DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH
Fiscal Year 2002 Budget Request
Provided for the
House and Senate Subcommittees on Labor-HHS-Education Appropriations
Duane Alexander, M.D., Director
National Institute of Child Health and Human Development
Mr. Chairman and Members of the Committee:
I am pleased to present the FY 2002 President's budget request for the National Institute of Child Health and Human Development (NICHD) of $ 1,096,650,000, which reflects an increase of $117,744,000 over the comparable FY 2001 appropriation.
The NIH budget request includes the performance information required by the Government Performance and Results Act (GPRA) Of 1993. Prominent in the performance data is NIH's second annual performance report which compares our FY 2000 results to the goals in our FY 2000 performance plan. As performance trends on research outcomes emerge, the GPRA data will help NIH to identify strategies and objectives to continuously improve its programs.
The mission of the NICHD extends over much of the human life span, from the time a single egg is fertilized and develops into an infant, through the childhood and teenage years, through the young adult and reproductive years, to the health concerns of mature men and women. Our research seeks to answer questions important to everyone: How can parents have children at the times they want them? How can all children be born healthy and mothers avoid the adverse consequences of pregnancy? How can every child reach adulthood free of disease and disability, able to achieve his or her full potential? How can we ease the burden of physical or mental disability to enable all individuals to participate in society as fully as possible?
Since the Institute was established almost 40 years ago, we have made enormous strides in answering these questions and improving the lives of millions of Americans. Through research, we have identified, and eliminated or reduced, many of the causes of mental retardation and as a result, far fewer children and adults have mental disabilities. Through research, we have reduced infant mortality and as a result, many more infants have grown into healthy children and adults. Through research, we have found ways to reduce the transmission of the HIV virus from mother-to-infant and as a result, AIDS in children has markedly declined in this country. And through research, we have demonstrated cost-effective methods of significantly reducing the rate of HIV transmission in developing countries.
We faced formidable scientific challenges in achieving these advances, and we face many challenges today. Yet these challenges are dwarfed by the excitement and hope of soon finding answers to questions we have wondered about for decades.
NEW TECHNOLOGY TO HELP ANSWER A FUNDAMENTAL QUESTION
For many years the answer to a critical scientific question has eluded us: what actually triggers labor in a pregnant woman, at term or at preterm? We know many things that correlate with a woman going into labor, but we have never identified the mechanism that triggers labor. This is an important question. Preterm birth is the leading cause of infant sickness and death among African American babies and the second leading cause of infant death among all races. Despite some wonderful and heartwarming stories that occasionally appear in the media about a premature infant surviving, the long-term outlook faced by very premature infants can be bleak.
Now, for the first time, the human genome project has provided us with the basis for a new technology called microarrays that will allow us to compare the active genes from pregnant women who begin labor prematurely with active genes from those who are not in labor or who deliver their babies after the full nine months. This comparison will help us to identify the gene products that are responsible for initiating labor. Armed with this knowledge, we can learn how to stop, postpone, or, if needed, induce labor. So we have within our reach the hope of addressing the single biggest cause of infant mortality, premature birth. And in the process of answering this important question, we can help eliminate the significant racial disparity in infant mortality.
NEW COLLABORATIONS TO ELIMINATE RACIAL DISPARITIES IN SIDS
As you know, we have had extraordinary success in reducing another cause of infant mortality, Sudden Infant Death Syndrome or SIDS. Since the Institute initiated the Back to Sleep campaign in 1994 to reduce the risk of SIDS, the death rate from SIDS has declined by 40 percent. Yet this decline has been less pronounced among African American infants. In fact, the SIDS rate among African American infants is greater than twice that of white infants. So in collaboration with several national African American organizations, we have initiated an outreach program to reduce the risk of SIDS among African American infants. The organizations, which include the National Black Child Development Institute, the Women of the NAACP, the Alpha Kappa Alpha sorority, and 100 Black Women, among others, are conducting one-to-one training sessions in communities throughout the country to inform African American parents and care givers about back sleeping and other ways to reduce the risks of SIDS.
BEHAVIORAL INTERVENTIONS TO IMPROVE LEARNING
Education is a cornerstone of healthy behavior and reading provides the foundation for education. Children who have difficulty reading are at risk for failure in school, failure at work, and failure at the many activities required to navigate successfully as an adult in our society. NICHD research has demonstrated that using teaching techniques based on phonemic awareness results in most children being able to read by the end of the third grade. As you recall, in collaboration with the Department of Education, as directed by Congress, the Institute convened a National Reading Panel in 1998 to review the evidence from reading research and make recommendations for the most effective methods of teaching children to read. In the largest and most comprehensive evidence-based review of research on how children learn reading ever conducted, the Panel reviewed more than 100,000 experimental and quasi-experimental research studies. The Panel report strongly endorsed the findings and instructional approaches from NICHD's research. We are now collaborating with the National Institute for Literacy to disseminate the Panel's findings to administrators, teachers, and parents.
