverage – including post-transplant immunosuppressant drug coverage – and medical coverage as a payor of last resort for patients who cannot obtain assistance through Medicaid or other secondary insurance.

Last month, in response to a request from NKF, nearly 300 advocates from across Pennsylvania wrote, Tweeted, or called their state lawmakers and the governor’s office to support restoration of CRDP funding.  On March 28th, NKF’s Philadelphia office organized a meeting with the governor’s Deputy Chief of Staff Eric Hagarty, Deputy Secretary for Policy and Planning Meg Snead, Dr. Joel Glickman from UPENN, social worker Tabitha Semancik, and an NKF representative.  The governor’s representatives listened to the importance of CRDP and were educated about kidney disease and potential consequences of missed dialysis or missed medication.

NKF will continue to educate the governor’s staff, the state legislature, and activate kidney disease advocates to continue to pressure the Pennsylvania government to protect funding for this vital kidney disease assistance program.  If you live in Pennsylvania and have not already written to support this important program of last resort for kidney patients, please take a moment to send them a message of support.

Curious about the Pennsylvania’s Chronic Renal Disease Program (CRDP)?  See this fact sheet.

Write your State Lawmakers

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World Kidney Day Bring Kidney Disease Home to All of America

CKD - Robin Kelly 3.8.17

A World Kidney Day Congressional Record Entry

On March 9th, America celebrated World Kidney Day.  This awareness raising event resulted in a day of attention on kidney disease across major cities and in all 50 states.

Multiple state legislatures and city governments

Donate Life KS House

Kansas Advocates on the State Capitol’s Floor

issued proclamations about the importance of chronic kidney disease education and CKD’s impact on the 26 million Americans who have it.   Some legislatures recognized NKF advocates for their extraordinary work.  Others brought kidney disease patients onto their floor to celebrate World Kidney Day.  In fact, several states – including Texas, Kansas, and South Carolina – hosted advocacy days in their state capitols to further emphasize the impact of CKD to their legislators and staff.

Light Pylons at LAX

LAX Pylons

Buildings, bridges, airports, ferris wheels, and natural landmarks turned orange, the national color recognizing kidney health, and hung

Sioux Falls

Sioux Falls

banners in recognition of World Kidney Day.  In Seattle, the Columbia Tower, the Great Wheel, and the Seattle Westin shined in bright orange.  In Los Angeles, LAX Airport turned its pylons orange.  In Boston, the Zakim Bridge went orange and banners were hung from the Corey Tower in Atlanta.  Even the Empire State Building was shining bright all night.

In addition, many activities promoting kidney health occurred across the country.  In

Dallas Screening

Dallas Health Screening

Dallas, NKF worked with the Dallas Health and Human Services Department to host a free clinic that screened over 250 people, as part of NKF’s KEEP Healthy Screening initiative.

In Columbia, SC, NKF held a screening at the state capitol building and helped educate around 400 people.


Ribbon Cutting Ceremony in Chicago

In Chicago, Illinois Secretary of State, Jesse White, cut the ribbon on NKF’s new “Kidney Mobile” during World Kidney Day.  Following the ribbon cutting ceremony, the RV served as a mobile clinic for health screenings.

CKD also made the news as many of these events were covered and kidney advocates were interviewed.  One such interview took place in Virginia when NBC12’s Heather Sullivan interviewed the daughter of a KAC liaison, Hannah Shelton.  Hannah is a 17-year-old who suffered from Wilms tumor and received a lifesaving transplant from her father.  In Dallas, NKF Regional Programs Director Mark Edwards was interviewed on CBS to help educate Texans about CKD and CKD testing.  Similarly, Perry Hall was interviewed by Cincinnati’s WKRC news to educate Ohioans.

