Kidney Patient Speaksup About Healthcare Reform
The American Association of Kidney Patients Among Participants in the 21st Century Roundtable Discussion Hosted by Congressman Gus Bilirakis
On Tuesday, August 19, the American Association of Kidney Patients (AAKP) participated in the 21st Century Cures roundtable discussion held in Tampa, FL and hosted by Representative Gus Bilirakis(R-FL), member of the House Energy and Commerce Committee’s Health Subcommittee. The roundtable focused on strategies to accelerate the development and delivery of better treatment options, medications and devices for America’s chronically ill.
For patients with kidney failure, there are two treatments: a transplant, which is the most optimal therapy. Dialysis is the other option. While dialysis keeps people alive, the therapy has seen only incremental improvements since it was invented. Tragically, on average, half of the people who start dialysis are not alive three years later (USRDS 2014).
This was the first of two roundtable discussions in which patients were able to discuss the personal challenges they face each day. AAKP Member Janice Starling was among the 10 patient panelists. “Unfortunately, there have been fewer clinical trials in kidney disease than in any other field of internal medicine. As a result, there are very few new breakthrough drugs and devices that treat kidney disease,” Starling told the panel.
Starling also told the panel about AAKP being a part of a public-private partnership with the FDA called the Kidney Health Initiative. Through this initiative, AAKP is working with the FDA to host a public workshop where the FDA, the device industry, and patient advocacy groups can come together to discuss incorporating patient preferences into product development and regulatory decisions for kidney therapies.
“We appreciate Representative Bilirakis listening to the challenges our patients face. We need friends in Congress to help us get past barriers so that development of potential treatments or cures can move forward,” stated AAKP Executive Director Gary Green.
To read Janice Starling complete testimony, visit www.aakp.org/advocacy/public-correspondence.html.
AAKP was founded in 1969 by a group of six kidney patients. Celebrating its 45th Anniversary, AAKP has evolved to be the primary source of advocacy, education, and interaction for chronic kidney disease patients, ESRD patients and kidney transplant recipients, as well as the families and professionals who support them in improving their health and their lives.