109th Congress

Children's Health

S. 174/H.R. 963, S. 579, S. 609/H.R. 1353, S. 707/H.R. 2861, S. 1902/H.R. 4124

Background

The mission of the National Institute of Child Health and Human Development (NICHD) encompasses all stages of human development from preconception to adulthood and addresses topics related to the health of children, adults, families, communities, and populations. In the four decades since NICHD was created, the Nation has made remarkable strides in addressing some of the most challenging health issues facing children. Since the inception of the Institute, the following advances have been made, based in large part on research supported by NICHD: 1) the incidence of sudden infant death syndrome has decreased by nearly 50 percent, 2) the incidence of Haemophilus influenza B, once one of the leading causes of mental retardation, has dropped from more than 40 cases per 100,000 children under the age of 5 in 1988 to fewer than 5 cases per 100,000 children under the age of 5 today, and 3) phenylketonuria has been successfully eliminated as a factor in cognitive development through newborn screening and dietary therapy.

Members of Congress have consistently expressed interest in children’s health research and are motivated by constituents, disease advocacy groups, and their own family history. One of the most significant pieces of legislation in this area is P.L. 106-310, the Children’s Health Act of 2000, which was passed by the 106th Congress. The Act authorized the National Institutes of Health (NIH) Pediatric Research Initiative, as well as research activities on fragile X syndrome, autism, and juvenile arthritis. It also launched the development of the National Children’s Study, a longitudinal study that will observe approximately 100,000 children in the United States from before birth through their 21st birthday. The 107th Congress passed two significant pieces of legislation related to children’s health: P.L. 107-110, the Best Pharmaceuticals for Children Act, which ensures clinical testing for drugs used in a pediatric population, and P.L. 107-84, the MD CARE Act, which enhances research activities related to muscular dystrophy. Although the 108th Congress failed to pass any significant legislation associated with children’s health research, measures were introduced regarding autism, the effects of media on children, safe motherhood, and premature labor.

At the beginning of the 109th Congress, several Members introduced bills intended to expand children’s health research, including several bills that had been introduced but not acted on during prior Congresses. The measures would have addressed palliative care, the impact of electronic media on child and adolescent health, autism, and asthma. Members of Congress also pursued prenatal health issues through legislation supporting parents who receive a prenatal diagnosis of birth defects and enhancing research on both preterm labor and birth. During the closing hours of the 109th Congress, S. 707, a bill to address prematurity and preterm labor, was passed by both the House and the Senate. In deference to a view articulated by the Chair of the House Energy and Commerce Committee, Representative Joe Barton (R-TX), that Congress should not direct NIH funding by passing disease-specific legislation, S. 707 was passed without any provisions directly related to NIH.

Provisions of the Legislation/Impact on NIH

S. 174/H.R. 963—Children’s Compassionate Care Act of 2005

S. 174 was introduced by Senator Mike DeWine (R-OH) on January 26, 2005, and H.R. 963 was introduced by Representative Deborah Pryce (R-OH) on February 17. Section 105 of the bill would have required NIH to provide translational research grants to fund research in pediatric pain and symptom management. Eligible entities for such grants would have included children’s hospitals, pediatric departments of medical schools, institutions currently participating in NIH’s network of pediatric pharmacological research units, and hospices with pediatric palliative care programs and academic affiliations.

S. 579—Children and Media Research Advancement (CAMRA) Act

S. 579 was introduced by Senator Joseph I. Lieberman (D-CT) on March 9, 2005. Section 3 of the bill would have required the Director of NICHD to contract with the Institute of Medicine (IOM) to review current research regarding the impact of electronic media on child and adolescent development and establish related research priorities. The bill would have also required the Director of NICHD to fund additional research on the impact of electronic media on children’s health, consistent with priorities articulated by IOM.

S. 609/H.R. 1353—Prenatally Diagnosed Condition Awareness Act

S. 609 was introduced by Senator Sam Brownback (R-KS) on March 11, 2005, and H.R. 1353 was introduced by Representative F. James Sensenbrenner, Jr. (R-WI) on March 16. Section 3 of the bill would have required NIH, in conjunction with the Health Resources and Services Administration and Centers for Disease Control and Prevention (CDC), to award grants or contracts to collect and synthesize current scientific information relating to Down syndrome and other prenatally diagnosed conditions and to disseminate these data to parents receiving such a diagnosis through prenatal genetic testing.

