Testimony

Statement by
Michelle Synder, Director
Office of Special Programs Health Resources and Services Administration (HRSA)
on
Assessing Initiatives to Increase Organ Donations
before the
Subcommittee on Oversight and Investigations, House Energy and Commerce Committee, U. S. House of Representatives

June 13, 2003

Mr. Chairman and Members of the Subcommittee:

My name is Michelle Snyder. I am the newly appointed Director of the Office of Special Programs within the Health Resources and Services Administration. I would also like to introduce Mr. Remy Aronoff, Deputy Director of the Office of Special Programs, who will assist me in answering any questions that you may have. We are pleased to appear before you today to discuss organ donation and transplantation, a topic that is one of Secretary Thompson's highest priorities. In fact, the Secretary is passionate about increasing organ donation and transplantation-the true gift of life. Thank you for all of your efforts to increase organ donation. We look forward to continuing to work with you on this important issue.

We have seen many recent examples of the selfless giving of individuals from many walks of life in our country. Some of the most selfless and unheralded people are those who sign organ donor cards and share their decision with their families and loved ones, families who decide to donate the organs of a loved one who has just died, and living donors who agree to share a kidney or part of a liver or bone marrow. I am proud that many important efforts in organ donation and transplantation reside in my agency, the Health Resources and Services Administration.

On October 19, 1984, when President Reagan signed into law the National Organ Transplant Act, he said, "I believe that this act strikes a proper balance between private and public sector efforts to promote organ transplantation." Almost 20 years later, we still believe that. HRSA's Division of Transplantation oversees the contract held by UNOS, the United Network for Organ Sharing, that runs the Organ Procurement and Transplantation Network or OPTN. The OPTN, whose members include the professionals involved in the donation and transplantation system, maintains the organ wait list and matches patients to donor organs 24 hours a day, 365 days a year. It is dedicated to increasing the equity, effectiveness and efficiency of organ sharing through our national system of organ allocation and to increasing the supply of donated organs.

In 1992, 14,000 organs were transplanted. Ten years later, in 2002, almost 25,000 organs were transplanted. There has been progress. But at the same time, we are all sadly aware that more needs to be accomplished. At the end of 1992, 27,630 patients were awaiting an organ. Today, over 80,000 people are on the waiting list in need of an organ. Because of this shortage of organs, we estimate that each day 17 people die waiting for an organ. We and our transplant community partners are always seeking ways to improve the process of organ donation and transplantation and reduce this number of needless deaths. I'd like to tell you about some of the positive things that are currently happening.

One initiative that I am especially excited about is something we call the "Workplace Partnership for Life," which is part of Secretary Thompson's Gift of Life Donation Initiative. The Workplace Partnership for Life began about two years ago. The idea is to invite employers and employees through their workplaces to sign up as partners to create a donation friendly workplace. The workplace is a great environment in which to create awareness of the need for donation. We are inviting corporations and unions, small businesses, associations, government agencies, schools, and volunteer organizations to join the campaign. As of May 15th, 7,334 organizations across the country had joined our Workplace Partnership. The organizations represent the diversity of America-from A.G. Edwards and Sons of Virginia to the 7 O'Clock Barbershop, Incorporated, to the National Republican Legislators Association to the National Benevolent and Protective Order of Elks. These groups are educating their members and employees through newsletters, and at health and wellness fairs. Fax cover sheets include organ donation slogans. Posters are displayed by elevators. All in support of organ donation. At the end of 2002, General Motors/UAW and Blue Cross/Blue Shield of Tennessee reported more than 6,000 individuals signed-up to be donors. We estimate that our Workplace Partners at this time can reach 50 million Americans. The Secretary issued a challenge this past April for the Partners, in the coming year, to generate and document at least 1 million new people who have committed to organ donation.

On April 25, Secretary Thompson announced the newest element of his Gift of Life Initiative: A Best Practices Initiative on organ donor consent. Specifically, the Secretary announced our goal of improving donor protocols and donor management to raise the average rate of donation in the nation's 200 largest donor-potential hospitals to 75% from the current rate of 46%. We believe this is possible because some hospitals and Organ Procurement Organizations or OPOs are already exceeding this goal! We have chosen to focus on these largest hospitals because 50 percent of all potential donors are in these largest hospitals. Thus, we have the potential to save or enhance thousands of lives each year by achieving this goal. The major organizations of the donation and transplant community have joined the Secretary in this effort and we are already working together to pursue it.

We are working together to identify the best practices of high performing areas and will then assist other large hospitals and OPOs to systematically replicate these best practices, thereby increasing donation rates in these large donor-potential hospitals. We are using the collaborative method of the Institute for Healthcare Improvement, which has been successfully used to achieve dramatic improvements in hospital efficiency, clinical outcomes, and other activities in hospitals across the country.