Leading up to World Kidney Day, on March 6th and 7th, more than 125 advocates and 6

2017 Summit

Summit Participants

kidney organizations, hosted by NKF, met with their Senators and Representatives to educate them on CKD and the priority policy issues that will improve the lives of kidney patients.  Advocates from around the country also joined the event virtually through NKF’s Patient Summit website by sending more than 1,500 tweets, videos of themselves, and emails to Members of Congress.  NKF also used the opportunity to launch its new hashtag for kidney disease advocacy, #mykidneysmylife.  Several members of Congress also took the opportunity to show solidarity with kidney patients by wearing the NKF’s #mykidneysmylife sticker on World Kidney Day. Congresswoman Kelly (D-IL) even recognized an NKF advocate and the need to address kidney disease earlier by entering a statement in the Congressional Record.

NKF also hosted a press conference on living donation that was attended by approximately 150 people, including three Congressional speakers, Rep. Nadler (D-NY), Rep. Herrera Beutler (R-WA) and her family, and Rep. Guthrie (R-KY).

Press Conference

What did you do on World Kidney Day?  Share it with us by commenting below!

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NKF kickoffs Kidney Innovation Summit hosted by the U.S. Department of Veterans Affairs

By Michael J. Choi, MD, FNKF – NKF President, Clinical Director of Nephrology, Johns Hopkins School of Medicine

The best way to predict the future is to create it. – Abraham Lincoln.

With more than 26 million adults in the United States impacted by kidney disease and over 675,000 people with irreversible kidney failure, or end-stage renal disease (ESRD), who require dialysis or a kidney transplant to survive, the need for innovation that improves diagnosis, management, and treatment is imperative.

Innovation in kidney disease requires the creation of new technologies, software

Kidney Innovation Summit

Kidney Innovation Summit – Washington, DC February 9-10, 2017

platforms, care delivery and coordination processes as well as improved education for patients, caregivers, and health providers. Innovation should aim to solve the most challenging problems of today and the future to improve the lives of those impacted by the disease.

NKF is the historic pioneer of scientific research and innovation focusing on the whole person through the lens of kidney health. We have a history of effective action against kidney disease by improving clinical knowledge as well as providing people-centered programs, resources, and support for over 65 years.

On February 9th, I was honored to represent NKF at the Kidney Innovation Summit in Washington, DC, hosted by the U.S. Department of Veterans Affairs (VA) and the VA Center for Innovation, and the American Society of Nephrology.

The two day Innovation Summit brought together approximately 150 attendees from patient advocacy groups, federal government agencies including the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), Health Resources and Service Administration (HRSA), and Centers For Medicare and Medicaid Services (CMS), industry, non-profits, and nephrology experts and researchers from outstanding academic institutions.

The Summit’s goal was to advance innovation in delivering care to people with kidney disease by sharing knowledge and sparking collaborations that will convert new ideas into impact for kidney disease patients and providers.

My presentation of TACKLEing Kidney Disease Up Front: A Trial of Early Chronic

Photo Feb 09, 9 48 01 AM 2

The Innovation Wish List leading into the chronic kidney disease lightening talk led by Dr. Michael Choi – NKF President at the Kidney Innovation Summit

KidneyDisease (CKD) Detection, described the TACKLE Trial, one of NKFs major research initiatives. This will be a large multi-site randomized control trial that will measure the importance of early detection (screen, educate, and treat approach in primary care) among those at risk for CKD and for those identified with the disease compare the effects of education strategies with co-management using a team approach to care. Early diagnosis was a top item of the Summit’s Innovation Wish List.

Moreover, the Summit also featured sessions on kidney replacement therapy and issues in transplantation, including improving the organ discard rate and living donation. NKF is also addressing these issues. In May 2017, we will convene a Consensus Conference to Decrease Kidney Discards to explore approaches to reduce the number of kidneys that are discarded in the U.S. each year. NKF also recently launched The Big Ask, The Big Give, a multi-media public awareness campaign which assists and supports living kidney donation for both kidney patients who have difficulty asking someone to consider a kidney donation (The Big Ask) and potential donors who may not understand this life changing process (The Big Give).

