Empowering Kidney Patient Summit Advocates to Make a Difference

By Kevin Longino, Kidney Transplant Recipient and CEO of the National Kidney Foundation

I am excited to welcome more than 100 activists to Washington, DC to advocate on behalf of the 30 million Americans with kidney disease representing National Kidney Foundation, Alport Syndrome Foundation, PKD Foundation and American Association of Kidney Patients. Each one of our advocates has been impacted by kidney disease, either as a patient, caregiver, or living organ donor and know the enormous impact that it has on everyone in the kidney community.


In just a few hours, we will begin our advocate training program to and will present united front on Capitol Hill to encourage legislators to become supporters and co-sponsors on our vital policy priorities:

  1. The Living Donor Protection Act (S.511/H.R.1224) – Introduced last month, it would prohibit discrimination in life, disability or long-term care insurance for living organ donors and offer job security by codifying into law that living donation is covered by the Family Medical Leave Act.
  2. Extending Medicare coverage for immunosuppressive medication indefinitely – Transplant recipients need immunosuppressive drugs to maintain their kidney transplant and lower the risk of rejection. For kidney recipients who are not Medicare aged or Medicare disabled, Medicare covers immunosuppressants for only 36 months post-transplant, leaving many recipients struggling to find affordable coverage. Extending Medicare coverage for immunosuppressive medications indefinitely ensures patients have access to these lifesaving medications and enables more patients to consider a transplant.
  3. Increasing Appropriations funding for vital kidney disease research and programs – Increasing funding in Fiscal Year 2020 for: CDC’s Division of Diabetes Translation’s (DDT) CKD Surveillance Project; the Health Resources and Services Administration’s (HRSA) Division of Transplantation and Bureau of Primary Care; the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); and KidneyX, the Kidney Innovation Accelerator.

Do you want to part of our Kidney Patient Summit this year and help our advocates be as successful as possible?  First, write your legislators about how important our policy priorities are for patients, their families and living organ donors. Briefly include your own story to show your legislators’ offices how close to home these issues hits you.

Then follow us on Facebook and Twitter, share our advocates’ messages and message your legislators to let them know how you feel and reach all of their followers!   You can get some tips and samples on our Summit social media guide!

Finally, we need more amazing advocates to help us promote improved kidney disease policies in Washington and around the country.  Join us as an advocate by emailing NKFadvocacy@kidney.org and telling us that you want to make a difference too.  Maybe you will be able to join us in 2020 when we come back to Congress to share our hard-fought victories!

Do you want to learn more about the Summit?  Visit the Summit’s website to learn more about the event, view legislative materials, see photos from last year, or write your legislators.

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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1 Response to Empowering Kidney Patient Summit Advocates to Make a Difference

  1. Lynne Morin says:

    Let’s go advocates!

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