NKF submits testimony on Department of Health and Human Services funding

The National Kidney Foundation continues to show its leadership role in the fight against Chronic Kidney Disease (CKD) and its priorities in promoting detection, management, and transplantation programs.  In testimony submitted to the House and Senate Appropriations Committees, NKF discussed a number of initiatives along with three requests of Congressional appropriators.

Among the initiatives mentioned was NKF’s “CKD Intercept program.”  Funded by NKF, CKD Intercept is designed to help improve early detection and diagnosis of CKD by primary care practitioners.   The testimony also discusses NKF’s legislative efforts to remove the reimbursement barriers to earlier, better CKD care management by directing the Secretary of Health and Human Services to create a Medicare bundled payment demonstration for CKD management to primary care practitioners and nephrologists.

However, the primary focus of the testimony was NKF’s appropriations priorities. NKF is promoting the passage of Health and Human Services Appropriations bills that would increase funding for three programs focusing on kidney disease detection, management, and transplantation.

NKF urged the Appropriations Committees to provide $2.31 million for the CDC’s CKD program for FY 2017.  This first of its kind program consists of three projects to promote kidney health by identifying and controlling risk factors, raising awareness, and promoting early diagnosis and improved outcomes and quality of life for those living with CKD.

NKF supports the Friends of NIDDK request of $2.16 billion for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in FY 2017.  Many research proposals with the potential to lead to improved treatments, including reconstructing the kidney to restore function, remain unfunded.  Patients deserve better and we cannot allow these opportunities to slip away when the institute could fund this life saving research.

Finally, NKF urged the Appropriations Committees to provide $28.5 million for organ donation and transplantation programs in the HRSA Division of Transplantation (DoT).  Activities supported by DoT include initiatives to increase the number of donor organs, and the National Donor Assistance Program which helps individuals obtain a transplant by assisting living organ donors with expenses such as travel and subsistence that are not reimbursed by insurance, a health benefit program, or any other state or federal program.

You can read the full testimony submitted by NKF here (House / Senate).

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FDA Commissioner Speaks to Health Community

By Troy Zimmerman, Vice President of the National Kidney Foundation

Most Americans are familiar with the Food and Drug Administration (FDA) and its role in protecting our health, but did you know FDA regulates more than 20 cents of every consumer dollar we spend?  In addition to regulating food and prescription drugs, FDA oversees medical devices, dietary supplements, cosmetics, pet foods and many other products whose safe use we take for granted every day.

The National Kidney Foundation (NKF) is a member of the 180 member Alliance for a Stronger FDA, whose sole focus is securing annual funding (“appropriations”) by Congress for FDA activities.  On April 19, FDA Commissioner Dr. Robert Califf met with the Alliance to discuss challenges and priorities for the agency.  I represent NKF as Vice President of the Alliance’s Board of Directors, and had the honor of introducing the Commissioner.

Dr. Califf’s comments focused on the knowledge revolution that is occurring and opportunities for improved patient care.  This includes precision therapies for patient subgroups, organ replacement, wearable technologies, and computation and analysis of data.  He emphasized the need for partnerships with patients, like you, as new therapies are proposed, tested, and analyzed.

With continued efforts by the FDA Alliance to develop and expand strong bipartisan support in Congress, we are optimistic that the agency will receive the necessary resources to support further potential scientific breakthroughs for patients.

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Off to a Great Start

The Living Donor Protection Act (H.R. 4616/S.2584) is gaining momentum. On April 12th, 11 Representatives became co-sponsors of the bill.  This legislation was introduced by Representative Jerrold Nadler (D-NY) and Representative Michael Burgess, MD (R-TX) in the House of Representatives, and Senator Mark Kirk (R-IL) and Senator Kirsten Gillibrand (D-NY) in the Senate.

The bill will remove barriers to living donation by prohibiting insurance companies from denying or limiting life, disability, and long term care insurance to living donors, as well as from charging higher premiums. The bill also clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from donation.

The wait list for a kidney transplant is long and many individuals will die before ever receiving a kidney transplant. There are currently 100,269people waiting for a kidney transplant.  Living donors— individuals in good health who donate a kidney to someone—make a substantial contribution to increasing the number of transplants performed each year.  In 2015, 17,878 kidney transplants were performed, 5,628 of which were made possible by living donors.

