edical advances over the past twodecades have enabled many peo-

ple suffering from life-threatening dis-eases to return to productive lives throughorgan and tissue transplants. Yet one ofthe unrecognized tragedies in the UnitedStates is the number of people who couldbe helped by an organ or tissue transplant,but who never receive one because adonor’s wishes are not honored when heor she dies.

Indiana Rep. Peggy Welch knows first-hand how easy it is for grieving familymembers to override the wishes of a deceased family member. As a regis-tered nurse and a board member of theIndiana Children’s Organ TransplantAssociation, she knows of instances inwhich family members went against adeceased person’s express wishes andrefused to allow donation.

That is why Welch sponsored legisla-tion that requires family members to honor a deceased loved one’s wishesconcerning organ donation. “Living willsand other documents are not worth thepaper they are written on, if doctors and family members can override thedecision,” Welch said. “If you want to bean organ donor, your decision should be honored.”

Nationwide there is a shortage ofdonor organs, which means only a frac-tion of those on the waiting list receive atransplant. “There are more than 77,000men, women and children on the waitinglist for an organ, and there were only23,000 transplants last year,” said LynnWegman, director of the Division of

about 50 percent of families consent todonating a loved one’s organs when giventhe opportunity.

In recent years, states have acceptedthe challenge of increasing awarenessabout donation and improving donationprocedures.

Ohio passed legislation in 2000 that provided funds for a media campaign, reorganized its donation advi-sory committee and created a donor

continued on page 30

Transplantation at the U.S. HealthResources and Services Administration.About 15 people die each day waiting fora donated organ.

Underlying the shortage of donatedorgans and tissues is the disparitybetween how many people say theybelieve in donation but how few trans-plants happen in real-life. Figures from anational Gallup survey indicate that 85percent of Americans support organdonation. Yet studies show that only

healthhealth

28 state government news november/december 2001 the council of state governments 29

MM

Other practices from statesStates are often at the forefront of providing leadership, structure and support for organand tissue donation. Some examples of extraordinary state initiatives include:

Pennsylvania’s Act 102, published in TheCouncil of State Governments’ 1997Suggested State Legislation

Illinois’ “Live and Learn” legislation, passed in1993

Kentucky’s “Trust for Life” legislation, enactedin 1992

Virginia Transplant Council, established 1986

Former Wisconsin Gov. Tommy Thompsonestablished an annual Gift of Life Medal cere-mony for families of organ donors in 2000

Michigan Secretary of State’s Office honoredwith a 2000 CSG Innovations Award for itsOrgan and Tissue Donor Registry EnrollmentProgram.

• Pennsylvania’s Act 102, published in TheCouncil of State Governments’ 1997Suggested State Legislation, requires hospi-tals to routinely notify organ procurementorganizations of all deaths and impendingdeaths so families can be offered the optionof donation. The 1994 law created an OrganDonation Advisory Committee and a dona-tion awareness trust fund financed by vol-untary contributions obtained through statetax returns and applications for driver’slicenses or identification cards. New Jerseyand Delaware passed similar laws in 1995and 1998. Between 1994 and 1999, organdonation in the eastern half ofPennsylvania, southern New Jersey andDelaware rose by 59 percent, compared to a14.6 percent increase nationally.• Illinois’ “Live and Learn” legislation,passed in 1993, raises $2 million annuallyfor organ- and tissue-donor educationthrough vehicle title and transfer fees. Underthe leadership of then-Secretary of State,now Gov. George Ryan, Illinois establisheda statewide advisory panel to coordinateeducation activities, including the “LifeGoes On” multimedia campaign. CurrentIllinois Secretary of State Jesse White hassponsored special conferences to increaseawareness, developed materials to encour-

