Written by Orlando A. Torres, a DPC Patient Ambassador from Guaynabo, Puerto Rico
Last year, I participated in my first Dialysis Patient Citizens (DPC) virtual Fly-In. DPC is an advocacy organization that represents all kidney patients in our community. The Fly-In was a virtual event where kidney patients, along with DPC staff, and other advocates, engaged in conversations with Congress members and their staffers in relation to new legislation to benefit renal patients. We discussed the concept of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act that extended Medicare coverage of life saving immunosuppressive medications for the life of the kidney transplant. This bill, which was signed into law, will take effect in 2023. It will help protect transplanted patients from losing their new kidney, in the Continental USA and its territories.
Earlier this year, DPC invited me to participate again in talking with members of Congress and staffers, to discuss important bills that benefit kidney patients. This year, we talked with our respective Congress members about HR 4942/S 2649 The BETTER Kidney Care Act. The principal objective of this bill is the creation of a new legislation focused on care coordination for kidney disease patients. Medical practitioners, in addition to the nephrology team, can produce a positive outcome in the patient’s overall care. A good structure with the participation of a cardiologist, endocrinologist, social worker, and renal nutritionist (among other professionals), will produce better quality of life outcomes for the renal patient.
As a renal patient already transplanted, being able to share my experience through all my CKD stages was a great motivator for me. Instead of receiving a theory about the bill or someone promoting the value of the bill, the Congress members received a real-life description from a person who has lived with kidney failure and is dealing with the reality of good or bad treatments throughout his CKD progression. The Congress members always valued the time we took to educate them with our personal experiences and stated our participation gave them an opportunity to evaluate the facts of the bills.
I recommend to all renal patients that you invest time and effort in sharing your experience with your community leaders and participate in programs and organizations such as Dialysis Patient Citizens.
