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The facts about organ transplantation and donation have been fairly well established at this point. Transplantation works. In fact, the United States is a leader in providing this technology to its citizens. The waiting list is large and it is growing. Over 22,000 people wait for organs. Since we have been here this morning, four people have been added to the list. Someone is added every 30 minutes. And 12,000 to 15,000 potential donors exist, but only one-fourth to one-third of these people do, and that is an outcome that is fatal for thousands and, in fact, organ donation has been stalled for 5 years now.
Our organization started a program working with the Kentucky Organ Donor Affiliates, the OPO in Kentucky. Over the last 142 years, organ donation there has increased 30 percent while it has been flat across the country. We are extending this program now into the northern California area that also includes the Reno, NV, area. We are working in the D.C. area, and we are working in the States of Minnesota and North and South Dakota.
As a result of our efforts, I think organ donation is really about people. It is about people who need organs to save or improve their lives. This often affects minorities. Minorities are much more likely, black Americans and Hispanic Americans in particular, to need kidney donation, and they are particularly afflicted by the shortage.
Organ donation is also about the people who pay for organ donation. The end-stage renal disease is a very expensive program, and, in fact, organ transplantation is far more cost effective than is maintaining a patient on dialysis.
Getting beyond these things, which I think are pretty well understood, though, is that organ donation is about the people who are asked to donate a family member's organs and about the people who make the request. I think counter to much of the prevailing thought, we do not believe that public awareness is an issue. Next week is organ donor awareness week. I think we can declare victory today. Over 90 percent of Americans in survey after survey are aware that there is an organ donor shortage. They are aware a transplant works. They would be inclined to donate their own organs. They are supportive of organ donation. Awareness is not the issue, and I think that we have achieved all of the goals on awareness.
I think with the public there are two main objectives. One is translating that awareness into support for organ donation and having families make a decision that they will donate if that ever happens to them. If there is an educational objective and I believe there is—it is with minorities who are less informed about transplantation, though they need it more, and who often have many misperceptions about the donation process.
I think the core of the program and what I would like to leave you with is that we do not have a national organ donor shortage. We have 70 or so regional organ donation shortages, but more to the point, we have a few hundred hospitals, less than 10 percent of the hospitals, in this country that see the patients who become brain dead. And at those hospitals what matters is how families are asked, when families are asked, where families are asked. It is a time when they are grief-stricken. They are distraught. They are angry. And the way they are approached by the medical professionals there, neurosurgeons, intensivists, and critical care nurses, has a major effect on whether they donate. In Kentucky when hospitals followed our guidelines, families were three times more likely to donate.
We think this program can be extended throughout the Nation, and we recommend that $2 million be provided for regional programs that focus on professional education and limited public education.
Thank you for inviting me, and I would be happy to answer questions.
[The statement follows:]
STATEMENT OF MICHAEL EVANISKO Mr. Harkin, distinguished members of the committee, thank you for the opportunity to testify. Þefore you today regarding federal funding to combat a public health crisis which confronts us today—the shortage of donated organs for transplantation.
I am Michael Evanisko, Managing Director of The Partnership for Organ Donation, a Boston-based nonprofit organization dedicated to solving the desperate organ shortage in the United States. Before I begin my statement today, I would like to thank the Members of this Committee for taking the leadership to provide for a federally funded program to coordinate organ donation efforts in this country. There are many individuals alive today who owe you and your colleagues a debt of gratitude. Without the continued support and leadership of the Congress, it will be impossible to realize the full potential of the "gift of life” through organ donation.
BACKGROUND Today, over 22,000 people are on the waiting list for an organ transplant; and the number continues to grow daily. On average, another name is added to the waiting list every thirty minutes. Almost 18,000 people await kidneys and will be on renal dialysis until one becomes available; 1,700 need livers; 1,200 require new hearts; 460 await pancreas transplants; 300 need new lungs; and, more than 200 need combined heart-lung transplants. Thousands of these individuals will never get the organ that they need.
Tens of thousands more would be added to the list were it not for the apparent hopelessness of obtaining an organ. Typically, the individuals on this list are not people who are coming to the end of a long and productive life; instead, they are children, and men and women raising families with the potential to be productive and contributing members of society.
Using conservative estimates, there are 12,000 to 15,000 medically suitable donors available every year. These are individuals who as a result of a tragic and unexpected accident, suffer irreversible brain damage but are otherwise healthy. The number of potential donors is more than adequate to meet the needs of those cur. rently waitlisted if you consider that each potential donor could provide multiple organs. However, the performance of the procurement system falls far short of its needs. In fact, in spite of federal legislation to facilitate organ transplantation, such as the required request law, organ donation has remained relatively constant at roughly 4,000 donors annually for the last several years.
