Friends of NIDDK, Congressional Diabetes Caucus, and NKF Highlight the Value of Scientific Research for Chronic Disease Patients

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David White (NKF)

By David White, National Kidney Foundation (NKF) Kidney Advocacy Committee member 

On May 18, I joined representatives of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), patient groups, and other stakeholders in briefing the House of Representatives’ Appropriations Committee staff on the importance of NIDDK’s research and educational programs.  Other panelists included Dr. Griffin Rodgers, Director of NIDDK and Dr. William Cefalu, Chief Scientific, Medical and Mission Officer of the American Diabetes Association (ADA).

NIDDK conducts, supports, and coordinates research on many of the most serious diseases affecting public health at each step of both disease progression and treatment.  The hour-long panel discussion highlighted innovative research developments at NIDDK.  We discussed the importance of funding NIDDK’s research for patients with chronic diseases and the impact it will have on patients with diabetes and chronic kidney disease (CKD).  NIDDK has laid the groundwork for advances in personalized medicine and treatments, new medications, organ-related stem cell research, and artificial organs.  It has also taken a leading role in outreach to minority communities in an effort to reduce racial disparities, educate these communities about research, and involve community members in research and medical trials.

My kidneys failed in 2009, and when I saw how advocating for my own health changed my life I decided to do the same for as many people as possible. My advocacy led me to opportunities to participate in numerous panel discussions and trials, and I’ve seen the impact that both can have on our treatments and quality of life.  I’m alive today thanks to research, and I do my best to return the favor by becoming more involved in clinical research and making it easier for more people like me to get involved.

When I speak with friends and relatives about participating in clinical trials, however, many reject the idea immediately for various and sometimes unspoken reasons. Barriers to participation in research by minorities – such as fear and mistrust – must be addressed, and to be addressed they have to be acknowledged. We need to be more innovative in our attempts to contact the hard-to-reach. More funding directed to NIDDK and NIH would create more opportunities to address this culture gap.

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Left to Right: Dr. William Cefalu (ADA), David White (NKF), Dr. Griffin Rodgers (NIDDK)

Increased funding also is needed so that more researchers can investigate ways to stop the onset and progression of kidney disease, and provide solutions to reduce this cost burden to our healthcare system.  Additionally, more funding should be directed to engage more people from every walk of life in enhanced and targeted research that will deliver improved detection and treatments to patients. Smart investment now will result in more jobs in the healthcare sector, a better quality of life for millions, and a healthier population.

About David White

Residing in Hillcrest Heights, MD, David is a veteran of in-center nocturnal and peritoneal dialysis and received a kidney transplant in 2015. He is pursuing a degree in health systems management at the University of Maryland and has studied at Yale University. He is a member of NKF’s Kidney Advocacy Committee and recently spoke to the organization’s Council of Advanced Practitioners at the NKF 2017 Spring Clinical Meetings.  He also serves in many other capacities, including PCORI’s Advisory Panel on Patient Engagement, the Veterans Transplantation Association Board of Directors, and as interim chair of the Kidney Health Initiative’s Patient and Family Partnership Council.  David enjoys presenting about kidney disease awareness and patient engagement and has made regional and national television appearances as an advocate.

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NKF’s Hosts Patient-Driven Research Stakeholders’ Conference at 2017 Spring Clinical Meeting – A Conference Where #PatientsDecide

On April 22, 2017 in Orlando Florida, the National Kidney Foundation (NKF) hosted the first effort to identify patient-led kidney disease national research priorities by bringing together over 100 individuals representing  kidney patients of all stages, dialysis patients, kidney transplant recipients, living kidney donors and potential living donors, and kidney donor families as well as physicians, social workers, nurses, technicians, pharmacists, dietitians, caregivers, stakeholders, and academics. The Stakeholders’ Conference was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.  The ideas and solutions developed during this conference will help NFK further define its role as an organization in facilitating patient involvement in chronic kidney disease (CKD) research.

