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REPORT SHOWS SIGNIFICANT WAITING TIME DISPARITIES
FOR ORGAN TRANSPLANT RECIPIENTS

The Department of Health and Human Services today released a report showing wide disparities in the length of time patients wait for organ transplants in different geographic areas of the United States. Organ allocation policies in effect during the period covered by the report were a significant cause of the disparities, HHS said. And while some changes in these policies have been made, fundamental improvements are still needed to ensure fair treatment for patients.

The 1997 Report of the OPTN: Waiting List Activity and Donor Procurement is the first publication by the organ transplant network to include data on local waiting times. For the largest category of patients, waiting times ranged from 46 days in Iowa to 721 days in western Pennsylvania.

"This report contains some of the strongest evidence yet that our nation�s organ transplantation system needs improvement," HHS Secretary Donna E. Shalala said. "It makes clearer than ever that patients can be disadvantaged by the simple fact of where they live and at what transplant center they are listed.

"Our organ transplant system doesn�t have to work that way, and it shouldn�t," Secretary Shalala said. "Organs donated for transplantation should go to patients on the basis of medical criteria, not geography. Organs should not be denied to patients who need them simply because of arbitrary boundaries that have no medical rationale."

Under HHS regulations published last year, transplant professionals would be required to develop new policies for the transplant network to replace current allocation rules. The new policies would help assure that organs would go to patients with greatest medical need, in accordance with sound medical judgment and effective use of the organs. The current rules often require organs to be used in the local area where they have been procured, instead of being provided to patients with higher medical need, even when such patients may be located in nearby areas. HHS' regulations are set to take effect on Oct. 21, 1999, and the Institute of Medicine has been asked by Congress to review the effect of the regulations.

The current allocation rules are a primary cause of the disparity in waiting times for organs in different parts of the nation, and these rules result in higher-than-necessary number of deaths among those who are waiting for organs, according to HHS' Health Resources and Services Administration. A reformed system that allocated organs on the basis of medical criteria, without arbitrary geographic constraints, would result in more organs for those with greatest medical need, and thus would result in fewer deaths, according to HRSA.

Today's report provides numerous examples of the disparities, measured according to several different categories of patients. In some cases there are significant differences in waiting times even between adjacent areas. For example, the median waiting time for liver transplant patients with similar medical status was 439 days in the Baltimore area, compared with 147 days in nearby Washington, D.C.

For patients with blood type O (representing about 47 percent of all liver transplant patients), the median waiting time was 511 days in New York City, while the median waiting time in bordering northern New Jersey was 56 days. Iowa, with the shortest waiting time among all 66 organ procurement areas at 46 days, compared with neighboring Nebraska at 596 days. (Editors: A map showing type O waiting times is available.)

"An organ that could save a life may be literally stopped at the border, and denied to a patient for non-medical reasons," Secretary Shalala said. "Because of organ allocation rules that put geography ahead of medical need, the more urgent patient in one area may be unable to get a liver for transplantation, even when it comes available in the state or the city next door. That's not in the best interest of patients or those who care for them."

Significant differences also existed in organ recovery activity, with some organ procurement organizations reporting significantly higher rates than others. HHS took action last year to require the nation's hospitals to report virtually all deaths to their local organ procurement organization (OPO), thus providing more opportunity for OPOs to contact the families of potential donors and increase organ donation nationwide. In addition, the pending HHS regulation that would require changes in organ allocation policy would also help provide a fairer system for patients, regardless of differences in OPO recovery rates.

Today�s study includes data on local waiting times across the country for patients placed on a transplant waiting list during two periods of time: 1993 to 1995 for kidneys, and 1994 to 1996 for pancreas, kidney-pancreas, hearts, livers and lungs. The report also documents the number of registered patients transplanted, organ recovery rates from 1994 to 1996 for each OPO, and waiting list activity (additions and removals) for each transplant program nationwide.

Median waiting times differ significantly for all organs depending upon where a patient lives or is listed, as well as patient characteristics such as medical urgency, blood type, age, race and, for kidneys, immune sensitization.

In addition to biologic factors, waiting times appear to be influenced by the demographics of an OPO area, rates of donation, OPO donation request and consent procedures, and transplant center registration and organ acceptance policies.

"This report is a step forward, but it is still not the kind of timely and user-friendly information that patients and their physicians really need," said HRSA Administrator Claude Earl Fox, M.D., M.P.H. "Our goal is for future reports to present more current information in a form that is more understandable for patients, their families and their physicians, including waiting time data for each transplant center."

The report released today totals 2,400 pages in seven separate volumes. It was produced by the United Network for Organ Sharing, a private, gateway.html organization based in Richmond, Va., under contract with HRSA, the HHS agency responsible for administering the organ transplantation system. The pending HHS regulation also requires more current information from the organ transplant network.

Today's report includes an executive summary and six additional organ-specific volumes with tables on OPO-specific median waiting times, number of patients transplanted and donor procurement activity, as well as waiting list activity (with additions and removals) for each transplant center. A graphical analysis is presented on median waiting time data. Because greatly variable circumstances surround waiting times, many OPOs accepted the offer to include a narrative explaining the issues affecting their waiting times and donor procurement activity. Each volume has a user's guide containing frequently asked questions, and background on statistical methods, data collection and analysis and the multiple issues that impact waiting times.

The new report should be used in conjunction with The 1997 Report of Center Specific Graft and Patient Survival Rates, released by HHS in December 1997, which provides historical data on actual and expected survival rates for nearly 100,000 transplants. It showed overall survival rates for transplants at an all-time high, with three-year patient survival rates ranging from 75.9 percent for lung recipients, to 81.2 percent for heart-lung, to more than 90 percent for kidney, liver, heart and pancreas.

The executive summary of The 1997 Report of the OPTN: Waiting List Activity and Donor Procurement can be accessed from UNOS' World Wide Web site at www.unos.org. Organ-specific volumes may be ordered by calling UNOS at 804-330-8541. For specific volumes of the report, purchasers will be required to pay shipping and handling charges.

Other reports, including The 1997 Report of Center Specific Graft and Patient Survival Rates and The Annual Report of the OPTN and Scientific Registry, are also available on the UNOS Web site.

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Note: HHS press releases are available on the World Wide Web at: www.dhhs.gov.