age donation in minority communities, andestablished a Web site and 24-hour comput-erized donor registry. More than 5 milliondriver’s license and identification holdersare in the state’s donor registry, and organdonation has risen 54 percent since 1993.• Kentucky’s “Trust for Life” legislation,enacted in 1992, allows citizens obtaining adriver’s license to contribute $1 to an organ-donor awareness fund administered by cir-cuit court clerks. By 1999, 50 percent ofKentuckians with a driver’s license hadcontributed, $3 million had been raised, andorgan donation had increased 62 percent.• The Virginia Transplant Council, estab-lished by Virginia’s General Assembly in1986, has contributed to the development oflegislation requiring Virginia hospitals toestablish donation protocols, has developeda statewide educational curriculum forhealth and driver education students, creat-ed promotional materials for Department ofMotor Vehicle branch offices, and hasestablished a donor registry.• Former-Wisconsin Gov. Tommy Thomp-son established an annual Gift of LifeMedal ceremony for families of organdonors held at the Executive Residence;distributed flyers in state employee pay-checks to encourage them to become organ

and tissue donors; signed a law allowing forpaid leave of absence for state employeeswho serve as living organ donors (30 days)or bone marrow donors (5 days); signed alaw requiring driver-education classes tospend at least 30 minutes on organ and tis-sue donation; and proclaimed May 1-5,2000, as Life Planning Week in support ofan initiative by the State Bar of Wisconsin,the State Medical Society of Wisconsin,Wisconsin Health and Hospital Associationand Gundersen Lutheran Medical Center tohelp the public with advance planning,including organ and tissue donation.• The Michigan Secretary of State’s Officewas among eight state programs honoredwith a 2000 CSG Innovations Award for itsOrgan and Tissue Donor RegistryEnrollment Program. The program offers aconvenient method for Michigan residentsto become registered organ donors.Through prepaid postcards and Internetsign-up, Michigan residents can add theirname directly to the Gift of Life’s Organand Tissue Donor Registry. Michigan legis-lation was passed in 1998 that authorizedthe donor registry and the new enrollmentprocess. Since the program began, thenumber of registered organ donors hasincreased by over 1,000 percent.

Giving life

More than 77,000 people are on waiting lists for an organ, but only 23,000 got one last year.

States are looking at creative new ways of encouraging people to donate their organs.

BY TRUDI MATTHEWS

edical advances over the past twodecades have enabled many peo-

ple suffering from life-threatening dis-eases to return to productive lives throughorgan and tissue transplants. Yet one ofthe unrecognized tragedies in the UnitedStates is the number of people who couldbe helped by an organ or tissue transplant,but who never receive one because adonor’s wishes are not honored when heor she dies.

Indiana Rep. Peggy Welch knows first-hand how easy it is for grieving familymembers to override the wishes of a deceased family member. As a regis-tered nurse and a board member of theIndiana Children’s Organ TransplantAssociation, she knows of instances inwhich family members went against adeceased person’s express wishes andrefused to allow donation.

That is why Welch sponsored legisla-tion that requires family members to honor a deceased loved one’s wishesconcerning organ donation. “Living willsand other documents are not worth thepaper they are written on, if doctors and family members can override thedecision,” Welch said. “If you want to bean organ donor, your decision should be honored.”

Nationwide there is a shortage ofdonor organs, which means only a frac-tion of those on the waiting list receive atransplant. “There are more than 77,000men, women and children on the waitinglist for an organ, and there were only23,000 transplants last year,” said LynnWegman, director of the Division of

about 50 percent of families consent todonating a loved one’s organs when giventhe opportunity.

In recent years, states have acceptedthe challenge of increasing awarenessabout donation and improving donationprocedures.

Ohio passed legislation in 2000 that provided funds for a media campaign, reorganized its donation advi-sory committee and created a donor

continued on page 30

Transplantation at the U.S. HealthResources and Services Administration.About 15 people die each day waiting fora donated organ.

Underlying the shortage of donatedorgans and tissues is the disparitybetween how many people say theybelieve in donation but how few trans-plants happen in real-life. Figures from anational Gallup survey indicate that 85percent of Americans support organdonation. Yet studies show that only

healthhealth

28 state government news november/december 2001 the council of state governments 29

MM

Other practices from statesStates are often at the forefront of providing leadership, structure and support for organand tissue donation. Some examples of extraordinary state initiatives include:

Pennsylvania’s Act 102, published in TheCouncil of State Governments’ 1997Suggested State Legislation

Illinois’ “Live and Learn” legislation, passed in1993

Kentucky’s “Trust for Life” legislation, enactedin 1992

Virginia Transplant Council, established 1986

Former Wisconsin Gov. Tommy Thompsonestablished an annual Gift of Life Medal cere-mony for families of organ donors in 2000

Michigan Secretary of State’s Office honoredwith a 2000 CSG Innovations Award for itsOrgan and Tissue Donor Registry EnrollmentProgram.