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Conference’s co-chairs (Derek Forfang and Teri Browne, PhD, MSW, NSW-C), an example of how patients and researchers can collaborate, as a team

The conference truly embodied how patients and researchers can work collaboratively to address questions most important to kidney patients. Over the course of a year, patients and stakeholders have been true partners throughout all phases of this conference project; from planning, shaping the agenda, and leading the conference activities. Patients, caregivers, researchers, and stakeholders shaped the agenda through their responses to a survey assessing their experiences and challenges in patient-centered research. The conference was also facilitated by both a patient from NKF’s Kidney Patient Advocacy Committee (Derek Forfang) and researcher (Teri Browne, PhD, MSW, NSW-C) and featured patient, caregiver, and researcher panel discussions and a breakout working group session.

In the coming months, NKF, using results from the conference, will establish a list of recommendations on ways that patients, their families, and caregivers can be active participants in kidney disease research processes; and identify a research topic that will be supported by NKF’s 2018 Research Grant Program.

See below for pictures and Twitter engagement from the day

Panelists

The National Kidney Foundation thanks you for serving as panelists for the 2017 Stakeholders’ Conference
Patient Panelists: Valerie Bailey, Kevin Fowler, Katina Lang-Lindsey, PhD, LMSW, Bobbi Wager, and Caroline Wilkie
Research Panelists: Michael Germain, MD (not pictured), Jamie Green, MD, Rachel Patzer, PhD, MPH, Wendy St. Peter, PharmD, and Mark Unruh, MD

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Rachel Patzer and Cynthia Allison

Rachel Patzer, PhD (right) with her research partner and kidney patient advocate, Cynthia Allison (left)

R Patzer Tweet

 

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Conference attendees (patients, researchers, and other stakeholders) worked collaboratively in small breakout groups to identify best practice strategies for actively engaging patients in kidney disease research

The Stakeholders’ Conference was funded through a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award Initiative (EAIN 3456-NKF). For more information visit www.pcori.org
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Legislative Update: House Passes Healthcare Legislation Impacting Pre-Existing Condition Protections

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On Thursday, May 4th, the House of Representatives voted, 217-213, to pass the American Health Care Act (AHCA) (H.R. 1628).  The National Kidney Foundation (NKF) remains concerned about the impact this bill could have on healthcare for those with chronic conditions, including the 26 million kidney disease patients in the U.S.

H.R. 1628 will now go to the Senate for consideration.  Senate discussion could start within weeks but a Senate vote is likely months away.  We will keep you updated on the Senate’s consideration and provide recommendations for action at that time.  We hope that you will join NKF in helping to shape their healthcare proposals and protecting patients with chronic conditions from having their healthcare negatively impacted.

For more information, please see our press statement released prior to the House vote.

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Bi-Partisan Agreement Funds Federal Agency Healthcare Programs

static_advocacyOn Sunday, April 30th, the House and Senate leadership reached a bi-partisan agreement to fund federal agencies and programs through the end of September.   We are pleased to announce that kidney disease priorities being supported by the National Kidney Foundation increased or maintained their funding in relation to Fiscal Year 2016.

The CDC’s Chronic Kidney Disease Program, which addresses the social and economic impact of kidney disease, will maintain level funding at $2.1 million.  The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), an agency within the National Institutes of Health (NIH) investigating ways to stop kidney disease and improve treatments, will be funded at $1.87 billion – an increase of $52 million over FY2016.  The Health Resources and Services Administration’s Division of Transplantation (HRSA-DoT), responsible for implementation of national policies and oversight governing the distribution of organs to those awaiting an organ transplant, will maintain funding at $23.55 million.

National Kidney Foundation sincerely appreciates the Congressional Appropriations leadership and the House and Senate Majority and Minority leadership for their efforts to advance and protect the needs of people with kidney disease.

Both houses of Congress will be voting on this funding agreement by Friday, May 5th.

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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.

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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

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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

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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.

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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.

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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

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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: http://advocacy.kidney.org/action-view/?sl=living-donor-protection-act

2. Take to social media and message your members of Congress’s account. You can find these accounts at http://advocacy.kidney.org/2017-summit-social-media-toolkit/

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 https://www.kidney.org/news/2017-kidney-patient-summit-speaker-remarks.

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