S. 707/H.R. 2861—Prematurity Research Expansion and Education for Mothers who deliver Infants Early (PREEMIE) Act

S. 707 was introduced by Senator Lamar Alexander (R-TN) on April 5, 2005. Section 3 of the bill would have required NIH to “expand, intensify, and coordinate” NIH activities regarding research on preterm labor and delivery, infant mortality, and treatment of preterm and low birth weight infants. The bill would have codified the Maternal-Fetal Medicine Units Network and Neonatal Research Units Network. It would have also required CDC, in conjunction with NIH, to contract with IOM to conduct a comprehensive study to define and address the health and economic consequences of preterm birth. In addition, the bill would have required NICHD to undertake a national longitudinal study of environmental influences on children’s health and development to consider the impact of assisted reproductive technologies. A companion bill, H.R. 2861, was introduced by Representative Fred Upton (R-MI) on June 9.

S. 1902/H.R. 4124—Children and Media Research Advancement (CAMRA) Act

S. 1902 was introduced by Senator Lieberman on October 20, 2005, and H.R. 4124 was introduced by Representative Edward J. Markey (D-MA) on October 24. The bills were largely similar to each other and to S. 579. The principal difference between these bills and S. 579 was that S. 1902 and H.R. 4124 would have changed the locus of responsibility from NIH to CDC. NICHD would not have had any direct responsibilities in either S. 1902 or H.R. 4124.

Status and Outlook

S. 174 was introduced by Senator DeWine on January 26, 2005, and was referred to the Senate Committee on Health, Education, Labor and Pensions (HELP). The bill had three cosponsors upon introduction. No further action occurred on this legislation during the 109th Congress.

H.R. 963 was introduced by Representative Pryce on February 17, 2005, and was referred to the House Energy and Commerce Subcommittee on Health and the House Committee on Ways and Means. On March 3, it was referred to the House Ways and Means Subcommittee on Health. The bill had 3 cosponsors upon introduction, which increased to 14. No further action occurred on this legislation during the 109th Congress.

S. 579 was introduced by Senator Lieberman on March 9, 2005, and was referred to the Senate HELP Committee. It had eight cosponsors upon introduction. No further action occurred on this legislation during the 109th Congress.

S. 609 was introduced by Senator Brownback on March 11, 2005, and was referred to the Senate HELP Committee. It had three cosponsors upon introduction. No further action occurred on this legislation during the 109th Congress.

H.R. 1353 was introduced by Representative Sensenbrenner on March 16, 2005, and was referred to the House Energy and Commerce Subcommittee on Health. It had two cosponsors upon introduction, which increased to eight. No further action occurred on this legislation during the 109th Congress.

S. 707 was introduced by Senator Alexander on April 5, 2005, and was referred to the Senate HELP Committee. It had 1 cosponsor upon introduction and 42 cosponsors when it was passed by the Senate with an amendment by unanimous consent on August 1, 2006. On August 2, the bill was referred to the House Energy and Commerce Subcommittee on Health. On December 9, an amended version of S. 707 was passed by both the House and the Senate. The amended version did not include the provisions described above that would have had a direct impact on NIH. Rather, the bill, as passed, directs CDC to expand its efforts related to prematurity and preterm labor.

H.R. 2861 was introduced by Representative Upton on June 9, 2005, and was referred to the House Committee on Energy and Commerce. The measure had the support of 89 cosponsors; however, further action on the bill was unlikely since in the 109th Congress the focus of the committee’s chair was not on passing disease-specific legislation. No further action occurred on this legislation during the 109th Congress.

S. 1902 was introduced by Senator Lieberman on October 20, 2005, and was referred to the Senate HELP Committee. The bill had four cosponsors upon introduction. On September 13, 2006, S. 1902 was passed by the Senate with an amendment by unanimous consent. On September 14, the bill was referred to the House Committee on Energy and Commerce, and on September 25, it was referred to the House Energy and Commerce Subcommittee on Health. No further action occurred on this legislation during the 109th Congress.

H.R. 4124 was introduced by Representative Markey on October 24, 2005, and was referred to the House Committee on Energy and Commerce. On November 22, the measure was referred to the House Energy and Commerce Subcommittee on Health. No further action occurred on this legislation during the 109th Congress.