Clearly, the organ shortage is a medical crisis with a cure. Thanks to the Mem. bers of this Committee, your past investment in medical research has enabled tremendous success in the technology of organ transplantation. With improved surgical techniques and the availability of drugs that prevent rejection, the success rate with organ transplantation is nothing short of phenomenal. Where we are stumbling as a nation is in effectively identifying potential donors and in obtaining family consent for donation in hospitals throughout the country.
Two years ago, the Partnership entered into a collaborative relationship with Kentucky Organ Donor Affiliates (KODA), the regional organ procurement organization (OPO) in Kentucky. As a result of our combined efforts over an 18 month period, KODA was able to increase its effectiveness by 30 percent over the previous 18 month period. This occurred at a time when the national donation rate had actually declined. By virtue of this experience, the Partnership believes that the gap between eligible and actual donors can be closed, and donation substantially increased, by implementing an organized, proactive, and systematic program that focuses on three key audiences: health care professionals, organ procurement organizations and the American public.
As a direct result of these preliminary efforts, we have embarked upon a demonstration program within four diverse geographic areas to further test and validate this approach to improving organ donation in the United States. While we continue our work with KODA we have also entered into relationships with the regional OPO's in Northern California, the three state region of North Dakota, South Dakota and Minnesota, and the Washington, D.C. metropolitan area. All consideration was given to the geographic and economic mix of the population in the selection of these sites. Our research and quality assurance effort will evaluate the impact of specific interventions with regard to organ donation in the following context: rural and urban populations; trends in white and minority communities; and, education needs of health professionals and the general public.
HEALTH CARE PROFESSIONALS
The Partnership is collaborating with health experts and organizations in each of the sites to develop professional education programs. These programs ensure that relevant health disciplines agree on their proper roles to achieve increased donation within their hospitals. In addition, continuing education conferences and meetings are being sponsored with nationally recognized experts. The purpose of these meetings is to gain consensus on crucial efforts surrounding organ donation and to develop protocols which can effectively overcome current barriers to organ donation.
The key to our success, we believe, is the fact that a small minority of hospitals treat the vast majority of potential donors. Implementing effective request processes in the hospitals with the greatest donation potential is the area where a significant difference can be made in the short term.
ORGAN PROCUREMENT ORGANIZATIONS We at The Partnership believe that there is not a national organ donation problem. Rather, if there are 70 regional OPO's there are 70 regional donation problems. Any effort to increase organ donation will fail without the full cooperation and participation of the OPO's. It is the individuals within these organizations that are responsible for coordinating all aspects of organ recovery in the nation's hospitals. Our efforts involve on-site collaboration with the OPO's to assist them in maximizing their organizational capabilities; focusing their efforts on the hospitals that have the greatest donation potential; implementing effective donation request processes; and, implementing ongoing quality assurance.
In a recent Gallup Poll, 84 percent of Americans questioned said that they would support organ donation. In addition, 94 percent said that they would be very likely to consent to donation of a loved one's organ if the family member had requested it. However, when faced with the decision, only 25 percent to 30 percent of families consent to donation.
The Partnership’s public education programs are designed to dispel widespread misunderstandings that are barriers to donation, and to help convert positive feelings toward donation into action that will increase donation. The decision to donate ones own organs ie an important element, but not by itself sufficient to ensure that donation will occur. Individuals must also communicate their desires to their next of kin so that in the event they are unable to speak for themselves, their family members will know of, and be able to act upon their wishes.
Nowhere is the need for public education more important that with minority Americans. Black and Hispanic Americans are more likely to need transplants but less likely to donate. Ensuring the equitable allocation of organs to minorities is critical, and the development and implementation of programs that answer minori. ties legitimate concerns about donation and transplantation stands between us and a solution. We are committed to developing model education programs that can be implemented immediately.
RECOMMENDATION The organ shortage is a medical crisis with a cure. In October, 1990, we co-sponsored a consensus conference to bring together experts in the field of organ donation to address the organ shortage issue. Secretary Louis Sullivan was the keynote speaker and as the Secretary urged, "we must maximize any opportunity for organ donation *
an opportunity wasted may literally mean two deaths the second being the person desperately waiting for a transplant.”