As I further reflect on the Summit, it was inspiring and motivating to hear of so many

Choi and ASN President

Michael Choi, MD, FNKF – President of the National Kidney Foundation (left) and Eleanor D. Lederer, MD, FASN, President of the American Society of Nephrology (right) at the Kidney Innovation Summit

projects and ideas that could transform the journey from risk of disease to treatment of it and improve the lives of kidney patients. The most profound discussions and comments were the perspectives from patients, which anchored the beginning and end of each session. Patient advocates in attendance shared their kidney stories and hopes for improving the lives of others impacted by the disease.

NKF’s network of patients, family members, and healthcare professionals are our best collaborators to spark innovation. Thank you for inspiring us, through your personal stories, to work harder together and go further to bring about changes in government policies, programs, education, and research that will improve the lives of kidney patients.

Your continued support and engagement is critical to helping us achieve our goals. Together, we will make kidney disease a public health priority through education, research, innovation and advocacy for all kidney patients.

Citation: United States Renal Data System. 2016 USRDS annual data report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2016.

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United with Purpose

press conf senator HEA08834This year’s Kidney Patient Summit was the biggest and best yet. With nearly 150 advocates from six organizations taking Capitol Hill by storm, they met with 31 lawmakers and 148 health policy staff to push three priorities: early detection for CKD, living organ donation, and more funding to battle kidney disease.

group stair HEA08366.jpgSpecifically, advocates urged Members to support a pilot program which seeks to improve early detection, care and outcomes for people with chronic kidney disease (CKD); co-sponsor the newly introduced H.R. 1270, the Living Donor Protection Act (LDPA), which would prohibit discrimination in life, disability or long-term care insurance for living organ donors and protect jobs by adding living donation to the Family Medical Leave Act; and support funding for CKD programs run by the Centers for Disease Control and Prevention, National Institute of Diabetes and Digestive and Kidney Diseases, and Health Resources and Services Administration.

From last Monday’s workshops and meals to Tuesday’s departure to the Hill meetings, the camaraderie was evident among the group sharing smiles, photos, and a love for their orange scarves. Tuesday’s press conference, which featured NKF’s CEO Kevin Longino, Representative Jerrold Nadler (D-NY), Representative Jaime Herrera Beutler (R-WA), Representative Brett Guthrie (R-KY), kidney patients and living donors, spoke of the urgent need to increase living organ donation and protect living donors. The speakers stood united with heartfelt stories of how they, and their loved ones, have been affected by kidney disease and kidney problems in childhood.

At the core of the Summit was the need attack CKD frgroup HEA09060noDom both sides – passage of the LDPA and legislation to create a demonstration program to promote early detection of CKD. The thought of donating a kidney to someone in need to save a life, only to lose your job because you needed time to recover from surgery, was a key rallying cry amongst the advocates. KAC has brought the LDPA and the need for funding early detection to the attention of Congress, but now we need YOUR voice to protect living donors. Help us with our advocacy efforts during National Kidney Month:

1. Join us by urging your members of Congress to support the LDPA:

2. Take to social media and message your members of Congress’s account. You can find these accounts at

3. Follow NKF on Facebook, Twitter, and Instagram, use the hashtag #MyKidneysMyLife and repost our messages.

Thank you for your support! Together, we can help Congress pass The Living Donor Protection Act—the 100,000 Americans waiting on a kidney transplant right now are counting on us.

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KAC Converges on Capitol Hill

Nearly 150 advocates fromScreen Shot 2017-03-07 at 9.39.42 PM six kidney organizations converged on Capitol Hill on Tuesday to meet with lawmakers as part of the 4th Annual Kidney Patient Summit organized and led by the National Kidney Foundation (NKF). Advocates urged Congress to support legislation to create a pilot program to improve early detection, care and outcomes for people with chronic kidney disease, support H.R. 1270, The Living Donor Protection Act 2017, which will prohibit discrimination in life, disability or long-term care insurance and add living donation to the Family and Medical Leave Act.

