LEGISLATIVE UPDATE

September 2004

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Legislation related to programs at the National Institutes of Health (NIH)

Fiscal year 2005 appropriations

Latest action: The House Committee on Appropriations approved its version of the appropriations bill for the Departments of Labor, Health and Human Services, and Education on July 14.
Highlights: If passed by the House and Senate and signed by the President, the bill would provide $2,963,953,000 for the National Heart, Lung, and Blood Institute, an increase of $85,847,000 (3.0 percent) over the 2004 level.

The Senate Committee on Appropriations has not released any information about its version of the bill. Members of both chambers will resume work on appropriations legislation after the House and Senate reconvene on September 7.

Stem Cell Research Enhancement Act

Number: H.R. 4682
Sponsor: Representative Mike Castle (R-DE)
Latest action: Referred to the House Committee on Energy and Commerce on June 24.
Highlights: The bill would permit federal support for research using human embryonic stem cells, regardless of the date of derivation, as long as

• The cell lines were derived from embryos created for fertility treatments.
• The embryos are not needed for fertility treatments and would otherwise be discarded.
• The individuals seeking fertility treatments donated the embryos for research with written informed consent and without receiving any financial or other inducements to make the donation.

Stem Cell Discovery through Diversity Act

Number: H.R. 4812
Sponsor: Representative Peter Deutsch (D-FL)
Latest action: Referred to House Committee on Energy and Commerce on July 12.
Highlights: The bill would

• Require the NIH to conduct and support human embryonic stem cell research in accordance with guidelines issued by the NIH during the prior Administration.
• Require the Director of NIH to ensure the donation of cells from a "significant number of individuals who are members of racial or ethnic minority groups"
• Establish the Ronald Reagan Office of Human Stem Cell Research to coordinate NIH research that uses human pluripotent stem cells.

Patient's Bill of Rights Act of 2004

Number: H.R. 4628
Sponsor: Representative John Dingell (D-MI)
Latest action: Referred to the House Committees on Energy and Commerce, Education and the Workforce, and Ways and Means on June 21.
Highlights: The bill, which is intended to protect consumers in managed care plans and other health coverage, includes provisions that would require health care insurers to

• Allow enrollees to participate in clinical trials funded by the NIH, the Department of Defense, or the Department of Veterans Affairs or approved by the Food and Drug Administration.
• Pay for routine patient costs provided in connection with a trial.

A companion measure, S. 1945, was introduced by Senator John McCain (R-AZ) on November 24, 2003, and referred to the Senate Health, Education, Labor, and Pensions (HELP) Committee.

Clinical Research Act of 2004

Number: H.R. 4779
Sponsor: Representative Dave Weldon (R-FL)
Latest action: Referred to the House Committee on Energy and Commerce on July 8.
Highlights: The bill would

• Authorize the NIH to award grants to defray the costs of complying with Federal requirements for the protection of human research subjects (e.g., Pubic Law 104-191 - the Health Insurance Portability and Accountability Act of 1996) and maintaining institutional review boards.
• Allow for clinical research infrastructure grants to support a variety of activities such as updating information technology systems and creating programs that would increase the supply of qualified clinical investigators.
• Authorize grants for demonstration programs of how academic research centers can collaborate with the practicing health care community in clinical research.

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Legislation related to cardiovascular, pulmonary, or hematologic diseases

Stroke Treatment and Ongoing Prevention Act

Number: H.R. 3658
Sponsor: Representative Lois Capps (D CA)
Latest action: Referred to the Senate HELP Committee after passage by the House on June 14.
Highlights: The bill would

• Allow the Health Resources and Services Agency (HRSA) to award grants for training medical personnel, including emergency medical professionals, about treatments for people who experience stroke.
• Expand the current duties of the Centers for Disease Control and Prevention (CDC) to include establishing and maintaining a national registry and clearinghouse to coordinate analysis of stroke treatments and developing and running a public education campaign about stroke. The legislation includes a stipulation that the campaign should not overlap with ongoing Federal activities (e.g., the National Institute of Neurological Disorders and Stroke "Know Stroke" campaign).

Health Care Modernization, Cost Reduction, and Quality Improvement Act

• The Department of Health and Human Services (DHHS), through the CDC and in collaboration with other Departments, to establish activities in schools, worksites, and communities to encourage healthy dietary choices (such as fruits and vegetables, and foods that are low in fat, sugar, and salt) and to increase physical activity.
• The DHHS to award grants for programs addressing the prevention and diagnosis of arthritis, diabetes, and stroke.

Asthmatic Schoolchildren's Treatment and Health Management Act of 2004

Number: H.R. 2023
Sponsor: Representative Cliff Stearns (R-FL)
Latest action: Reported from the Committees on Energy and Commerce on July 14.
Highlights: The bill would require the Secretary, DHHS, when making grants to states for asthma-related activities, to give preference to states that require schools to allow students to self-administer medication to treat their asthma or anaphylaxis.

Sickle Cell Treatment Act of 2003

Number: S. 874
Sponsor: Senator James Talent (R-MO)
Latest action: Passed in the Senate as an amendment to S. 1637, the Jumpstart Our Business Strength (JOBS) Act, on May 11.
Highlights: The bill would amend title XIX of the Social Security Act to include, as medical assistance under the Medicaid program, primary and secondary preventative medical strategies for children and adults who have sickle cell disease.

The House version of the JOBS Act, called the American Jobs Creation Act of 2004 (H.R. 4520), passed in the House on June 17. In addition to having a different title and proposing slightly different changes to the Internal Revenue Code of 1986, H.R. 4520 did not include the Sickle Cell Treatment Act of 2003. The differences between the House and Senate versions need to be reconciled by a conference committee.

Content last modified: 8/31/04
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