• Pennsylvania’s Act 102, published in TheCouncil of State Governments’ 1997Suggested State Legislation, requires hospi-tals to routinely notify organ procurementorganizations of all deaths and impendingdeaths so families can be offered the optionof donation. The 1994 law created an OrganDonation Advisory Committee and a dona-tion awareness trust fund financed by vol-untary contributions obtained through statetax returns and applications for driver’slicenses or identification cards. New Jerseyand Delaware passed similar laws in 1995and 1998. Between 1994 and 1999, organdonation in the eastern half ofPennsylvania, southern New Jersey andDelaware rose by 59 percent, compared to a14.6 percent increase nationally.• Illinois’ “Live and Learn” legislation,passed in 1993, raises $2 million annuallyfor organ- and tissue-donor educationthrough vehicle title and transfer fees. Underthe leadership of then-Secretary of State,now Gov. George Ryan, Illinois establisheda statewide advisory panel to coordinateeducation activities, including the “LifeGoes On” multimedia campaign. CurrentIllinois Secretary of State Jesse White hassponsored special conferences to increaseawareness, developed materials to encour-

age donation in minority communities, andestablished a Web site and 24-hour comput-erized donor registry. More than 5 milliondriver’s license and identification holdersare in the state’s donor registry, and organdonation has risen 54 percent since 1993.• Kentucky’s “Trust for Life” legislation,enacted in 1992, allows citizens obtaining adriver’s license to contribute $1 to an organ-donor awareness fund administered by cir-cuit court clerks. By 1999, 50 percent ofKentuckians with a driver’s license hadcontributed, $3 million had been raised, andorgan donation had increased 62 percent.• The Virginia Transplant Council, estab-lished by Virginia’s General Assembly in1986, has contributed to the development oflegislation requiring Virginia hospitals toestablish donation protocols, has developeda statewide educational curriculum forhealth and driver education students, creat-ed promotional materials for Department ofMotor Vehicle branch offices, and hasestablished a donor registry.• Former-Wisconsin Gov. Tommy Thomp-son established an annual Gift of LifeMedal ceremony for families of organdonors held at the Executive Residence;distributed flyers in state employee pay-checks to encourage them to become organ

and tissue donors; signed a law allowing forpaid leave of absence for state employeeswho serve as living organ donors (30 days)or bone marrow donors (5 days); signed alaw requiring driver-education classes tospend at least 30 minutes on organ and tis-sue donation; and proclaimed May 1-5,2000, as Life Planning Week in support ofan initiative by the State Bar of Wisconsin,the State Medical Society of Wisconsin,Wisconsin Health and Hospital Associationand Gundersen Lutheran Medical Center tohelp the public with advance planning,including organ and tissue donation.• The Michigan Secretary of State’s Officewas among eight state programs honoredwith a 2000 CSG Innovations Award for itsOrgan and Tissue Donor RegistryEnrollment Program. The program offers aconvenient method for Michigan residentsto become registered organ donors.Through prepaid postcards and Internetsign-up, Michigan residents can add theirname directly to the Gift of Life’s Organand Tissue Donor Registry. Michigan legis-lation was passed in 1998 that authorizedthe donor registry and the new enrollmentprocess. Since the program began, thenumber of registered organ donors hasincreased by over 1,000 percent.

Giving life

More than 77,000 people are on waiting lists for an organ, but only 23,000 got one last year.

States are looking at creative new ways of encouraging people to donate their organs.

BY TRUDI MATTHEWS

a national forum on the issue. “Almost allstates give residents the option to consentto donation on their driver’s licenses, butmost states do not have access to that

information,” said Weg-man. HRSA is looking at state donor registriesand how they are beingimplemented — whetherthere is online registra-tion and access, how registries across statesmight be linked and howto capture the informationabout donation frommotor-vehicle records.