In the middle of these meetings, a press conference was held to address the importance of this legislation. Press conference speakers included: Kevin Longino, CEO, NKF; Representative Jerrold Nadler (D-NY); Representative Jaime Herrera Beutler (R-WA); Representative Brett Guthrie, (R-KY); Kent Bressler, kidney recipient, Kerrville, TX; Kelly Cline, mother of kidney recipient Hannah Shelton, Glen Allen, VA; Alex Fox, kidney donor, Star, ID; Ewo, Harrell, kidney recipient, Providence, RI; Christopher Melz, kidney donor, Huntington Station, NY; Luis and Noelia Rodriguez, kidney recipient and donor, Sioux Falls, SD; and Matthew Scroggy, kidney recipient, Columbus, OH.

Screen Shot 2017-03-07 at 9.58.15 PMKevin Longino, CEO, National Kidney Foundation, stressed the need to remove barriers to living donation to help solve the long wait list time for patients to receive a deceased donor organ. “Twelve kidney patients die every day waiting. Increasing living organ donation could help solve the wait list problem,” he said. Representative Nadler, a long-time champion for kidney patients, spoke of his staff person whose child needed a kidney transplant and The Living Donor Protection Act, which he introduced last week to help protect living donors and increase donation. In her heartfelt remarks, Representative Herrera Beutler, who co-sponsored the legislation, spoke of her daughter, Abigail, who was born without any kidneys and is the first child known to have survived Potter Syndrome. Abigail received a kidney from her dad, Dan Beutler.

Representative Guthrie spoke of his then eight-year-old son, who became ill and they found out he was born with one functioning kidney and one that was malformed. Another pair of mother-daughter speakers were Kelly Cline and her daughter Hannah Shelton, who shared the fear Hannah’s dad felt after becoming her living donor—not of the surgery or recovery but fear of losing his job. Said Cline, “He’d just given the gift of life to another human being but because there are no federal job protections for living donors under the Family and Medical Leave Act, he returned to work too soon and put his own health at risk.” Alex Fox, who has no connection to kidney disease, shared how he was inspired to donate a kidney through a compelling Facebook post, “I saw the request, along with pictures of Darienne, a child who has special needs just like my son, and it struck a chord. Helping a complete stranger is pretty awesome.”

Kent Bressler tearfully expressed his gratitude for his brother’s kidney donation to him 30 years ago, saying, “His gift allowed my girls to grow up with their dad; my wife to grow old with her husband; my grandchildren the chance to know me.” Ewo Harrell, a young and vibrant graduate student at Brown University who received a transplant from her sister said, “I had never heard of kidney failure or kidney disease, and I did not know that as an African American I was at increased risk for developing the disease.” Christopher Melz, who donated his kidney to a childhood friend, noted that you don’t have to be the same race or gender to donate a kidney, but your blood and tissue types do need to match. Though some call living donors heroes, Melz insisted that the term does not apply to him, “I’m just a guy who cares about his friends and family and needed to do what was right.”KAC&Chuck

Luis and Noelia Rodriguez, husband and wife, shared how Luis was diagnosed with stage 5 kidney disease unexpectedly. “I had no idea I had kidney disease. I was out for a walk with my daughter and nearly collapsed,” said Luis. “I went to the ER for lab tests and by the time I drove back home, I was told to get to the hospital immediately.” Matthew Scroggy, a young pharmacist, also spoke of how shocking it was to be diagnosed, “I was a healthy 22-year-old in my first year of pharmacy school, I had no history of kidney disease and took no medications. After diagnosis, it was pretty much the same except I now needed a transplant and took 29 pills a day.”

To read more remarks from the speakers, please visit

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A Big Day, a Big Plan

Day one of the Kidney Patient Summit began with a Facebook Live event featuring Kidney Advocacy Committee (KAC) member Ewo Harrell talking with NKF Senior Director of Health Policy Tonya Saffer. The video was viewed over 4,000 times on its first day. This was followed by KAC breaking off into grDSC00513oups to strategize and role-play for tomorrow’s meetings with members of Congress. The message was clear: donors are heroes that deserve to be protected, and the Living Donor Protection Act is a bill that requires no funding and should receive bipartisan support.

