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:
- Providing adequate funding to dialysis patients
- 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)
- Asking Congress to join the Congressional Kidney Caucus
- Inviting our legislators to come visit a dialysis clinic to better understand the needs of dialysis patients
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.|