As director of the Division of Transplanta-tion, Wegman has had a

bird’s-eye view of organ-donation policyat the state level and has seen what works.“Awareness and education is a key part ofencouraging donation,” said Wegman,“People who consider donation and whodiscuss it with their family are more like-ly to become donors.” State leaders canplay a key role in helping to raise aware-ness, educate the public about donationand improve donation rates in their states.

Trudi Matthews is a senior policy analystat CSG.

istries and how they operate, see thereport Analysis of State ActionsRegarding Donor Registries at www.organdonor.gov/aspehealth. html.)

Thirty-nine states haveenacted laws that treat anindication of intent todonate by donor card ordriver’s license as anadvance directive thatrequires no further con-sent. Although this is thecase in most states, hospi-tal personnel usually stillrequest permission fromthe next of kin before pro-ceeding with donation.Since time is of theessence in donation, act-ing quickly upon a decedent’s wishesmight increase donation by reducing thetime spent locating and obtaining consentfrom next of kin. In recent years, somestates, such as Indiana and Ohio, havepassed legislation that strengthened thelanguage regarding intent to donate to doaway with the need to get the approvalfrom the next of kin.

At the federal level, officials are alsoworking to increase awareness of theimportance of donation and to developsound donation strategies. TommyThompson, secretary of the U.S.Department of Health and Human

Services, was a vocal advo-cate of organ and tissuedonation as governor ofWisconsin. In his new role,Thompson has urged moregovernors and states to getinvolved in recognizingdonors and their families. Thompson has also encour-

aged corporations and stategovernments to help educatethe work force about theneed for donation through hisWorkplace Partnerships forLife initiative. He is workingwith Congress to create anational Gift of Life medal to

honor donors and their families. A modeldriver’s education curriculum on dona-tion is in the works as well.

The Health Resources and ServicesAdministration has studied best practicesregarding donor registries and is planning

continued from page 28registry, a computerized record of organdonors available any time to authorizedpersonnel. Ohio’s new legislation alsodesignated donor cards and driver’slicenses as binding legal documents for donation.

Since the legislation was passed,Ohio’s Second Chance Trust FundAdvisory Committee has been busyworking with Department of Health andBureau of Motor Vehicles personnel. Thecommittee oversaw an opinion survey ofOhio residents regarding donation, devel-oped a strategic plan donation in the stateand is currently developing rules for thedonor registry.

“In Ohio’s opinion survey we foundthat nearly 95 percent of respondents said they believed in organ donation and that if a loved one wanted to donate,they would comply with the decision,”said Barb Petering of the OhioDepartment of Health. “Therefore, thedonor registry was an important compo-nent of informing families of their lovedones wishes.”

In addition to efforts in Ohio andIndiana, states have used a number ofother initiatives in recent years to encour-age donation:

At least 16 states have established dona-tion advisory boards or committees,including Colorado, Delaware, Florida,Georgia, Illinois, Iowa,Maryland, Missouri, Mon-tana, New York, Ohio, Okla-homa, Pennsylvania, SouthCarolina, Texas and Virginia.

Twenty-three states haveenacted laws requiring emer-gency personnel to search atthe site of an accident forindication of donation intent.

Fourteen states havepassed legislation that offi-cially created state donor reg-istries. These includeArkansas, Connecticut, Del-aware, Florida, Illinois,Louisiana, Michigan, Mis-souri, New Jersey, New York, Ohio,Pennsylvania, Tennessee and Virginia. Ifa deceased person is a candidate for organor tissue donation, authorized personnelare able to access the donor registry. (For further information on donor reg-

30 state government news november/december 2001

Former Wisconsin Gov. TommyThompson encouraged organdonation.

Michigan’s Donor Re-gistry won a 2000 CSG

ResourcesTo help address the critical shortageof organ donors, CSG has joined withthe U.S. Department of Health andHuman Services, the NationalConference of State Legislatures andother organizations to provide timelyinformation to public officials onorgan and tissue donation. A forth-coming publication on organ dona-tion for state officials called StateStrategies for Organ and TissueDonation: A Resource Guide forPublic Officials brings together whatCSG, HHS and NCSL have learnedabout innovative state approaches toincreasing donation and saving lives.For more information on this publica-tion, please contact Trudi Matthews,senior policy analyst at CSG at (859)244-8157 or tmatthews@csg.org.