In the afternoon, Kent Bressler, of Kerrville, Texas, received the NKF’s Richard K. Salick Advocacy Award. The award is named after Rich Salick, a former pro surfer who underwent three kidney transplants and was a tireless advocate for kidney patients. It is the highest honor NKF bestows on advocacy volunteers.

Kent has been advocating for three years in Washington, DC, with his wife of 47 years, Catherine. He was diagnosed in 1982 with focal segmental glomerulosclerosis (FSGS), a disease that describes scarring in the kidney. This can lead to additional health problems including, but not limited to, large amounts of protein in the urine, loss of protein in the blood, high cholesterol, and high blood pressure. In 1987, Kent received a kidney from his brother Kip, a living donor who is also in attendance at the Summit. Still, for the past 28 years, he has been on immunosuppressive drugs that can have harmful, long-term side effects that he says he is beginning to experience. A registered nurse, Kent has represented NKF nationally, having participated in chronic kidney disease research reviews for the U.S. Department of Defense; and worked in Texas with NKF as a mentor for potential transplant recipients and donors. He is active in his church and has two daughters and four grandchildren.

The evening was capped off by representatives from the Alport Syndrome Foundation, Polycystic Kidney Disease Foundation, NephCure Kidney International, Home Dialyzors United and American Association of Kidney Patients sharing their organization’s efforts to improve the lives of kidney patients everywhere.

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The 4th Annual Kidney Patient Summit

hea04888Nearly 150 advocates from six kidney organizations will converge on Capitol Hill, March 6-7, to meet personally with lawmakers and put a human face on kidney disease during the 4th Annual Kidney Patient Summit, organized and led by the National Kidney Foundation (NKF). This largest event to date brings together, in a unified voice, NKF’s Kidney Advocacy Committee members and advocates from Alport Syndrome Foundation, Polycystic Kidney Disease Foundation, NephCure Kidney International, Home Dialyzors United and American Association of Kidney Patients. 

The attendees will share their stories and urge Members of Congress to co-sponsor the Living Donor Protection Act, which would prohibit discrimination in life, disability or long-term care insurance for living organ donors and protect jobs by adding living donation to the Family Medical Leave Act; support a pilot program which seeks to improve early detection, care and outcomes for people with chronic kidney disease (CKD); and support funding for CKD programs run by the Centers for Disease Control and Prevention, National Institute of Diabetes and Digestive and Kidney Diseases, and Health Resources and Services Administration.

At the Summit, individuals who have kidney disease, dialysis patients, living donors, family members and caregivers will be united by the affirmation and hashtag #MyKidneysMyLife to underscore the direct relationship between having at least one healthy kidney and living at all.

In addition to advocates’ visits with lawmakers on Tuesday, March 7, this year a special Summit press conference focused on living donation will be held the same day from at 1 p.m. EST, on Capitol Hill. Living organ donors and kidney recipients will share their stories, demonstrate the urgent need to increase living donation, and provide hope to more than 100,000 Americans waiting for a kidney transplant.

To learn more or support kidney disease patients, please visit:

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The Trump Administration Will Know that CKD is a Public Health Priority

By Tonya L. Saffer, MPH

Fueled by passion and urgency your government relations team is dedicated to ensuring that the Trump Administration recognizes chronic kidney disease as a public health priority. Along with NKF’s Executive Leadership, we will be working to engage leaders throughout the U.S. Department of Health and Human Services (HHS) and the agencies it overseas to include the Center for Medicare & Medicaid Services (CMS), the Center for Disease Control and Prevention (CDC), and the National Institutes for Health (NIH) on opportunities to improve earlier detection and care of CKD patients and access to transplantation for patients who progress to kidney failure.

