I 113th CONGRESS 2d Session H. R. 5218 IN THE HOUSE OF REPRESENTATIVES July 28, 2014 Mr. Clay introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To amend the Public Health Service Act to establish a National Organ and Tissue Donor Registry Resource Center, to authorize grants for State organ and tissue donor registries, and for other purposes.

1. Short title This Act may be cited as the Everson Walls and Ron Springs Gift for Life Act of 2014 . 2. National Organ and Tissue Donor Registry Resource Center Part H of title III of the Public Health Service Act ( 42 U.S.C. 273 et seq. ) is amended by inserting after section 371A the following: 371B. National Organ and Tissue Donor Registry Resource Center (a) In general The Secretary, acting through the Administrator of the Health Resources and Services Administration, shall establish a National Organ and Tissue Donor Registry Resource Center (referred to in this section as the Center ). (b) Duties The Center shall— (1) advance the development, expansion, and evaluation of State organ and tissue donor registries; (2) facilitate timely access to and exchange of accurate donor information between State registries 7 days each week on a 24-hour basis; (3) ensure that State organ and tissue donor registries funded through section 371C are in compliance with the requirements described in such section, including the operating standards described in section 371C(d); (4) provide technical assistance to States for the establishment and operation of State organ and tissue registries; and (5) maintain a registry information clearinghouse, including by maintaining a Web site, to collect, synthesize, and disseminate best practices information about organ and tissue donor registries. (c) Authorization of appropriations There is authorized to be appropriated to carry out this section $5,000,000 for each of fiscal years 2015 through 2019. . 3. Grants for State organ and tissue donor registries Part H of title III of the Public Health Service Act ( 42 U.S.C. 273 et seq. ) is amended by inserting after section 371B, as inserted by section 2, the following: 371C. Grants for State organ and tissue donor registries (a) Program authorized The Secretary shall award grants or cooperative agreements to eligible entities to support the development, enhancement, expansion, and evaluation of State organ and tissue donor registries. (b) Definition In this section, the term eligible entity means a State agency or a State contracted entity. (c) Use of funds As a condition on the receipt of a grant or cooperative agreement under this section, an eligible entity shall agree to use the grant or cooperative agreement— (1) to develop, expand, or maintain a State organ and tissue donor registry; and (2) to establish benchmarks for improvement in organ and tissue donation in the State. (d) Operating standards As a condition on the receipt of a grant or cooperative agreement under this section for a State organ and tissue donor registry, an eligible entity shall agree to maintain the registry in accordance with the following: (1) The registry must allow a donor or any other person authorized by the donor to include in the registry a statement or symbol that the donor has made, amended, or revoked an anatomical gift. (2) The registry must be accessible to any qualified organ procurement organization described in section 371(b) to allow the organization to obtain relevant information on the registry to determine, at or near the death of the donor or a prospective donor, whether the donor or prospective donor has made, amended, or revoked an anatomical gift. (3) The registry must be accessible as described in paragraphs (1) and (2) 7 days each week on a 24-hour basis. (4) The registry must ensure that personally identifiable information on the registry about a donor or prospective donor may not be used or disclosed without the express consent of the donor or prospective donor for any purpose other than to determine, at or near the death of the donor or prospective donor, whether the donor or prospective donor has made, amended, or revoked an anatomical gift. (e) Application To seek a grant or cooperative agreement under this section, an entity shall submit an application to the Secretary at such time, in such manner, and containing such information as the Secretary may reasonably require. (f) Report As a condition on the receipt of a grant or cooperative agreement under this section, not later than 180 days after receipt of the grant or cooperative agreement, and every 180 days thereafter (through the date of completion of the activities funded through the grant or cooperative agreement), an eligible entity shall prepare and submit a report to the Secretary that— (1) describes the manner in which such entity has used amounts received through the grant or cooperative agreement; and (2) assesses initiatives that may be replicated in other States. (g) Authorization of appropriations There is authorized to be appropriated to carry out this section $10,000,000 for each of fiscal years 2015 through 2019. . 4. Limitation on liability Part H of title III of the Public Health Service Act ( 42 U.S.C. 273 et seq. ) is amended by inserting after section 371C, as inserted by section 3, the following: 371D. Limitation on liability No person may be held civilly liable by reason of having harvested or taken an individual’s organs or tissues without having obtained valid consent for the harvesting or taking, if— (1) such person has verified that, at the time of the harvesting or taking, the individual is registered as a donor with a State organ and tissue donor registry; and (2) the harvesting or taking is within the scope of the consent given by such individual for purposes of such registration. . 5. Study on feasibility of establishing a living donor database Section 371A of the Public Health Service Act ( 42 U.S.C. 273a ) is amended— (1) by striking The Secretary may establish and inserting (a) In general.— The Secretary may establish ; and (2) by adding at the end the following: (b) Study Not later than 1 year after the date of the enactment of the Everson Walls and Ron Springs Gift for Life Act of 2014, the Comptroller General of the United States shall— (1) 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 for such donors associated with living organ donation; and (2) submit a report to the Congress on the results of such study. .