Please thank all of the sponsors of this important legislation by writing them, tweeting, or posting on their Facebook pages. Contact information for your elected officials can be located here: House/Senate.

Sample tweets you can use:

.@MoC/Senator Thank you for sponsoring the #LivingDonorProtectionAct & helping save lives – [Your first name, Your city]

Or

.@MoC/Senator Thank you for sponsoring the #LivingDonorProtectionAct & helping save lives of kidney disease patients– [Your first name, Your city]

New Co-Sponsors
Rep. Sanford Bishop (DEM – GA)
Rep. Daniel Lipinski (DEM – IL)
Rep. Jared Polis (DEM – CO)
Rep. Peter King (REP – NY)
Del. Eleanor Norton (DEM – DC)
Rep. Alcee Hastings (DEM – FL)
Rep. Jaime Herrera Beutler (REP – WA)
Rep. Matt Cartwright (DEM – PA)
Rep. Brad Ashford (DEM – NE)
Rep. Bill Posey (REP – FL)
Rep. Loretta Sanchez (DEM – CA)
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Highlighting a Kidney Advocacy Committee Liaison

TuffKidney Advocacy Committee Patient Liaison Melissa Tuff has proven that she is a tireless advocate for kidney disease patients.

On March 7th and 8th, she joined the National Kidney Foundation and around 100 advocates in Washington, DC as part of the 3rd Annual Kidney Patient Summit to ask Congress to support vital legislation to kidney patients.

On March 28th, Melissa took the next step in this important mission by working with Melanie Payne at the News-Press to highlight the Summit’s legislative priorities and the needs of kidney patients in the media.  The article, “Kidney patients want new laws,” discusses the legislative priorities our advocates promoted at the Summit, the recently introduced Living Donor Protection Act (H.R. 4616/S. 2584), the costs of kidney disease, and an upcoming event to benefit organ transplant recipients.

If you would like to join her in promoting the needs of kidney disease patients on Capitol Hill and in your local newspapers, please join the Kidney Advocacy Committee by applying hereFor other tips on reaching out through social media, click here.

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An Amazing National Kidney Month!

We had a wildly successful National Kidney Month thanks to you and thousands of other compassionate Americans around the country.

Lkidneydonorfamilyeading into National Kidney Month, the Living Donor Protection Act (H.R. 4616/S. 2584) was introduced by Representative Jerrold Nadler (D-NY) and Representative Michael Burgess, MD (R-TX) in the House of Representatives, and Senator Mark Kirk (R-IL) and Senator Kirsten Gillibrand (D-NY) in the Senate. This bill will protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long term care insurance to living donors, and from charging higher premiums. The bill also clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from donation.

On March 8th, patient advocates from the National Kidney Foundation and other kidney dc2016nkf-100
patient organizations stormed Capitol Hill and the offices of 180 U.S. Representatives and Senators to discuss important strategies for better kidney care in the U.S.  More than 4,125
people took action at home and supported the same priorities by emailing their Representatives and Senators.  Additionally, 180,068 people saw tweets about the kidney patient summit and 38,854 people were reached by Facebook posts.   The tireless work of our patient advocates also helped to generate nearly 200 co-signers for a Congressional “dear colleague” letter in support of NIH funding.  To see pictures and more information about the 2016 Kidney Patient Summit, please see blogs posted on March 7th and March 8th.

Empire State Building 3.21.16Finally, we turned America orange for World Kidney Day.  Cities and states around the country took action to teach Americans about the need for better kidney disease education and management.  Cities across the country turned landmarks orange.  Numerous cities hosted events including KEEP Healthy Screenings , events to spread kidney awareness with policy makers, and sporting events featuring kidney patients and living donors.   Cities mayors and state legislatures also issued proclamations celebrating World Kidney Day and calling for new initiatives to prevent, diagnose, and treat kidney disease.

With National Kidney Month coming to a close, we need you to keep this momentum going.  Reach out to elected officials, media outlets, and support efforts including KEEP Healthy Screenings and Kidney Walks.  What will you do to help us keep moving our message forward?

