[Congressional Record Volume 147, Number 85 (Tuesday, June 19, 2001)]
[Senate]
[Pages S6453-S6455]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DURBIN (for himself, Ms. Collins, Mr. Biden, Mrs. Clinton, 
        Mr. Feingold, Mrs. Feinstein, Mr. Johnson, and Mr. Inouye):
  S. 1062. A bill to amend the Public Health Service Act to promote 
organ donation and facilitate interstate linkage and 24-hour access to 
State donor registries, and for other purposes; to the Committee on 
Health, Education, Labor, and Pensions.
  Mr. DURBIN. Mr. President, this year the waiting list for organ 
transplants among Americans stands at more than 75,000. I rise to urge 
all Senators, and all Americans to become organ donors. I rise to 
introduce legislation to make it easier for individuals to donate and 
make it simpler to identify the decedents's donation wishes. I am 
pleased that Senators Collins, Biden, Clinton, Feingold, Feinstein, 
Johnson, and Inouye join me in this effort.
  Access to organ transplantation remains limited by the shortage of 
donated organs. Each day, an average of

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17 people on the waiting list will die. And the waiting list is 
growing. In fact, since 1990 the number of men, women and children 
awaiting life-saving transplants has grown by at least 10 percent easy 
year. We need to move expeditiously to reduce these deaths due to the 
scarcity of willing organ donors. Every 14 minutes we do not act, 
another name is added to the national transplant waiting list.
  Over the last several years, I have worked with many of my colleagues 
on a variety of initiatives to increase organ donation. In 1996, I 
authored legislation to include an organ donation card with every 
Federal income tax refund mailed. More than 70 million donor cards were 
mailed, the largest distribution in history. In 1997, I authored a 
provision in the Labor, Health and Human Services, and Education 
Appropriation bill that authorized a study of hospital best practices 
for increasing organ donation. More recently, I launched a campaign 
known as ``Give Thanks, Give Life'' with the National Football League 
and a large coalition of advocacy organizations to promote family 
discussions over Thanksgiving of family members' desire to become organ 
donors.
  But we need to do more. Major barriers to donation still exist. A 
recent analysis by the Lewin Group, Inc., found low rates of family 
consent to donation. In addition, there are many missed opportunities 
in the process of identifying and referring all potential donors to 
procurement organizations so that families may be approached. A 1996 
study of potential organ donors in hospitals found that in nearly a 
third of all cases, potential donors were not identified or no request 
was made to the family.
  Today I am introducing a comprehensive proposal to address these 
obstacles, including a number of new initiatives. The DONATE Act: 1. 
Establishes a national organ and tissue donor registry resource center 
at the Department of Health and Human Services; 2. Authorizes grants to 
States to support the development, enhancement, expansion and 
evaluation of statewide organ and tissue donor registries; 3. Funds 
additional research to learn more about effective strategies that 
increase donation rates; 4. Provides financial assistance to donors for 
travel and subsistence expenses incurred toward making living donations 
of their organs; 5. Expands Federal efforts to educate the public about 
organ donation and improve outreach activities; 6. Provides grants to 
hospitals and organ procurement organizations to fund organ 
coordinators; and 7. Directs the Secretary of the Treasury to strike a 
bronze medal to commemorate organ donors and their families.
  Organ and tissue donor registries have the potential to greatly 
improve donation rates. Registries provide medical and/or procurement 
personnel easy access to the donation wishes of brain-dead patients. By 
indicating the potential donors wishes to the family, a registry 
documentation can aid in securing next of kin consent. Despite the fact 
that 85 percent of Americans support organ donation for transplants, 
studies indicate that only about 50 percent of families consent to 
donation. Well-designed databases can improve coordination between 
hospitals, physicians, organ procurement organizations and families. 
Registries can also assist in evaluating education and outreach efforts 
by providing information about registrant demographics and audience-
specific effectiveness of awareness campaigns. Yet currently only about 
a dozen States operate mature, centralized organ and tissue donor 
registries.

