Newborn Screening Saves Lives Act of 2008

Bill: 110-hr-3825
Sponsor: Rep. Roybal-Allard, Lucille [D-CA-34]
Introduced: 2007-10-15 in the House
Policy area: Health
Subjects: Ambulatory care
Authorization
Birth defects
Clinical trials
Communication in medicine
Conferences
Congress
Congressional reporting requirements
Continuing education
Demography
Economics and Public Finance
Education
Emergency Management
Emergency medicine
Environmental Protection
Environmental health
Epidemiology
Families
Federal advisory bodies
Federal aid to Indians
Federal aid to child health services
Federal aid to education
Federal aid to health facilities
Genetic counseling
Government Operations and Politics
Government publicity
Health education
Health planning
Hereditary diseases
Higher education
Hospitals
Indian medical care
Infants
Medical education
Medical laboratories
Medical research
Medical screening
Medical statistics
Medical supplies
Medical technology
Medical tests
Minorities
Minority health
Nonprofit organizations
Nursing education
Preventive medicine
Quality of care
Research grants
Risk
Science, Technology, Communications
Social Welfare
Technological innovations
Technology transfer

Summary:
action_date: 2007-10-15
text: 
Newborn Screening Saves Lives Act of 2007 - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award grants to eligible entities to provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel. 

Adds as a condition for eligibility for grants for screening, counseling, or health care services to newborns and children having, or at risk for, heritable disorders that an entity assure that it has or is implementing guidelines and recommendations of the Advisory Committee on Heritable Disorders in Newborns and Children.

Requires the Advisory Committee on Heritable Disorders in Newborns and Children to: (1) make recommendations that include the heritable disorders for which all newborns should be screened; and (2) develop a model decision-matrix for newborn screening program expansion. 

Requires the Secretary, acting through the Administrator, to: (1) establish a central clearinghouse for information on newborn screening; and (2) award grants for newborn screening educational programs and for a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders.

Requires the Secretary, acting through the Director of Centers for Disease Control and Prevention (CDC), to provide for: (1) quality assurance for screening laboratories; (2) population-based pilot testing for evaluating new screening tools; and (3) a national contingency plan for newborn screening in the event of a public health emergency.

Requires the Secretary, acting through an Interagency Group, to: (1) collect, analyze, and make available data on certain heritable disorders; (2) operate regional centers to conduct applied epidemiological research on interventions to prevent poor health outcomes from such disorders; and (3) research and promote the prevention of poor health outcomes. 

Requires the Secretary to establish the Hunter Kelly Newborn Screening Research Program.

action_date: 2008-04-08
text: 
Newborn Screening Saves Lives Act of 2008 - (Sec. 2) Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award grants to eligible entities to: (1) provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders; (2) provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel; (3) develop and deliver educational programs about newborn screening, counseling, testing, follow-up, treatment, and specialty services to parents, families, and patient advocacy and support groups; and (4) establish, maintain, and operate a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders. 
 
(Sec. 3) Authorizes appropriations for FY2009-FY2013 for grants for demonstration programs to evaluate the effectiveness of screening, counseling, or health care services in reducing the morbidity and mortality caused by heritable disorders in newborns and children.
 
(Sec. 4) Expands the duties of the Advisory Committee on Heritable Disorders in Newborns and Children to include: (1) making recommendations that include the heritable disorders for which all newborns should be screened; (2) developing a model decision-matrix for newborn screening expansion; and (3) considering ways to ensure that all states attain the capacity to screen for the recommended conditions. Sets forth deadlines for the Secretary to make a decision on Advisory Committee recommendations.

Requires the Advisory Committee to continue to operate during the five-year period beginning on the date of enactment of this Act.

(Sec. 5) Requires the Secretary, acting through the Administrator, to establish and maintain a central clearinghouse of current information on newborn screening. Sets forth requirements for such clearinghouse, including: (1) ensuring that the clearinghouse is available on the Internet and is updated at least quarterly; (2) providing links to websites that have expertise in newborn screening; (3) providing information about newborn conditions and screening services available in each state; (4) providing current research on conditions for which newborn screening tests are available; and (5) providing the availability of federal funding for newborn and child screening for heritable disorders.

(Sec. 6) Requires the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), to provide for: (1) quality assurance for screening laboratories; and (2) appropriate quality control and other performance test materials to evaluate the performance of new screening tools.

Requires the Secretary to establish an Interagency Coordinating Committee on Newborn and Child Screening to make recommendations on: (1) programs to collect, analyze, and make available data on certain heritable disorders; and (2) the establishment of regional centers to conduct applied epidemiological research on effective interventions for preventing poor health outcomes resulting from such disorders and to provide information and education to the public on such effective interventions.
(Sec. 7) Requires the Secretary, acting through the Director of CDC, to develop a national contingency plan for newborn screening in the event of a public health emergency. 
Authorizes the Secretary to continue to carry out, coordinate, and expand research in newborn screening (to be known as the Hunter Kelly Newborn Screening Research Program), including: (1) identifying, developing, and testing the most promising new screening technologies; and (2) experimental treatments and disease management strategies for conditions that can be detected through newborn screening for which treatment is not yet available.


Legislative actions:
action_date: 2008-04-08
text: Placed on the Union Calendar, Calendar No. 352.
action_date: 2008-04-08
text: Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 110-570.
action_date: 2008-04-08
text: Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 110-570.
action_date: 2008-03-13
text: Ordered to be Reported (Amended) by Voice Vote.
action_date: 2008-03-13
text: Committee Consideration and Mark-up Session Held.
action_date: 2008-03-11
text: Forwarded by Subcommittee to Full Committee (Amended) by Voice Vote .
action_date: 2008-03-11
text: Subcommittee Consideration and Mark-up Session Held.
action_date: 2007-10-16
text: Referred to the Subcommittee on Health.
action_date: 2007-10-15
text: Referred to the House Committee on Energy and Commerce.
action_date: 2007-10-15
text: Introduced in House
action_date: 2007-10-15
text: Introduced in House