National Kidney Foundation Applauds Proposal to Address Chronic Disease Care

The National Kidney Foundation (NKF) is pleased with the Senate Finance Committee’s announcement, under the leadership of Chairman Orrin Hatch (R-Utah) and Ranking Member Ron Wyden (D-Ore.), to lower healthcare costs and improve care for individuals with multiple chronic illnesses.

According to the committee, the vast majority of Medicare dollars are spent caring for patients living with multiple persistent, chronic health conditions like chronic kidney disease (CKD). The variety of services required for this care can often be uncoordinated and costly.

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Support Federal Funding for Kidney Disease Research and Programs

By Kevin Longino, Interim Chief Executive Officer, National Kidney Foundation

Each year, federal funding for kidney disease must be appropriated by Congress.  Important work is being done at the Centers for Disease Control and Prevention (CDC), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the Health Services and Resource Administration (HRSA) to advance kidney disease research and improve access to kidney transplantation.  However, this work can’t continue or grow without funding.  This is why we need your help. Please email your members of Congress and request that they increase federal funding for kidney disease research and programs.

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NKF Unites with other Chronic Disease Organizations to Improve Patient Care

Advocates on Capitol Hill raise awareness of patient needs

Advocates on Capitol Hill raise awareness of patient needs

Did you know that the number one cause of death, disability and rising health care costs in the US is chronic illness? Diseases such as diabetes, kidney disease, heart disease, and depression affect the quality of life for 145 million people—that’s almost half of all Americans. And this number rapidly continues to rise. Despite these scary statistics, the challenges facing patients with chronic disease is not well known to the general public or policymakers. On April 16th, the National Kidney Foundation (NKF) will join together with the Partnership to Fight Chronic Disease (PFCD) on Capitol Hill for the Talk2Patients Advocacy Day to increase awareness about patient needs and the rising rate of chronic diseases.

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My Kidney Story

By Kevin Longino, Interim CEO, National Kidney Foundation

Kevin Longino pic My name is Kevin Longino and I am a kidney transplant recipient, long-time kidney care advocate and the new interim CEO for the National Kidney Foundation (NKF). As someone who has a long history with kidney disease, I am excited to take on this new challenge. Kidney disease has been a part of my life in some way for as long as I can remember. My maternal grandfather died of kidney failure in 1953. He was only 41 years old. My mother has been living with kidney disease most of her adult life. And when I was 39 years old, I was diagnosed with Focal Segmental Glomerular Sclerosis.

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Orange you glad you celebrated World Kidney Day? We are!

Take a look at just a few of the ways World Kidney Day was celebrated around the country!

WKD in NY Continue reading

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Kidney Patient Summit – Social Media Roundup

In case you missed any of our live blogging coverage of the 2015 Kidney Patient Summit, read up on Day 1 and Day 2‘s activities.

In total, 100 advocates had meetings with 150 representatives and their staff members. Not only were our 2015 advocates successful in reaching out to members of Congress on Capitol Hill, but they were also active in promoting their messages on social media. Here are some of the highlights (click on the photos for larger images):

Facebook

Will copyAlexandra copy Alexandra2 copy allison copy Dave copy Erin copy Kevin and Dave copy NephCure copy Pal2 copy Paul copy PKD copy Reluctant copy

Twitter

Tonya copy NKF copyRyan copy PaulRyan copy  John and Erin copy IGA copyIGA2 copy  Cheryl copyHaley copy

Instagram

Insta_LisaJackson71 copy insta_Melissa copy insta_NKF copy Insta_NKF2 copy

Thanks to all our advocates for making the 2015 Kidney Patient Summit a success. Continue the efforts all year long by joining our Advocacy Center.

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2015 Kidney Patient Summit – Day 2, Washington, D.C.

Welcome back to the live blog for the 2015 Kidney Patient Summit in Washington D.C. Read all about Day 1 here and check back for regular updates!

8:30pm – That’s a Wrap, Here are our Highlights!

