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.”

About nkf _advocacy

The National Kidney Foundation's advocacy movement is for all people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. We empower, educate and encourage you to get involved on issues relating to CKD, donation and transplantation.
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8 Responses to 2015 Kidney Patient Summit – Day 1, Washington, D.C.

  1. Pingback: 2015 Kidney Patient Summit – Day 2, Washington, D.C. | Advocacy in Action

  2. Pingback: Kidney Patient Summit – Social Media Roundup | Advocacy in Action

  3. Susna and Ernie brown says:

    Super proud of our daughter Sarah who shared her life story….she is one amazing person…we love you to the moon!

  4. Pingback: Kidney Walkers Take Capitol Hill | Kidney Walk

  5. joe cannestra says:

    THANK YOU TED, WHAT A GREAT SACRIFICE, I THANK OUR GREAT AND HOLY GOD FOR YOU, HIS BLESSING ON YOU!

  6. jahanzaib tahir says:

    my twin babies hAVING TBMD SO PLEASE I NEED YOUE CONSULTATIN THANK they get this dieases from me i m mother , i hve this dieases since many years i knew, now they are 4.6 years they are faternal twins ,im very worried about them here in pakistan no such a good system to treat them plz help me

    • Hi, we are not doctors but I have forwarded your message to our NKF Cares Patient Information Specialists to see if they can provide any educational materials to you.

      National Kidney Foundation

  7. Pamela D Ballard says:

    So important for all of us ! I have dealt with CKD for 37 years. Lost entire left kidney in 1979.
    In 1995, the top of right kidney had embolism; less than half functioning at 32 percent for over 15 years. In April of 2015, a huge 13″ incision (remainder was 20cm in size).
    My kidney suddenly stopped working; had to have emergency catheter put in 4 years ago.
    I have not one but two genetically inherited diseases. I take one day at a time, and I encourage everyone to take good care of your kidneys. I have no gallbladder or appendix – now no kidneys at all. Hated to lose what I had left…….knew it to be a new normal where I learned it’s much harder to
    control my labs.

    Staff is simply amazed ! They have problems with other patients with some kidney
    patients with some kidney function – don’t make any effort to take care of themselves.
    I’m very frustrated with the State of Georgia, where I live. I’m experiencing incompetence issues. Because the state’s Medicaid/Medicare entered my application incorrectly three times. I have filed for an appeal. Their treatment to patients needing assistance; is to treat them like a dog. Make them feel like dirt. I will not let them do me this way. Before I get through this, I may enlighten them.
    Monthly dialysis, 90k/mo. My 20 percent (Can’t buy a supplemental policy) because I have been too sick for too long.

    Who can afford this 20% copay every month! I cannot afford to live, go on vacation, afford paid TV services, difficult to pay for some medications. I am speaking on behalf of all dialysis patients for I realize there many others experiencing same frustration!
    deD
    Congress needs to do their job! Many of us in dialysis are not there with just ESRD.Most of us are on hemodialysis because of kidney cancer, serious illnesses with no known cure.
    Please wake up, America. In the future 50% of the entire population will need dialysis services!
    May those of you who shared your lives with me and many other patients, may you each receive a very special blessings!!

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