Bill to establish national donor registry resource center introduced in House.

Legislation calling for the establishment of a national organ and tissue donor registry resource center, providing financial support for developing state donor registries, and has been introduced in the US House of Representatives.

The bill also calls for a study to determine the feasibility of developing a living donor database to track the long term health of individuals who become live donors.

H.R. 3635 - the Everson Walls and Ron Springs Gift for Life Act of 2007 - was introduced on September 24 by Rep. William Lacy Clay (D-MO), Chairman of the Subcommittee on Information Policy, Census, and National Archives of the House Committee on Oversight and Government Reform.

The bill was named in recognition of Walls' donating a kidney to Springs earlier this year. As Transplant News went to press Springs was reported to have slipped into a coma and his physicians report he has "no hope" of surviving, according to the Dallas Morning News.

Rep. Clay held a two-hour hearing on organ donation on September 25 to discuss his legislation and examine ongoing efforts to increase public participation in organ donor programs.

"I am convinced that congress must play a vital role in elevating the issue of organ and tissue donation to become a national priority," Clay said in his opening statement.

"By simplifying the organ donation process, your legislation will make it easier for people to become donors," Goran Klintmalm, MD, PhD, President of the American Society of Transplant Surgeons (ASTS), told the subcommittee in written testimony. "Without registries, most OPOs do not know whether a given potential donor has made his or her wishes known, forcing patients in need of urgent transplants to waitoften in vain."

"While the registries hold the key to locating donors, there is no national organ donor database," Klintmalm said. "Establishing a national organ donor registry similar to the national bone marrow registry and an outreach campaign to populate this registry are major steps in the effort to address our national organ shortage."

Jeffrey Crippin, MD, Past President of the American Society of Transplantation (AST), testifying before the subcommittee, pressed for support for legislation that would provide lifetime immunosuppressive drug coverage for transplant recipients.

"Once a recipient receives an organ transplant, the AST and its membership supports measures to ensure that the care for patients is optimized and that the transplanted organ will last as long as possible," Crippin said. "To this end, a most important objective is the support of legislation providing coverage for immunosuppressive medication for the lifetime of the transplanted organ."

Crippin pointed out that Representative Dave Camp (R-MI) introduced The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2007 (H.R. 3282) which has bipartisan support.

"The AST supports initiatives that ensure the lifetime coverage of a transplanted organ regardless of age and ability to pay," Crippin added. "Ultimately, this will lead to improved transplant success rates and the greater ability of transplant recipients to return to a normal life."

Here are some of the provisions in H.R. 3635:

National Organ and Tissue Donor Registry Resource Center

The Center shall

*advance the development, expansion, and evaluation of State organ and tissue donor registries;

*facilitate timely access to and exchange of accurate donor information between State registries 7 days each week on a 24-hour basis;

*provide technical assistance to States for the establishment and operation of State organ and tissue registries; and

*maintain a registry information clearinghouse, including maintaining a Web site to collect, synthesize, and disseminate best practices information about organ and tissue donor registries.

The bill authorizes $5 million annually for each of fiscal years 2008 through 2012 to carry out this provision.

Grants for State Organ and Tissue Donor Registries

*The Secretary [of HHS] shall award grants or cooperative agreements to eligible entities to support the development, enhancement, expansion, and evaluation of State organ and tissue donor registries;

*The registry must be accessible to any qualified organ procurement organization to allow the organization to obtain information on the registry to determine, at or near the death of the donor or a prospective donor, whether he or she has made, amended, or revoked their willingness to donate

The bill authorizes $10 million annually for each of fiscal years 2008 through 2012 for the States grant program.

A Study on Feasibility of Establishing a Living Donor Database

*No later than 1 year after enactment of the bill, the Comptroller of the US shall be required to complete a study to determine the feasibility of establishing a living donor database for the purpose of tracking the short- and long-term health effects on living donors and submit a report on the results to Congress.

Other organ/tissue donation and transplantation- related legislation pending in Congress includes:

*The Living Donor Tax Credit Act of 2007 (H.R.1035) introduced by Representative Joe Wilson (D-SC) which calls for providing tax credits and/or deductions for individuals who are living organ donors.

*The Charlie W. Norwood Living Donation Act (S. 487/H.R. 710) which would amend the National Organ Transplant Act (NOTA) to provide that criminal penalties do not apply to paired donations of human kidneys. The Senate passed the bill in March by unanimous consent. The Senate bill has been referred to the House Committee on Energy and Commerce.

*The Organ Donor Job Security Act 2007 (H.R. 2808) which would amend the Family and Medical Leave Act of 1993 and title 5, United States Code, to allow leave for individuals who provide living organ donations.