 

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America Turns Orange For World Kidney Day

On March 10, the Unites States celebrated World Kidney Day in style, turning the country orange.  From East to West, buildings glowed in the National Kidney Foundation’s signature orange color, and kidney screenings and education sessions took place at businesses, hospitals, and city halls. Empire State Building 3.21.16

In New York, the Empire State Building reminded the world that there’s a growing public health crisis in our midst by shining in orange.

Zakim Bridge  3.21.16In Boston, the Zakim Bridge and media board along I-90 turned orange.  Other cities, including Sioux Falls, SD; Charlotte, NC; Minneapolis, MN; St. Paul, WI; Denver, CO; and Pittsburgh, PA also showed their solidarity by lighting their buildings and bridges a bright orange hue.Living Donor  3.21.16

The city of Boston held a KEEP Healthy screening at Boston City Hall, and the New England Revolution Home Opener welcomed the NKF mascot Sidney the Kidney on the field, accompanied by a living donor.

In Cincinnati, NKF and the Cincinnati Children’s Hospital hosted a pediatric kidney disease awareness breakfast with several Cincinnati  3.21.16policymakers, including Sen. Portman, Rep. Chabot, Lt. Governor Taylor, State Sen. Thomas, State Rep. Driehaus, and Mayor Cranley. Guests were educated about kidney disease and were given a tour of the Children’s Dialysis Clinic, the transplant center, and the new state-of-the-art Nephrology Clinical Laboratory/Research Suite – one of the topTX  3.21.16 in the world. Both organizations showcased their efforts to lessen the impact of this disease on patients.

The Governor of Texas and the Mayor of Austin signed proclamations celebrating World Kidney Day and announcing a campaign to educate Texans on steps to prevent, diagnose, and treat kidney disease.  Washington, DC and Pittsburg, PA, as well as the state legislatures in Pennsylvania, Ohio, Kentucky, and Tennessee issued proclamations for World Kidney Day.

In Washington, D.C., NKF and four other kidney patient organizations stormed Capitol Hill and the offices of 180 U.S. Representatives and Senators to discuss important strategies for better kidney care in the U.S. In addition, more than 4,000 people took action at home and supported the same priorities by emailing their Representatives and Senators.

Summit  3.21.16

Around the country, NKF offices and other businesses wore orange to commemorate the day.

NKF Turn Out  3.21.16Charity Dynamics Turn Out  3.21.16

 

 

 

 

How did you celebrate World Kidney Day? Let us know in the comments section below.

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Sitting with Senators

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G.W. Neal speaks with Sen. Murkowski

Transplant recipient G.W. Neal of Alaska met Sen. Lisa Murkowski as she running out the door, but G.W. had just enough time to pull her aside to speak about the Living Donor Protection Act.

 

“I received a kidney from a living donor, and I wouldn’t be here without it,” he said.

“I understand what you’re saying, that we need to take care of the donors too,” Sen. Murkowski said.

Sonya Cochran, of Oklahoma, spoke with Jennifer Bowman, a legislative assistant for Sen. James Inhofe.

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Sonya Cochran (left) prepares for her meeting.

“I had no clue I had kidney disease, I didn’t know what was happening,” Sonya said. “The doctor only mentioned my high blood pressure, I didn’t know it could lead to kidney disease. If it was detected early, I could have postponed dialysis. ”

 

Sonya was surprised to learn that Bowman had a great aunt who also had kidney failure. She told Sonya she would followup regarding initiatives to address chronic kidney disease and early detection.

Cathy Perkins and Jim Meyers met with Sen. Dean Heller of Nevada. Cathy and Jim have polycystic kidney disease (PKD) and spoke about the importance of early detection. In both of their cases, the ability to detect kidney disease early allowed them to properly manage their condition.

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Cathy Perkins and Jim Myers.

“I’m a fifth-generation PKD patient,” said Jim. “I’ve lost six people in my family, including my father. I was diagnosed in my 20s, and because of that I put off dialysis until I was 58.”

“We’re trying to get doctors to detect kidney disease sooner. We want to work with the government to create a payment system that incentivizes early detection among primary care professionals,” Cathy said.

They also spoke to Sen. Heller about the Living Donor Protection Act, and he promised he would speak with co-sponsor of the bill, Mark Kirk (R-IL), about the topic.