The 1992 funding level for the Organ Transplant Program at the Health Re. sources and Services Administration (HRSA) falls far short of what is needed to adequately address this health care crisis. In fact, the budget is $336,000 below the funding level for fiscal year 1991. This cut in funding is in the donor awareness program funded by HRSA—the very vehicle which will be crucial to increasing organ doration in this country.
It is the recommendation of the Partnership for Organ Donation that the Commit. tee provide a total commitment of $2 million programs that can increase organ donation. These funds should be used solely to provide grants for well conceived efforts at the regional level that have the potential to bring quick, effective and innovative solutions to the problem of organ shortage.
It is clear that the other vehicles, such as legislative mandates for required request and drivers license check-offs, have done little to impact the problem. If we are ever to bridge the gap between potential and actual donors, I urge you to adopt a funding level for federally supported organ donation programs which will provide the necessary resources to maximize all opportunities for organ donation.
Thank you for the opportunity to testify before you today. I will be happy to answer any questions that you may have. Thank you.
ORGAN TRANSPLANTS Senator REID. When I served in the House, I served on the Science and Technology Committee. I served on a subcommittee chaired by Al Gore, who was then a member of the House. He conducted extensive hearings regarding organ transplants in which I participated.
As you will recall, there was a little girl at that time who was trying to find a liver, and we followed her. Jamie Fisk I think was her name.
Mr. EVANISKO. Yes.
I understand from your testimony there are 22,000 people as we speak waiting for organ transplants of one kind or another.
You said that The Partnership, working with the Kentucky organ donor affiliates, was able to increase effectiveness by 30 percent, and then you went on later and tried to clarify that, but to me you didn't. Would you tell me what you meant by that? Thirty percent of what?
Mr. EVANISKO. There were 30 percent more donors in the 18 months after we started working with them than there had been in the previous period.
Senator REID. Has that figure been maintained?
Mr. EVANISKO. Yes; it has been maintained, and we expect that it will be
year. Senator REID. Now, tell me what you would do with the $2 million.
Mr. EVANISKO. I think what we would do with the $2 million is develop training programs and educational programs that can be used first in hospitals. Hospitals are vast institutions. They may have thousands of employees, but the people who become brain dead are treated in the intensive care units. And there are literally a few dozen neurosurgeons, intensive care physicians, and critical
care nurses, and training them on how to approach the family, training them not to say things like life support system when you are trying to make a family understand that their loved one is dead and making sure that quality assurance is done is the heart of the heart of the program.
The second major effort is public education for minorities. Minorities make up 33 percent of the wait list. They donate only 8 percent of organs, and their participation is very important because many minorities can only accept same race donors.
If I may make one other comment in response to yours. Charlie Fisk, the father of Jamie Fisk, has remained very involved in transplantation and donations since his daughter received that liver. He is a member of our board of directors and is someone that has been very effective in helping us to pursue this program.
Senator Reid. Express my best wishes to him. I remember him from our extensive hearings.
Mr. EVANISKO. I will do that.
Mr. EVANISKO. Thank you.
MENT ISSUES, THE PEOPLES NATURAL GAS CO., AMERICAN GAS
ASSOCIATION Senator Reid. We would ask now that Keith Dorman of the Peoples Gas of Pittsburgh, American Gas Association come forward.
Is that really the name of your organization? Peoples Gas of
Mr. DORMAN. It is the Peoples Natural Gas Co.
Senator REID. Oh, that makes me feel better. I thought that was all one organization.
I am Keith Dorman. I am manager of Federal Government issues for the Peoples Natural Gas Co., a utility that serves 16 southwestern Pennsylvania counties and over 330 consumers. Peoples is part of the Consolidated Natural Gas System, a company that holds production, transmission, and utility interests in the Northeast and Middle Atlantic States area, and our utility operations encompass service to 1.7 million customers in the Middle Atlantic States area.
I am very pleased to be here today on behalf of the American Gas Association. AGA is a national trade group representing over 250 distribution and pipeline companies in all 50 States.
I am here today on the subject of funding for the Low-Income Home Energy Assistance Program (LIHEAP).
Being from Pittsburgh, I would like to take one moment first to indicate appreciation of the committee for the support for this pro
but also to note with some sadness the passing of John Heinz. While not a member of this committee, he was an advocate on behalf of low-income consumers, particularly low income elderly, and he, along with Representative Silvio Conte from the House who died earlier this year, will be missed a great deal.
Going back to the position of the American Gas Association, AGA is recommending to this committee that LIHEAP be adequately
gram over the