The 2015 Kidney Patient Summit was a huge success! Scroll down to read the day’s activities (day one activities can be read here), and join our advocacy network to build the momentum around kidney issues. Check back tomorrow for a roundup of our advocates’ social media posts. And finally, here are the highlights from NKF’s government relations experts:

Tonya Saffer, Senior Health Policy Director, NKF
Tonya“My highlight was our very last meeting with Sen. Chuck Grassley of Iowa. He actually came in and spoke face-to-face with our advocates. Afterward, Grassley’s health policy advisor told the advocates how important their work was and encouraged them to keep talking about the issues they believed in. It meant so much to hear that our advocates were inspiring their representatives.
It’s important for everyone to know this is not a one-time thing. Everyone should follow-up with their representatives, let them know your issues and keep following up throughout the year. Join our advocacy network for more information on how you can advance kidney causes.”

Troy Zimmerman, Vice President, Government Relations, NKF
Troy“We had a few minutes with congresswomen Susan Brooks of Indiana’s 5th District. She spent about five minutes with us and asked informed questions about kidney disease. She also spoke with one of our young advocates about being a pediatric kidney patient. She seemed really interested in the issues. The Congresswoman is on a health committee with the House of Representatives, so there are exciting opportunities to work with her going forward.
The advocates were thrilled to connect with other people who share their same passion for the cause, and it was empowering to have them visit with their representatives and make their case on Capitol Hill.”

6:30pm – Director of NIDDK speaks at Kidney Summit

DrRodgers

Dr. Griffin Rodgers, Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is the keynote speaker at the Congressional Reception.

“We’re not only slowing the progress of kidney disease, but we’re looking at ways to reverse it, even with limited budgets,” he said. “If we don’t do it now, when are we going to do it? We’re making progress toward a cure, an eventual cure for this devastating disease.”

You can view his PowerPoint presentation about kidney disease in the United States and the work of the NIDDK by clicking this link.

6pm – The Kidney Patient Summit Congressional Reception

bruceAfter a long day of congressional meetings, the 2015 advocates are settling in for the 2015 Kidney Patient Summit Congressional Reception. Bruce Skyer, CEO of the National Kidney Foundation, kicked off the reception with a warm welcome to the advocates and government representatives in attendance.

Jummy Olabanji, an anchor at ABC7 in D.C., is the master of ceremonies. She found out she had a genetic kidney disease after going to the doctor for high blood pressure. She’s also doing something about it — she changed her diet and has started running to keep her kidney disease in check.

“My kidney disease it is genetic, but for so many Americans it can be prevented,” she said. “Collectively, we can all get something done to change to course of kidney disease.”Jummy

Kevin Longino, who chairs the National Kidney Foundation’s advocacy committee, has a family history of kidney disease. Even knowing this, he was living a life with “too much coffee, too much protein and 60-80 hours of work a week”.

“Basically, I was doing everything wrong. The doctor said with the path I was on, I would need a transplant within 6 months,” Longino said. “I changed my lifestyle and I was able to postpone the need for dialysis for four years. I am a big believer in awareness of kidney disease and I am impressed with all the other organizations here that are supporting research and awareness of kidney disease.”

4:15pm – Meet the Advocate

Q and A with Drew Taylor of Indianapolis, Indiana

Drew2Q: Tell everyone a little about your story
Drew: “Im a kidney patient. I was diagnosed with Alport Syndrome at the age of 6. I was getting medication and feeling better, but I went into kidney failure. Now I’m 11, almost 12, and I am on PD dialysis.

Q: How is it being young and on dialysis?
Drew: It’s hard, but as long as you do what the doctors tell you you’ll be fine! I can’t swim in rivers, lakes or oceans, but I can do pretty much everything else.

Q: What are you advocating for?
Drew: Kidney disease is very important issue and it affects many people. We want more funding for kidney disease research. Many doctors don’t know about Alport Syndrome, there is a lot of research that needs to be done still.

Q: How is it participating in the 2015 Kidney Patient Summit?
Drew: It’s pretty fun! I’m here with the Alport Syndrome Foundation. We went around and got to talk with a bunch of different people and after lunch we got a tour of the Capitol! I think it’s really cool, because not only was I able to come here and see sites, but I am able to be heard by very important people who represent my state.