In addition, to being an advocate for kidney patients, I am also a public health advocate and the two are clearly intertwined. In fact, it was my experience working with kidney patients and advocating on their behalf that fueled my decision to become a student of public health. Public health is really about protecting the health of populations.  “[It] is the science of protecting and improving the health of families and communities through promotion of healthy lifestyles, research for disease and injury prevention and detection and control of infectious diseases.”[1] We have seen many examples of advocacy successes in public health in the areas of diabetes prevention and care, and heart disease prevention and care. For example, the Federal government has invested substantial resources into developing and testing the Diabetes Prevention Program; that program was so successful that it is now included as a covered Medicare benefit.  The government is also piloting the Million Hearts: Cardiovascular Risk Reduction Model, which creates payment incentives for health care practitioners to focus on identifying people at risk for heart conditions and helping those individuals reduce that risk.  This is in addition to substantial Federal funds that have been dedicated to diabetes and heart disease prevention, treatment, and research programs.  However, despite the large overlap between diabetes, heart disease and chronic kidney disease – little attention has been focused on prevention, earlier care of CKD patients, or kidney disease research.  It is beyond time to change that.

medic-563425_1920This year we are doubling down on our efforts to meet with leadership in the Federal agencies that I mentioned above, and ask that an emphasis on early CKD detection and treatment be included in this year’s HHS strategic planning and healthcare quality improvement goals.  We will continue to develop and advocate for an innovative kidney care model that creates incentives for primary care practitioners to detect CKD earlier, in people at risk,  and to focus on treatment efforts delaying progression of CKD, improving health outcomes and collaborating with nephrologists on the care of patients who progress to advanced CKD.  This model will demonstrate that earlier detection and care can improve patient outcomes, allow patients whose disease progresses opportunities to make informed decisions about their treatment options before kidney failure and all the while lower health care costs.  We will ask for dedicated public health funding for CKD prevention, early treatment, and research efforts. We will urge the Administration to continue and further the commitment of the last Administration to develop initiatives and policies that increase access to organ donation.  We will also collaborate with our public health colleagues in the agencies to create practical solutions to integrating chronic kidney disease detection and care into initiatives and policies which promote diabetes and hypertension control.

In addition, we will continue to advocate relentlessly for kidney patients to maintain choice in health insurance options and to receive comprehensive education on all of those options.  With so many changes being proposed for health insurance it is critical that protections for kidney patients are strengthened.

Your support and engagement will be critical to our efforts.  There will be roles for our network of patients, family members, and healthcare professionals to help us achieve our goals and we will certainly keep you aware of them and invite you to work with us.

Thank you for the inspiration you all give me through your personal stories, to work harder and go further to bring about changes in government policies and programs that improve the lives of kidney patients.


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The Affordable Care Act’s future and the impact on people with kidney disease

By Troy Zimmerman, National Kidney Foundation’s Vice President of Government Relations

advocates-outside-capitolThe Affordable Care Act (ACA), also known as Obama Care, passed in 2010 and was intended to allow more Americans to access affordable and comprehensive health insurance coverage.  This law has been under great scrutiny and Republicans have wanted to repeal (cancel) it from day one.  Now that the Republican party controls the Presidency in addition to the U.S. House of Representatives and the U.S. Senate, it is highly likely the ACA will be repealed, but replacing it will not be an easy feat.

Many of you have asked what will become of the ACA and how changes will impact people with kidney disease.  While I can’t offer many predictions on what’s to come, I can help to answer the questions on what has happened to date and what it means.  I’ve also thrown in a few forecasting thoughts, but please don’t hold me to them as we are quickly learning to expect the unexpected this year.