Another important part of improving our organ transplantation system is the Secretary's Advisory Committee on Organ Transplantation. There are 34 members on the ACOT, all non-governmental experts and professionals who come from fields such as health care public policy, transplantation medicine and surgery, critical care medicine, other medical specialties, and non-physician transplant professions. They have expertise in areas such as surgery, nursing, epidemiology, immunology, law and bioethics, behavioral sciences, economics, and statistics. The Committee also has representatives of transplant candidates, transplant recipients, organ donors, and family members. It meets twice a year.

The ACOT is charged with grappling with the serious issues that affect both recipients and donors. At last November's meeting the Committee made 18 recommendations to improve our organ transplantation system. Just two weeks ago our Advisory Committee met again here in Washington. When we opened this meeting our first task was to immediately address the Committee's recommendations from the November meeting. It was with a great sense of pride and teamwork that it was announced that Secretary Thompson had agreed in principle with all of the recommendations; in fact, we have already begun implementation of most of those recommendations. Let me highlight some notable examples:

Of special emphasis were issues relating to living donation. One recommendation said that each living donor should have an independent donor advocate to ensure that informed consent standards and ethical principles are applied to the practice of all live organ donor transplantation. The Secretary fully supports this concept.

It was also recommended that the Secretary of HHS, in concert with the Secretary of Education, should recommend to states that organ and tissue donation be included in core curricula of professional schools, including schools of education, schools of medicine, schools of nursing, schools of law, schools of public health, schools of social work and of pharmacy. The Secretary has announced that he is collaborating with the Secretary of Education to develop model curriculum for use in our schools. They will be sending a joint letter to the nation's school systems to encourage them to adopt these modules in their curriculum.

In addition, as part of the Secretary's Education Initiative, Secretary Thompson and Secretary Paige will launch three projects for children and young adults from ages 10 to 22:
(1) "Decision: Donation" is a model donation program for high school students, which will be launched this summer; it focuses on high school students in health education and driver's education classes, includes hard copy, videos, CDs, and will be on-line.
(2) Internet-based learning tool, "Sandrine's Gift," is aimed at both middle and high school students. It's available on an international Internet-based education site, and has the potential to reach children around the world. It includes discussions between students in classrooms and other students who have experienced donation/transplantation themselves or in their families.
(3) The "College Donor Awareness Project" is a "tool kit" for college students to use to conduct campaigns and presentations in order to explain the critical need for organ, tissue, marrow, and blood donation.

Another Committee recommendation I want to mention concerns the concept of encouraging state legislative practices that promote increased donation and transplantation. We are in the process of identifying model state legislation that promotes donation and transplantation. Examples of productive state legislation include the Michigan and Illinois state-wide registries of donors, Arizona's and Florida's requirement to follow donor wishes for donation, and the Texas and New Jersey laws requiring medical examiners not to withhold life saving organs. We will be raising these actions to the attention of all states as model practices.

I would like to share with you one final aspect of our efforts to increase donation and transplantation. Our Division of Transplantation supports two extramural grant programs designed to increase the number of donors and donor organs available for transplant: Clinical Interventions to Increase Organ Procurement; and Social and Behavioral Interventions to Increase Organ and Tissue Donation. Five grantees are currently testing and evaluating medical techniques at hospitals and other health care facilities capable of increasing the number of possible organ donors and the number of transplantable organs. Eleven grantees are testing the success of outreach efforts and education campaigns in increasing donation rates. The results of some of these grants are already being replicated in some high-performing OPOs and hospitals. We look forward to having the results of other research efforts in and replicating positive results elsewhere in the next 3 to 5 years.

Next year, we celebrate the 50th anniversary of organ transplantation in the United States. The first organ transplant took place in Boston in 1954. A kidney was successfully transplanted from a donor to his identical twin brother. The recipient has since died from causes unrelated to the transplant. His brother, the donor, is still alive. The field of organ transplantation has come a long way from this humble beginning 50 years ago. My hope is that the life-giving endeavor of organ transplantation will prosper even more and that there will come a time when every American in need of a new organ will be provided one. HRSA is committed to this high goal. We will do everything in our power to achieve it. At the recent ACOT meeting, Dr. Phil Berry, who received a new liver 16 years ago, said that the great miracle of transplantation is that you can be so sick and then you can be so well. We want this miracle to be available for each patient who can benefit from a transplant. I look forward to working with you and am happy to answer any questions you have.

Last Revised: June 13, 2003