3:30pm – Rescheduling Dialysis to Participate in D.C.

curtis shotNothing will keep Curtis Cotton, of New York, NY, from participating in the 2015 Kidney Patient Summit.

Curtis has been on in-center dialysis since his kidneys failed due to high blood pressure in 2001. Today he is supposed to be on dialysis, but he is missing his regular treatment schedule to participate in Capitol Hill meetings with his local representatives.

“I’m missing my treatment today,” he said. “I will be back on dialysis tomorrow, but to me this is important and we need to recognize and participate.”

The 2015 Kidney Patient Summit has exposed Curtis to a world of new ideas and people. He has met his first living kidney donor, and countless other who have different kidney diseases and causes.

“It’s been good to see some of the other faces of kidney disease,” he said. “Kidney patients need to be more active and find out what’s going on in the kidney community and how they can help. There’s no excuse for not getting involved!”

2pm – Colorado is for Kidney Advocates

Shar Carlyle of California and Haley Newkirk, Madison Ferner, Stacy Ferner and Sally Reif of Colorado met with Curtis Swager, Legislative Director for Cory Gardner of Colorado.

coloradoThis has been an eye-opening experience for Madison Ferner, 18 (in photo, top left, head of table). Madison has FSGS, she has undergone every type of dialysis and has received two kidney transplants.

“I am going to major in political science at Colorado University next year, so this has been amazing for me,” she said. “I’ve learned so much about other diseases and perspectives from patients too. I’m honored to be here on Capitol Hill making a difference for kidney patients.”

12pm – Advocating for Immunosuppressive Coverage

JoAnn Villanueva, Bill Ruff and Suzanne Ruff on Capitol Hill

RuffSuzanne donated a kidney to her sister JoAnn. They met with Katie Talento, Legislative Director  for Senator Thom Tillis of North Carolina. They discussed immunosuppressive medication coverage under Medicare.

“Katie agreed with us that 36-month coverage for immunosuppressant medications under Medicare was archaic, and didn’t make financial sense when you realize the cost of having to put someone back on dialysis if they lose their transplant” said Bill Ruff.

For JoAnn, it was an emotional moment asking for Senator Tillis’ support.

“I was crying with Katie, because I am so passionate about extending coverage of immunosuppressive drugs,” she said. “If I stopped taking these medications, I would undo what Suzanne did, and she saved my life.

10:30am – First Meetings

Advocate meetingAlice Thurston, Washington, DC, AAKP, has post-strep glomerulonephritis and has had three transplants

Wanda Pierson, East Point, GA, NKF, has glomerulonephritis 

Walt Hunt, Acworth, GA, is a patient with polycystic kidney disease (PKD)

Three advocates are speaking with John Eunice, General Counsel for Senator David Perdue of Georgia. They are presenting their case for their specific issues:

Alice is pushing the Living Organ Donor Protection Act. “I’m here because my brother, he has two five-year old twin boys, and he is subject to potential discrimination for long-term care and disability insurance because he was a living donor. I would like to see him protected.”

Wanda wants everyone to learn more about kidney disease and the issues around kidney disease. She was diagnosed two years ago, and didn’t know about kidney disease. “Both my parents passed away from cancer, everyone knows about cancer, but people don’t know about kidney disease.”

Walt Hunt, is pushing for an increase in basic research and trial work around kidney disease. His pitch is for an additional $2.1 billion for kidney disease studies through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). He would also like Senator Perdue to support Medicare coverage for transplant recipients, “That would provide medications under Medicare for kidney recipients to keep their organs.”

9am – 10-Year Kidney-versary on Capitol Hill!

Sally Reif, Centennial, CO, living donor
Shar Carlyle San Rafael, CA, PKD patient and kidney recipient

Shar Carlyle and Sally Reif

Shar Carlyle and Sally Reif

On March 2, 2005, Shar Carlyle received a kidney from Sally Reif. At the 2015 Kidney Patient Summit, they are celebrating the tenth anniversary of their transplant procedure.

