Statement Of
John F. Neylan, M.D.
President
American Society of Transplantation
April 15, 1999

Presented to The House Commerce Subcommittee on Health and the Environment

"Putting Patients First: Increasing Organ Supply for Transplantation"

Mr. Chairman and Members of the Subcommittee, thank you for the opportunity to present testimony on behalf of the American Society of Transplantation (AST).

I am John F. Neylan, M.D., Medical Director of Kidney Transplantation at Emory University and I am President of the American Society of Transplantation (AST). The AST, which has no governmental support, was established in 1982. Our membership, now over 1,400 members strong, is comprised of physicians, surgeons, and scientists actively engaged in the research and practice of transplantation medicine and immunobiology. As such, AST represents the majority of professionals in the field of transplantation in the United States.

Over the last 30 years, transplantation of solid organs has moved from experimental to accepted therapy, with over 20,000 performed in 1998 alone. The success of this procedure has improved greatly over the last few years with almost all solid organ recipients enjoying an 83 - 97% survival rate at one year. Much of this success can be attributed to research in immunosuppression that has been funded by previous federal appropriations. Our better understanding of the body's response to foreign proteins has led to countless other breakthroughs in all areas of medical science. However, this success has brought with it new challenges.

More and more individuals are agreeing to be placed on waiting lists for an organ transplant, and as a result the list has increased in size by 255 percent in the last ten years. It is unfortunate and absolutely unnecessary for those in need of a transplant to go without the "Gift-of-Life." This happens because the supply of available donors is far less that the demand.

I would like to focus my testimony on the most important issue facing the transplant community today, providing transplantable organs for patients in need. Even as we in the transplant community continue the deliberate and at times difficult process of determining the optimal means to allocate a precious though numerically inadequate resource, we must never forget the "crux" of the problem and the real solution........increasing organ donation.

During the next hour, four new names will join those 58,000 individuals in this country waiting for a solid organ transplant. And by the time I get home to Atlanta this evening, 10 individuals will have died because the wait for a transplant was just too long. It is unfortunate and absolutely unnecessary, but the sad fact is that we as a nation are not living up to our potential. Too many families are turning down the option of organ donation.

But, Mr. Chairman, with increased education and improved coordination among the public and private sectors, we can improve donation rates and thus make the gift-of-life a reality for thousands of Americans. The AST believes strongly that federal and state governments, providers, and the patient community need to establish a working compact directed at translating the extremely high public awareness of the "gift-of-life" into a pro-active national effort to increase organ donation. Only by working collectively as the transplant community, with all stakeholders involved, can we successfully address the issue of donation. In addition, the AST strongly supports Congressional reauthorization of the National Organ Transplant Act, which was last reauthorized in 1990, to enhance support for organ donation initiatives.

In my own state of Georgia, there are numerous examples of such good works. Many communities have rallied financial support for someone amongst them in need of a liver transplant. Through these efforts, socioeconomically disadvantaged patients have received the fruits of this life-saving but costly medical miracle. On another level, we have within our state a charitable organization entitled the Carlos and Marguerite Mason Fund which has provided millions of dollars for transplant research, patient support and also organ donation initiatives. An example of the latter is an ongoing minority outreach program which seeks through multiple interventions to enhance donation within the African-American community. And at the state level, Georgia has clearly demonstrated a real and tangible financial support for organ donation by providing a discounted driver's license renewal fee to those who designate their personal support to the cause of organ donation.

Last year, the AST worked closely with Congressman Elijah Cummings to introduce and pass, in the House of Representatives, legislation (H.R. 2943), to increase the amount of leave time available to Federal employees serving as donors. In the past, a lack of leave time has served as a significant impediment and disincentive for individuals willing to share the gift-of-life. The legislation has been reintroduced in the 106th and strongly supported by our Society. AST believes that targeted initiatives such as Congressman Cummings legislation can collectively make a difference, especially those initiatives which support living donation. Indeed, programs that enhance living donation may be among the most immediate, most effective and least expensive activities available to our nation today.

As we all know, organ donation is the real answer to dealing with the dilemma of allocating and distributing an inadequate supply of organs. In addition to our own efforts, and those of the greater transplant community, the AST has consistently urged the Federal Government to continue to take on a greater leadership role in this most important component of the problem through increased research funding, public education and awareness campaigns, and through the implementation of the hospital participation in Medicare and Medicaid regulations requiring notification of potential donors to the organ procurement organizations (OPO).

A year and half ago, the Administration moved forward with a national organ and tissue donation initiative to encourage more families to discuss and understand there loved ones' wishes in regard to donation. Most recently, these activities have included a National Donor Day, and this week, a National Donor Recognition Ceremony to honor those individuals who have given the ultimate gift........the gift-of-life. These important initiatives serve to raise national awareness and educate the public regarding the importance and critical need of their participation in the organ donation process. Such activities are helpful in the reduction of family refusal, which is the number one cause of loss of potential donors today. As a result, the AST has advocated and strongly urged, through testimony before the House and Senate Appropriations Committees, that increased funding be provided to the Division of Transplantation, located in the Health Resources and Services Administration with additional funds for FY 2000. Such funding will help to insure the success of these and other programs federally initiated to enhance donor awareness and improve the public trust in the process.

We all know and understand that increasing our nations supply of organs is the real answer to our current dilemma. You can't put a price tag in human terms of such a gift. Yes, a transplant procedure and follow-up care is expensive. But, relative to the lost productivity, the impact on quality of life, and the cost of living with end stage heart or renal disease, transplantation is very cost effective. Also, it may be the only hope not just for improved survival, but for a full and healthy life for many individuals and their families. Through better education and awareness campaigns, we can win this important battle.

Thank you

 

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