II
111th CONGRESS
1st Session
S. 1463
IN THE SENATE OF THE UNITED STATES
July 16, 2009
Mr. Burris introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions
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.
Short title
This Act may be cited as the
Everson Walls and Ron Springs Gift for
Life Act of 2009
.
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:
National Organ and Tissue Donor Registry Resource Center
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
).
Duties
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;
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);
provide technical assistance to States for the establishment and operation of State organ and tissue registries; and
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.
Authorization of appropriations
There is authorized to be appropriated to carry out this section $5,000,000 for each of fiscal years 2010 through 2014.
.
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:
Grants for State organ and tissue donor registries
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.
Definition
In this section, the term eligible entity means a State agency or a State contracted entity.
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—
to develop, expand, or maintain a State organ and tissue donor registry; and
to establish benchmarks for improvement in organ and tissue donation in the State.
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:
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.
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.
The registry must be accessible as described in paragraphs (1) and (2) 7 days each week on a 24-hour basis.
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.
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.
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—
describes the manner in which such entity has used amounts received through the grant or cooperative agreement; and
assesses initiatives that may be replicated in other States.
Authorization of appropriations
There is authorized to be appropriated to carry out this section $10,000,000 for each of fiscal years 2010 through 2014.
.
Study on feasibility of establishing a living donor database
Section 371A of the Public Health Service Act (42 U.S.C. 273a) is amended—
by striking
The Secretary may establish
and inserting (a)
In general.—The
Secretary may establish
; and
by adding at the end the following:
Study
Not later than 1 year after the date of the enactment of the Everson Walls and Ron Springs Gift for Life Act of 2009, the Comptroller General of the United States shall—
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
submit a report to the Congress on the results of such study.
.