New York's Senator
CHARLES E. SCHUMER

FOR IMMEDIATE RELEASE March 19, 2001

AS NY FACES ITS WORST ORGAN SHORTAGE EVER, SCHUMER PUSHES BILL TO FIND DONORS FOR TRANSPLANT PATIENTS

Schumer Legislation Would Create Nationwide Organ Donation Registry To Match Organ Donors and Recipients, Use the Internet to Solicit Every American To Become Organ Donors, Create Grant Program To Help States Establish Registries

Plan Could Lead To Thousands of New Matches and Transplants in New York alone;
75,000 Americans Currently Awaiting Organ Donations

As New York finds itself facing its worst organ shortage in history, US Senator Charles E. Schumer today unveiled a plan to create a national electronic organ registry that would allow Organ Procurement Organizations (OPOs) to instantly locate potential donors and match them with recipients, and make it simple for every American to register to become an organ donor over the Internet. By expediting new transplants, Schumer's plan could save hundreds of lives in Orange County and thousands more throughout the state.

"Thousands of New Yorkers are anxiously awaiting life-saving organ transplants. But because so few states have registries, thousands of potential transplants never take place because the donor isn't identified in time," said Schumer. "My legislation would help patients and donors instantly make a life- saving match by creating one simple database where donors can make themselves known and recipients can find them.

"By simplifying the organ donation process, we can make it easier for people to become donors, which means more organs for the thousands of transplant patients who are waiting for someone to give them the gift of life."

Orange County is part of the OPO for the Greater New York metropolitan area - one of only four OPOs in the entire state - where 6,500 patients are currently looking for organ donors. Statewide, the number of New Yorkers needing transplants has more than tripled since 1991, with 2,390 patients waiting for organs in 1991, 4,118 waiting in 1995, and 7,520 waiting in 2000. Demand for heart, kidney, lung and liver transplants have seen particularly explosive increases - 190 patients were waiting for liver transplants in 1991 compared to 1,982 today.

Nationwide, the waiting list for organ donations has grown from 20,481 in 1990 to over 75,000 people today, and the number of people who died while awaiting organ transplants has tripled from 1,958 in 1990 to 6,125 in 1999. Of the more than 75,000 Americans awaiting organ transplants, over 48,000 are waiting for a kidney. Over 17,000 are waiting for a liver, 4,200 for a heart, and 3,700 for a lung. Currently, when a person is determined to be brain dead, a hospital is required by law to notify the local OPO who then has to sift through thousands of incomplete records to find out if that person is a donor. Without registries, most OPOs do not know whether that person is a donor, forcing patients in need of urgent transplants to wait - often in vain. While the registries hold the key to locating donors, there is no national donor database and only ten states - including New York - have statewide registries.

Schumer's legislation - the Organ and Tissue Donation Enhancement Act of 2001 - would create a federal database administered and updated by the Department of Health and Human Services (HHS) containing the name, address, date of birth, sex, height and eye color of every organ and tissue donor in the nation. The national registry would combine donor information from state registries with information on donors from across the nation who would sign up on a new website established by the legislation. Donors would receive notice of their participation in the registry from HHS within four months of signing up. When an OPO searches for a donor, potential candidates from across the nation could become instantly available.

In order to encourage participation in the registry, special pamphlets promoting organ donation would be mailed to every tax-paying citizen with their IRS tax forms, providing information on organ donation, as well as specific instructions on how to access the website and participate in the registry.

The bill would also help the 40 states that do not have registries establish them by enabling them to apply for up to $300,000 in grants, which could be used for activities like outreach campaigns.

Finally, the legislation would establish a new task force of organ donation experts to study ways to improve the registry, increase donations and promote public awareness. The task force would partner with the Coalition on Donations - a national membership organization with the sole mission of increasing organ and tissue donations - to develop recommendations to increase donations and report to Congress. The bill would then authorize a $15 million, five-year outreach campaign to raise public awareness about the registry.

"While addressing our national and statewide organ shortage will be no easy task, a national registry and outreach campaign are a major step in the right direction," said Schumer. "The more we let people know about the opportunity to donate, the more lives will be saved. It's that simple."

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