Kidney Walkers Take Capitol Hill

In total, 100 advocates had meetings with 150 representatives and their staff members. Advocates shared their stories with Congressmen and pushed for legislation protecting kidney patients and donors. Advocates also talked about kidney disease awareness, immuno drug coverage, research, organ donation & more.

Among the 100 kidney patients, donors, and family members participating in the 2015 Kidney Patient Summit, many of the advocates have also been involved with the Kidney Walk. These walkers/advocates include Madi, an 18 year old kidney recipient who has been invited to speak at the upcoming Denver Walk; Jim, who has been involved with the Indiana Kidney Walk; Cody and Maggie, top fundraisers for the 2014 Iowa Walk; Dwayne aka Rusty, a CKD patient and top fundraiser at the South Carolina Kidney walk for the past 5 years; Shannon & Robert, from the NKF Florida office; and Jennifer, a living donor in New Mexico who is working on setting up a Kidney Walk in her area.

Thanks to all our advocates for making the 2015 Kidney Patient Summit a huge success!

The National Kidney Foundation had a staff member on site during the two day Summit to live-blog the event. Here’s a great recap of Day 1 & 2 on Capitol Hill:

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

Posted on March 2, 2015 by nkf _advocacy

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 1_820pmThe 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

Day 1_630pmSarah 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!

Day 1_400pmEven 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.

    Day 1_4_00pm

    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.

Day 1_300pmDonors, 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

Day 1_200pm

            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 gained 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.”

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

Posted on March 3, 2015 by nkf _advocacy

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
Day2_830pm“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
Day 2_8_30pm“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

Day 2_630pmDr. 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

Day 2_600pmAfter 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.”

Kevin Longino, who chairs the National KidDay 2_6_00pmney 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

Day 2_415pm

Q: Tell everyone a little about your story
Drew: “I’m 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.

Day 2_330pmNothing 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.

Day 2_200pmThis 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

Day 2_1200pmSuzanne 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

Day 2_1030amAlice 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

Day 2_900am

             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

Day 2_800amIt’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.