Joining Forces With Patients for a New Paradigm in Transplants
Advocacy With long waits and antirejection drug regimens, transplants are currently far from perfect. A new patient-centered summit hopes to lead advocacy for a healthier, more efficient system.
Why Live Kidney Donations Matter
Nearly 100,000 people in the United States are waiting for a kidney transplant, and more than 4,200 people die every year while they wait. Recent data from the Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients show that even as more people need kidney transplants, nowhere near enough kidneys are available. It doesn’t have to be this way.
Unlike other organ transplants, there’s no need to wait for a kidney donor to die. Surgeons can transfer one kidney from a healthy, living individual to someone who is battling kidney failure. Afterward, both donor and recipient can live full, active lives.
Not only do kidneys from living donors function better and last longer than a kidney from a deceased donor (approximately 15-20 years for a living-donor kidney vs. 7-10 years for a deceased-donor kidney), living donors can shorten the time a recipient must wait for a transplant, which is on average three to five years. This means recipients may be healthier and stronger when they receive their kidneys, improving their outcomes.
Although living donors are the best source to increase the pool of available kidneys, unfortunately only one-third of U.S. kidney transplants come from living donors.
We must continue to work hard, donating our time and resources to encourage organ donation and further transplant research. Interested in the living-donation process? Go online and register your decision to be an organ, eye and tissue donor today.
Source: Jon Friedman, M.D., Chief Medical Officer of Population Health Solutions, Optum
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.