IMPROVING THE ENVIRONMENT FOR CHILDREN TO GROW
Compared to adults, children are at increased risk from environmental influences. Children are not just small adults. Yet their developing bodies are often exposed to the same level of contaminants as are adults. In some instances, such as ingesting lead from peeling lead-based paints, children may be exposed to greater contaminants than are adults. What happens to a child before birth and early in life will affect the child's subsequent growth, development, and well being.
For this reason, the President's Task Force on Environmental Health and Safety Risks to Children recommended a longitudinal cohort study of environmental impacts on children to identify and quantify the risks that children face. Several Federal agencies, among them, the NICHD, the National Center for Environmental Health of the CDC, and the Environmental Protection Agency, are participating in planning this study. The study will enroll 100,000 children, beginning from before birth, and will gather information on environmental influences and outcomes until the children reach at least age 21. Methodological and pilot studies are planned for FY 2001 to 2003 and the full study will be initiated in 2004. This planning phase will also allow us to answer key questions about the administration of the study. This is the largest such prospective study ever undertaken in this country and we look forward to working with this committee in addressing these exciting and challenging issues.
REDUCING HIV AND AIDS AMONG ADOLESCENTS
The advent of highly active antiretroviral therapy, or HAART, in the mid 1990s dramatically improved the outlook for many people living with HIV infection. But for adolescents infected with HIV, HAART posed a great promise and a greater challenge. The therapy holds the promise of converting HIV infection into a chronic but manageable condition that gives young people time to benefit from emerging therapies. The challenge is that many HIV positive adolescents have little experience with medications, therapeutic regimens, or adherence to therapy. In the absence of a strong social support system, many HIV positive adolescents on HAART do not recognize the importance of taking medications consistently, on time, every day, without fail. The stakes are high because if the drugs are taken for short bursts or erratically over long periods, the probability of drug resistance increases. To help treat HIV positive adolescents and to develop effective prevention strategies, the NICHD established the Adolescent Medicine HIV/AIDS Research Network. By providing training, reinforcement, and a strong social support system, the Network has demonstrated that adolescents can be motivated to remain on an exacting medication regimen. Moreover, the adolescents have been trained in peer counseling techniques and they are providing a strong prevention message to friends and classmates in their social network.
In our autism research, we continue to make important discoveries that help us understand this condition in the hope of finding more effective treatments. Recently researchers funded by NICHD and other NIH Institutes identified a gene that may predispose people to developing autism. The gene, known as HOXA1, plays a crucial role in early brain development. This finding strongly suggests that a gene controlling early brain formation may underlie the development of autism in a large number of cases. Together with other NIH Institutes, we are also actively implementing the provision of the Children's Health Act of 2000 that calls for the establishment of the Centers of Excellence on Autism Program. As an initial step toward establishing the Centers, we are issuing Requests for Applications for Center Development grants which will allow potential Centers of Excellence to marshal the resources necessary to submit strong proposals when we request applications for the actual centers.
Research in women's health continues to be a high priority for the Institute. We are supporting research to develop effective treatments for uterine fibroids, the number one reason for hysterectomies and a leading cause of infertility, particularly among African American women. With the Office of Research on Women's Health, we are conducting research to understand, treat, and reduce conditions such as pelvic organ prolapse and incontinence that can develop as a result of childbirth or the aging process. We are also conducting research to diagnose and treat vulvodynia, a particularly painful condition that affects the reproductive, sexual, and physical health of women. We have also initiated gender specific-research to understand how women's unique reproductive physiology influences the transmission and progression of HIV-1. This research will lay the foundation for new prevention and treatment strategies to reduce AIDS among women. And because some conditions such as uterine fibroids, ectopic pregnancies, and preterm births disproportionately affect African American women, NICHD has helped establish a collaborative partnership between reproductive scientists at minority institutions and NICHD-funded programs. The new Reproductive Science Centers at Minority Institutions are designed to increase the number of minority investigators trained to study reproductive health issues, particularly those relevant to racial and ethnic populations.
In closing Mr. Chairman, I look forward to working with you and the subcommittee and will be happy to provide answers to any questions you have.