Friday, March 15, 2013

World Kidney Day on The Hill

Happy (belated) World Kidney everyone!!!  Yesterday was World Kidney Day and I had the awesome opportunity to spend it on Capitol Hill with Dialysis Patient's Citizens, advocating for dialysis and transplant patients.  It was a truly awesome, albeit exhausting day!

I got connected with Dialysis Patient's Citizens (DPC), a nonprofit agency that advocates for and provides educational support to dialysis patients around the country.  Last year after applying to become a Patient Ambassador, I believe I became their first and only voice they've ever had for pediatric dialysis patients and I'm quite proud and excited to be their voice.  I've also been guest blogging/writing for them about what it means to be a pediatric dialysis patient and caregiver. You can read my posts by clicking on The Patient's Voice.

Once a year, DPC does a fly-in to DC, where they bring in Patient Ambassador's from all over the country, from all walks of life, and all ages, as well as other dialysis-industry people, and they all spend the day on Capitol Hill advocating for different issues that affect dialysis patients.  This year the four main issues were:

  1. Providing adequate funding to dialysis patients
  2. Co-sponsoring the Comprehensive Immunosuppressive Drug Bill (extend Medicare coverage of immuno-suppressant drugs for transplant recipients past the 36 month mark) that has been introduced into the Senate (Senate Bill 323)
  3. Asking Congress to join the Congressional Kidney Caucus
  4. Inviting our legislators to come visit a dialysis clinic to better understand the needs of dialysis patients
Throughout the day, myself along with one other Patient Ambassador (a young woman who had received her first kidney transplant at 17, and had just received her second transplant from her husband last year), and four others from DaVita, traveled all over the Hill visiting with legislative aides and correspondents from Senator's Kaine (VA), Warner (VA), Mikulski (MD), and Cardin (MD) offices, as well as Representative's Cantor (VA), Wolfe (VA), and Cummings (MD).  At each stop, myself and the other Patient Ambassador would share our personal stories and relate it to why it was important to co-sponosor the bill. And the folks from DaVita would give the number/statistical side of things.  I think we were a perfect mix together and were really able to engage most of the people we met with.  Two could have cared less, but that's Washington, right?

It was also really educational for me as well to see first-hand how this process works and really how things actually work and get done on Capitol Hill.

But most of all, I got to do what I love to do the most, and that's sharing Stephen's story and the story of all of the other children and their families that I know who struggle through chronic kidney disease.  It's always amazing to hear how the pediatric patients are often times forgotten about because they make up such a little piece of the dialysis puzzle (1% of all dialysis patients) and the Medicare-reimbursement puzzle too. But I love when people's jaws drop open and eyes pop out when I tell them about Stephen and show them pictures of his journey.  My heart just swells when I get to brag about how awesome he is!

Our guide throughout the day yesterday though was a woman who advocates for and who works with the American Association of Pediatric Nephrology.  I'm pretty sure they put her in our group for a reason and I totally appreciated that! I hope that she and I are able to work together in the future on some more patient advocacy issues related to pediatric kidney disease. God knows these little guys and gals need a voice!!!

Group picture in the morning before our crazy day began.

Here is our group, minus one member, after meeting with an aide from Senator Warner's office who was very engaged and knew quite a bit about dialysis.

My "flair" for the day.  I proudly wore my Stephen Charles Schwartz ARPKD awareness pin, the Donate Life pin, and the DPC pin.


  1. Sounds like a busy and effective day!!

  2. Thank you for all you do. You not only help patients with kidney issues, but you make the world a better place for everyone.

  3. Dear Lindsey,
    Uncle Dick and I are so proud of you! The way you have advocated for Stephen and your care and devotion to him are the true definition of love. We ALL have learned so very much from both you and Superman.

    Aunt LuAnn

  4. To Our Lovely Lindsey ...... Dad and I are so very proud of you as well as Bill. We love that you had the opportunity to share Stephen's journey and perhaps be able to advocate and assist others with their challenges. Keep blogging and helping others!

    We ask all those reading to pray for Stephen and Kristin as they enter their extra hard challenge on April 11th.

    Love .....Mom & Dad aka -- Mimi & Poppa

  5. Wow ! Your amazing ! We are all sending prayers for Stephen on his big surgery coming up on April 11. Sending lots of hugs your way ! Love , Carrie, Tom, CC, Tommy and Quentin