We know that many people with kidney disease, prior to the ACA, had challenges getting health coverage because they had a pre-existing condition and could be denied insurance.  People with kidney disease also incurred a waiting period before getting coverage, or were faced with unaffordable monthly premiums.  We also know that people with kidney disease were more likely to reach the annual and life-time caps that were allowed prior to the ACA – this means some people would reach periods where their health insurance wouldn’t pay for their healthcare costs even though they continued to pay premiums. For most kidney patients who progress to kidney failure the Medicare End-stage Renal Disease (ESRD) program allows them to enroll in Medicare coverage regardless of age for as long they remain on dialysis.  Medicare will pay for a kidney transplant too, but after 36 months, Medicare coverage for those under age 65 ends unless the person has Medicare due to a disability other than kidney failure.

The National Kidney Foundation has always advocated for kidney patients to have access to health insurance and for the elimination of life-time and annual caps on coverage.  We believe kidney patients should not be discriminated against because of their health status.  We are concerned that if the policies which protect patients against insurers charging higher premiums and protect against insurers delaying coverage due to pre-existing conditions are repealed, it could set us back in our goal to improve earlier detection and treatment of kidney disease.  Testing and identifying the disease could prevent patients from obtaining health insurance.

The ACA has not been a perfect solution. Many kidney patients continue to face high out-of-pocket costs for services and medications, including for immunosuppressive drugs post transplant.  As a result, NKF has also advocated for reforms to the ACA which would make healthcare services more affordable.

To date Congress and the President have set the stage for repeal efforts and a dismantling of certain provisions of the ACA, but nothing has yet been repealed.  What has occurred in Congress is a budget resolution vote which essentially was an agreement to use a process known as Budget Reconciliation to repeal parts of the Affordable Care Act that deal with money and taxes.  The vote on Budget Reconciliation only requires 51 Senators to vote in favor. In contrast, if a stand-alone bill to repeal was introduced it would take 60 votes to overcome a likely filibuster and vote on a bill, a much more challenging threshold to reach.

Under Budget Reconciliation, Congress can’t repeal the pre-existing condition protections or the lifetime and annual limits on coverage.  However, it can repeal the tax penalties for those who don’t get health insurance (the individual mandate) and the subsidies and tax credits to help people afford insurance.  It can also take away increased funding to the states for Medicaid expansion. Any of these moves can decrease access to health insurance – including for those with chronic conditions.  For example, if states lose Medicaid funding they could restrict who they will cover under Medicaid and these decisions will vary from state to state. If the individual mandate is repealed, insurers may exit the individual insurance market or substantially raise premiums for everyone because it is widely believed that young, healthy adults will drop coverage, leaving only those with costly health conditions covered.  This creates unacceptable risk for the insurers and higher costs for consumers.

On Friday, January 20th, shortly after being sworn in, President Trump issued an Executive Order that appears to take aim at repealing the individual mandate as well as other parts of the ACA, but the Executive Order still requires the U.S. Department of Health and Human Services (HHS) to follow existing law.  This means the incoming Secretary of HHS will still need to issue proposed regulations, likely with a public comment period, and will still be restricted to upholding the requirements under the ACA.

Republicans have indicated a desire to repeal the individual mandate and to limit funding for Medicaid expansion, but it’s unlikely that these would go into effect before next year – even if they vote in the next week or two.  This may allow Congress time to come up with an ACA replacement bill.  Some Republicans have also indicated a desire to keep coverage for those Americans who have it today and to keep protections for pre-existing conditions.  The President has publicly stated his desire to increase access to insurance and even more boldly stated a desire to have coverage for all Americans. However, no replacement plans have been agreed to yet.

In a nutshell, nothing regarding the ACA has changed to date.  But, the stage has been set and action to repeal certain parts of the ACA through Budget Reconciliation could happen this week or next.  However, an ACA replacement bill could take much longer to develop and pass (also requires 60 votes). This could potentially put the coverage of millions of Americans in limbo until then.  Because of this, I urge you to take action to make sure millions of people keep their access to health insurance – including those with or at risk for chronic kidney disease.  Email your Members of Congress and ask them not to vote on repealing the ACA until a replacement plan is finalized.

Do you have health insurance because of the ACA?  Share your story with us in the comments below or email us at


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