The pair met in a way that was new and unusual ten years ago — online. Shar had originally posted her profile on the newly created website Matching Donors, which attracted Sally’s attention for a school project.

“I was doing a paper for school on internet ethics, and thought the topic of organ donation would be interesting to pursue. That’s how I found Shar,” she said. “Initially, I called to ask about the process and found out her father and brother had both died from PKD… I decided to get tested and was a match.”

At the time, finding donors over the internet was rare, and many hospitals had policies against performing transplants on people who had met online. Nevertheless, the pair proceeded with the transplant. Both are healthy and well today. You can read more about Shar’s journey in this Mercury News article, and you can read about Sally’s decision to be a living donor in this Summit Daily article.

Shar describes herself as a “crunchy liberal”, while Sally would do just about anything to “get a Republican vote”. They are a testament that kidney issues transcend political lines and are living proof that friendships are stronger than politics.

“It’s something we can come together on. We are united to help kidney patients and improve quality of care and access to medications,” Shar said.

Both have done their part to advance the kidney cause. Sally has helped convince others to be living donors, while Shar volunteers for the PKD Foundation and NKF. She also conducts an educational program about kidneys and organ donation in under-served communities.

“She’s really using my kidney well,” Sally said.

8am – Coffee and Excitement

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It’s going to be a big day on Capitol Hill. Advocates are getting ready, signing banners, finalizing meetings, and drinking plenty of coffee for the 12+ hour day ahead.

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2015 Kidney Patient Summit – Day 1, Washington, D.C.

We’re live blogging for the 2015 Kidney Patient Summit in Washington D.C. Check back for regular updates!

8:20pm – That’s a Wrap for Day 1

Day 1The advocates have finished up day 1 of the 2015 Kidney Patient Summit and are now getting rest for a long day of congressional meetings. Stay tuned for tomorrow’s live blogging from Capitol Hill. Patients will be meeting with their representatives and taking action for all the nation’s kidney patients and organ donors. Read the day’s news and find out how you can get involved in kidney advocacy below, or sign up to take action at https://www.kidney.org/takeaction

6:30pm – Meet the Advocate

Sarah K. Finlayson – Kidney Recipient

Sarah FSarah Finlayson, from Peabody, MA, has dealt with kidney disease for 45 years. After being diagnosed at two years old, she was one of the first people in the United States to undergo peritoneal dialysis. She has since had two kidney transplants and continues to share her story with other patients as a peer mentor for the National Kidney Foundation.

Here is a letter Sarah wrote to newspapers in her community before she came to D.C. for the 2015 Kidney Patient Summit:

A few months past my second birthday, I was diagnosed with Focal Glomerulosclerosis a rare kidney disease with no cure. This was over 45 years ago, in a time when child kidney transplants and peritoneal dialysis were merely theoretical. 

While most kids are riding bikes, I began a daily regimen of hemodialysis. For over 45 years, I’ve battled kidney disease and cancer. I’ve been on hemodialysis, peritoneal dialysis and have received and lost a transplant.

My story has a great ending. I received a second, successful kidney transplant from my younger sister in 2005 and I have been healthy since that day.

I have been through a lot, but I want to let your readers know that there is hope and there are actions they can take to support those with kidney disease and organ transplants.

On March 2-3 I will be traveling to Washington D.C. to speak to representatives as part of the National Kidney Foundation’s Kidney Patient Summit. I will be urging legislators to fund research, protect kidney patients and raise awareness of kidney disease. I hope your readers will support my trip by signing a petition at www.kidney.org/takeaction.

Through the research, education, hard work and most importantly – community – we can ensure a better future for kidney patients and organ recipients. By spreading this message we can also let others know, they don’t have to go through this journey alone.

4pm EST – What You Can Do, Today!