  I am proud that the State of Illinois was one of the first and is 
currently the largest such system. In Illinois, individuals can 
indicate their willingness to donate by signing their drivers license. 
Drivers' license applicants are also asked if they wish to have their 
name listed on the confidential statewide registry. In addition to 
signing up at a driver services facility, persons can join the registry 
by calling an eight hundred number or electronically via the web. More 
than 3 million Illinoisans have already joined and 100,000 more sign up 
each month. Today, participation in the Illinois Donor Registry is 39 
percent statewide, an increase of 77 percent since 1993. In addition, 
about one fifth of all facilities are reporting participation rates at 
or above 50 percent. Most importantly, organ donation has risen 40 
percent since 1993 and the Regional Organ Bank of Illinois has led the 
nation in the number of organs recovered for transplantation since 
1994.
  But unfortunately Illinois is the exception and not the rule. Most 
States do not have programs and gaps in knowledge exist. In fact, no 
one kept track of which States operate organ donor registries until 
recently. We have little information about what works best when 
developing registries. Guidance for States about the basic components 
of effective systems such as the core functions and content, legal and 
ethical standards, privacy protections and data exchange protocols, is 
scarce.
  And in addition to the fact that most States do not operate 
registries, among those who do, currently no mechanism exists to share 
information between these registries. So if a Illinoisan dies in 
Wisconsin, law enforcement or hospital officials in Wisconsin have no 
easy way of knowing of the victims intent to donate. To be effective, 
registries need to be accessible to the proper authorities around the 
clock without regard for State boundaries. To be effective, registries 
also need to function as an advance directive, ensuring that the donors 
wishes are honored.
  The DONATE Act both funds State registry development and creates the 
technical expertise States need to do so. The bill establishes a 
National Organ and Tissue Donation Resource Center, informed by a task 
force of national experts, to develop registry guidelines for States 
based on best practices. The Center would maintain a donor registry 
clearinghouse, including a web site, to collect, synthesize, and 
distribute information about what works. The proposal also requires 
that a mechanism be established to link State registries and to provide 
around-the-clock access to information. To help ensure that registry 
development is based on evidence of effectiveness and best practices, 
and to help us understand better how to utilize the registry tool to 
increase donations, the DONATE Act asks an advisory task force to 
examine state registries and make recommendations to Congress about the 
states of such systems and ways to develop linkages between state 
registries.
  Public education is equally as important as developing better 
technical tools and programs to increase donation if we are to do a 
better job of matching the number of donors to people in need of a 
transplant. The DONATE Act launches a national effort to raise public 
awareness about the importance of organ donation and funds research to 
find better ways to improve donation rates. The bill authorizes State 
grants for innovative organ donor awareness and outreach initiatives 
and programs aimed at increasing donation.

  A number of additional innovative initiatives are included in this 
bill. The DONATE Act would directly assist living donors, providing 
financial assistance to offset travel, subsistence and other expenses 
incurred toward making living donations of their organs. Similar 
provisions recently cleared the House of Representatives by more than 
400 votes. The DONATE Act includes the House passed bill, with a number 
of improvements. For example, the Act does not restrict such assistance 
to artificial residency requirements and it does not limit assistance 
only to those who donate organs to low income recipients.
  The DONATE Act also provides grants to hospitals and organ 
procurement organizations to fund staff positions for organ 
coordinators. These in-house organ coordinators would be responsible 
for coordinating organ donation and recovery at a hospital or a group 
of hospitals. Research has shown that these types of initiatives can 
have dramatic results. A four-year retrospective study of a large 
public hospital in Houston that implemented a coordinator program 
resulted in a 64 percent increase in the consent rate along with a 94 
percent increase in the number of organ donors.
  Finally, the DONATE Act incorporates a valuable initiative developed 
by Senator Bill Frist to present donors or the family of a donor with a 
Congressional medal recognizing their gift of life. The bronze medal is 
just

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one small, meaningful way we can acknowledge the important act of 
donating to save another person's life.
  A great deal of input from experts, and from my colleagues as well, 
contributed to this legislation. All of these important provisions come 
with the strong support and input of many groups whose mission it is to 
help save lives by increasing organ donation, including the American 
Liver Foundation, the American Society of Transplantation and the 
American Society of Transplant Surgeons. I strongly believe that this 
type of concrete investment and commitment from the Federal government 
is overdue and will make a real difference. And in this case a real 
difference is someone's life.
  I urge my colleagues to join me in this effort to wipe out the 
waiting list for transplants. I urge you all to cosponsor the DONATE 
Act and move expeditiously to pass this legislation.
                                 ______