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Advocates Prepare to Tackle Capitol Hill

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Advocates get some breakfast in before heading to the Hill for #KidneySummit16

Today, over 100 advocates are heading to Capitol Hill to speak with their representatives in the House and Senate. They will advocate for increased funding for kidney disease research, government action to help prevent and detect chronic kidney disease in its earliest stages, and protection of living donors.

Here are some of the key stats:

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    Kevin Fowler goes over his pitch for the Living Donor Protection Act.

    Over 100 advocates

  • Advocates travelled from as far away as Alaska and Hawaii
  • Advocates include chronic kidney disease patients, transplant recipients, dialysis patients, living donors and family members
  • 11,570 steps will be walked by each advocate today (average from last year’s Kidney Patient Summit).
  • 172 meetings with House and Senate members and their staff
  • 15 U.S. Senators will meet with kidney patients today
  • Temperature for March 8, 2016, high of 75 degrees
  • 3rd Annual Kidney Patient Summit
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Kidney Advocacy Committee Outlines Patient Engagement Agenda

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Kevin Longino, NKF CEO, speaks with members of the Kidney Advocacy Committee at the 2016 Kidney Patient Summit.

To kick off the 2016 Kidney Patient Summit, members of NKF’s Kidney Advocacy Committee (KAC) discussed how best to increase engagement around the issues affecting kidney patient care.

Over 50 advocates tackled six key questions that face kidney patients. Their answers will inform NKF’s patient engagement strategy in 2016 and beyond. Some of the key points included:

Patients need to be involved in fighting kidney disease. No matter how you do it, get involved. If you have kidney disease you need to speak up. Some people can’t advocate for themselves, which makes it even more important that patients advocate for others.

Education is hugely important, whether it’s about medications, expectations, how to treat yourself and advocate for yourself. People also need to be able to engage with their health care team, and not be afraid to say “no” when they are unsure or uncomfortable.

Many of us didn’t know we were at risk until we were suddenly sick. That is why awareness and early detection are important. Education is also important among health care professionals. If a patient starts their kidney disease journey in the emergency room or by seeing a nephrologist, it’s too late.

Emotional wellbeing, and finding ways to help people stay positive, should also be a component of kidney patient health care.

There is a need for more peer mentoring and a better support system that focuses on the patients. There is often a disconnect between patients and doctors. We need to keep things simple, and encourage people to ask questions and understand their care. The overall message — keep it simple!

There should be better ways to access medical records and engage the health system. Professional health platforms should integrate labs, appointments, reminders and prescription information. It should be simple and easy to access because not everyone has a high-speed internet connection and many are not technologically savvy.

Kidney patients need to play a role in the development of drugs and treatments, but we need to be brought in before trials start. Drugs and therapy development should take into account our experiences and our opinions. It’s not only about effectiveness, it’s how it affects our whole life.

KAC members are taking part in the 2016 Kidney Patient Summit in Washington, DC. Learn more about KAC and find out how you can get involved in patient care.

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NKF Awards Outstanding Patient Advocate

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Kevin Longino, NKF CEO, and Gary Bodenheimer at the Washington DC Kidney Patient Summit.

Gary Bodenheimer, of Elwood, NE, has received the National Kidney Foundation’s (NKF) Richard K. Salick Advocacy Award at the 2016 Kidney Patient Summit in Washington, DC.

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.

“Gary exemplifies that same spirit of service,” said Kevin Longino, CEO of the National Kidney Foundation. “He’s constantly in his local community, helping others and educating them about kidney disease and I am happy he’s part of NKF’s advocacy team.”

Bodenheimer was diagnosed with stage 4 chronic kidney disease (CKD) in 2013. Since his diagnosis he has made it his mission to raise awareness of CKD, especially among those at risk.

“When I talk to people, I say get tested, don’t wait. Chronic kidney disease has no symptoms, it’s a silent killer,” Bodenheimer said. “Get to the doctor, it won’t hurt, they can tell you if your kidneys are functioning properly.”

Bodenheimer is an active Kidney Advocacy Committee patient liaison with the National Kidney Foundation, and on any given day can be found staffing information tables at community fairs in his home state of Nebraska, speaking with the media to help inform the public about kidney disease risk factors, communicating with pharmaceutical companies about various health issues, and advocating in Washington, DC for better care for kidney patients.

“I’m not trying to cure the world,” he said. “I have a good day if I get one person to go to the doctor and get tested, that’s my good day.”

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