Kidney LogoEven if you’re not in D.C. for the 2015 Kidney Patient Summit, there are things you can do today to advance the kidney cause:

  1. Improve early diagnosis and management of kidney disease. Ask your representatives to include a provision in the draft 21st Century Cures Bill to address 21st Century Chronic Diseases that specifically directs the Secretary of Health and Human Services to conduct a study on diagnosis, progression and outcomes in Chronic Kidney Disease (CKD). This will help our nation’s healthcare professionals identify, monitor and treat kidney disease.
  2. Ask for an increase in funding for the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK). Contact your representative on the House and Senate Appropriations Committees and ensure funding for kidney disease research at the NIDDK is increased by 6% over the President’s proposed budget.
  3. Strengthen the Medicare ESRD program for kidney patients! Ask your representative to support: a) The Chronic Kidney Disease Improvement in Research and Treatment Act (S. 538/HR 1130) to allow dialysis patients the choice to enroll in Medicare Advantage, which has caps on the amount we can be required to pay out of our own pockets for medical care. b) Extend Medicare coverage of immunosuppressive drugs for the life of the kidney transplant. Currently, Medicare coverage ends 36 months post transplant for those under age 65.
  4. Help protect living donors by asking your representative to cosponsor the Living Donor Protection Act when it is reintroduced by Representative Nadler (D-NY) this year.  This bill will prohibit insurance companies from discrimination against living donors and will extend employment protection to living donors under the Family Medical Leave Act.
Tonya Saffer, Senior Health Policy Director, talks about the key issues for advocates to address at the Kidney Patient Summit.

Tonya Saffer, Senior Health Policy Director, talks about the key issues for advocates to address at the Kidney Patient Summit.

3pm EST – Why We’re in D.C.

groupDonors, recipients, kidney patients and their family members are in D.C. to urge legislators to fund research, protect kidney patients and raise awareness of kidney disease.

Why is this important? According to new research, reported in this Washington Post story today, experts are predicting that half of U.S. adults could get kidney disease in their lifetime. Kidney disease is an urgent problem our leaders need to address!

You can be part of the solution by signing up to join our advocacy network.

2pm EST – Meet the Advocate

Ted Garding – Organ Donor

Ted Gardin - Eagan, MN

Ted Gardin – Eagan, MN

Ted Garding of Eagan, MN woke up on Easter morning in 2010 and read an article about living organ donation in his local paper. The thought suddenly struck him:

“This is something I am healthy enough to do.”

Garding registered to be an undirected altruistic donor, and gave a kidney to a 28-year-old man from Wisconsin.

“It was the most rewarding and educational experience I have ever had,” he said.

The man who received the kidney told Garding after the donation that he had been sick his whole life, and finally knew what it was like to feel well.

“That was the best gift I’ve ever received,” Garding said. “I’ve gain a new friend, and I’ve never felt better mentally and physically in my life.”

Now Garding is actively involved with the National Kidney Foundation, spreading awareness of kidneys and kidney disease by giving Your Kidneys and You presentations, and becoming an advocate at the 2015 Kidney Patient Summit.

“If I had never seen that article, my donation would never have happened,” Garding said. “That’s why I think awareness is so important. People should be aware of organ donation and aware of the disease itself. That’s why it’s a pleasure to be part of the NKF’s advocacy summit.”

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Kidney Patients Team Up in Washington, D.C. To Raise Kidney Disease Awareness

What better way to kick off National Kidney Month than by bringing together kidney patients, transplant recipients and living kidney donors? The National Kidney Foundation (NKF) is hosting our annual patient summit March 2-3 in Washington, D.C. This powerful event allows individuals affected by kidney disease to speak directly to legislators and urge them to make kidney care a congressional priority. Attendees have the opportunity to meet with Members of Congress and their staff to share personal stories and advocate for policies that will raise awareness of kidney disease, increase research funding, improve treatment for kidney patients, and protect living organ donors. Continue reading

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Final Countdown! A Few Days Left For Health Insurance Open Enrollment

There are only 4 days left and counting to get health insurance through the Marketplace during open enrollment. If you are currently uninsured don’t miss out on this opportunity to get health insurance that will allow you to access health care services you need to protect your kidneys. Learn more about how you can get health insurance and how to be prepared to compare options.

If you currently have health insurance, but lose it after the enrollment period ends, you may qualify for a special enrollment period. You can learn more about eligibility for special enrollment periods at healthcare.gov.

stopwatch

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