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Joining Forces With Patients for a New Paradigm in Transplants

Ronald G. Gill, Ph.D.

President, American Society of Transplantation

Unless transplantation has impacted your life in a meaningful way, it is unlikely that you are aware of the complications and challenges faced by transplant recipients. The waiting list to receive a life-saving organ in the U.S. is now nearly 120,000 people long, and waitlist durations and sizes vary by region. Did you know that, on average, 22 people die every day waiting for an organ, and those that are fortunate enough to receive one are required to take anti-rejection medication for the rest of their life?

An ongoing struggle

Moreover, for most transplant recipients, their new organs do not last forever. Even with anti-rejection medication, the average kidney transplant lasts fifteen years. Some types of organs have considerably worse outcomes, such as lung transplants that often last less than five years. This can result in recipients requiring two, or even three, transplants within their lifetime.

However, with the growing waiting list, their chances for a retransplant are increasingly slim. For example, the OPTN/SRTR 2015 Annual Data Report: Kidney reports that 13 percent (12,783) of the 97,680 individuals on kidney transplant waiting list at the end of 2015 were awaiting a retransplant. The need for retransplant only compounds the overall need for organs since organ donation rates do not match this demand.

A meeting of minds

Unfortunately, those outside of the transplant community have little awareness of these facts, and many do not realize that organ transplantation is right now simply a treatment, not a cure.

October of this year will mark the first ever Transplant Patient Summit. The summit will bring together recipients and donor families, transplant providers, policy makers and other major stakeholders for a two-day event in Washington D.C. During this patient-centric forum, attendees will be able to share important perspectives on access to medications, better therapies, and the need for more research to make “one transplant for life” a reality. These discussions will have an advocacy focus and will be strengthened by the participation of national legislators.

A unified voice

The summit has also been planned with the goals of encouraging networking and providing education. It is anticipated that the summit will result in patient driven partnerships with stakeholders in the transplant community. The goal is to create a unified patient voice for organ transplantation.

The transplant community is diverse but powerful. It is our hope that this summit will bring together patients in a meaningful way to support a singular voice to advocate for the research and regulatory changes required for them to live without the fear of organ rejection.

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