American Pediatric Society & Society for Pediatric Research

Statement for the Record—April 19, 2004

Return to APS/SPR Homepage

 STATEMENT FOR THE RECORD 
OF THE
HOUSE OF REPRESENTATIVES
COMMITTEE ON APPROPRIATIONS

SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION

FISCAL YEAR 2004 FUNDING PRIORITIES

 Submitted on behalf of the Public Policy Council:
American Pediatric Society
Society for Pediatric Research
Association of Medical School Pediatric Department Chairs

 April 29, 2004

The Public Policy Council (PPC) is the public affairs coordinating body for the three major pediatric academic and research societies; the American Pediatric Society, the Association of Medical School Pediatric Department Chairs, and the Society for Pediatric Research.  Together, these organizations represent biomedical, clinical and health sciences pediatric researchers in a variety of settings including medical schools, children's hospitals and other research facilities.  Its members have dual missions: First, they are the scientists - both laboratory and clinical - who make critical discoveries that advance pediatric care to improve the lives of America's children.  Second, and equally as important, they are the faculty and mentors to tomorrow's pediatricians and pediatric researchers so that pediatric health care delivery and the education and training cycle can continue. 

While the PPC is dedicated to promoting pediatric health research and education on many fronts, this statement will focus on two critical issues that most immediately fall under the jurisdiction of this committee - the need for sustainable and appropriate funding for biomedical, behavioral, clinical and health services research, including pediatric research, and the importance of equitable federal investment for the training and education of the nation's future pediatricians and pediatric scientists, particularly in independent children's teaching hospitals.
 

PEDIATRIC RESEARCH

Through federally funded advances in science, infants, children and adolescents are leading healthier lives. As a result of National Institutes of Health (NIH) funded research, deaths from sudden infant death syndrome (SIDS) have been reduced by nearly 50% since 1998 and placing an infant on his/her back has prevented thousands of infant deaths. A study published last year in the Archives of Pediatrics and Adolescent Medicine confirmed earlier studies that placing a baby on its back decreased the risk of SIDS and also reduced the "risk for fever, stuffy nose, and ear infections." Other examples are the development of surfactant for infants with respiratory distress syndrome (RDS) that has saved the lives of thousands of premature babies and the Hemophilus influenza type b (HIB) a vaccine that infants now receive to prevent meningitis one of the leading causes of mental retardation. Clearly, the public's dollars are making a difference on a daily basis.  However, this federal commitment must be sustained if we are to ensure that each generation will be healthier than the last. For example, in 2002, more than 480,000 babies were born prematurely in the United States—an increase of nearly 29 percent since 1981. Preterm labor can happen to any pregnant woman and the causes of nearly half of all preterm births are unknown. Adequate funding is needed for a comprehensive biomedical research program to study preterm delivery etiology, prevention and treatment regimens.

Research holds enormous promise for pediatric health.  Take as an example the growing field of genetics and the potential implications for children. In the few short years since the first human chromosome was decoded, the National Institute of Child Health and Human Development (NICHD) supported research has discovered, among other things, a gene that controls the development of the hippocampus (a part of the brain crucial to learning and memory), as well as the genetic basis for Rett Syndrome (a neurological disorder that primarily affects young girls and creates significant motor and mental impairments in previously healthy-seeming young toddlers). Researchers have also identified a genetic basis for Fragile X syndrome (FXS), the most common genetically inherited form of mental retardation.  As the genetic revolution moves forward, opportunities for further investments in the building blocks of scientific research will continue to blossom.

Potentially even more important, scientific contributions in research have led to practice changes that have directly improved pediatric health outcomes.  For example, researchers at NIH have reported that antiretroviral drugs, in various combinations, markedly reduced deaths in HIV-infected children and adolescents. Previously these drugs had not been extensively tested or used in children, and there was limited data on their safety and efficacy.  Over the three-year study, the drugs reduced the risk of HIV-related death by 67% percent. Additionally, researchers determined that the drugs had similar effects in lowering death rates across racial, ethnic and gender lines and without regard to the stage of HIV infection when the child entered the study.

And yet, there remain many pediatric conditions and diseases that are not preventable or for which treatment may not exist, may only be palliative, or are simply inadequate.  Even relatively common pediatric diseases, such as cystic fibrosis and juvenile onset diabetes - diseases that we do know a great deal about - do not have a cure.  Modern therapy for such diseases is cumbersome, costly and stressful for children and their families.  The NIH has also been instrumental in the research into, understanding of, and advances in autism.  An inter-institute effort involving the National Institute of Child Health and Human Development (NICHD), National Institute on Deafness and Communication Disorders (NIDCD), National Institute of Mental Health (NIMH), and others, has launched aggressive research programs aimed at finding biological causes and predictors of autism, as well as screening, diagnosis and treatment standards.

Whereas it is obvious that we want children to have healthier childhoods, it may be less obvious that improvements in pediatric medicine will have far-reaching implications on the societal and economic costs of disease in adults.  Many diseases usually associated with adulthood actually have their origins in childhood.  Thus, a strengthened investment in pediatric research will benefit adults as well as children.  An illustrative example is childhood obesity.  In the past twenty-five years, the number of school-age children, 6–11 years of age who are overweight more than doubled from 6.5% to 15.3% and for adolescents the increase is even greater from 5.0% to 15.5%. Obesity predisposes children to develop Type II diabetes, insulin resistance, asthma, depression, and cardiovascular disease. African American and Latino children are at even greater risk for obesity. With the growing rate of obesity in children and adolescents, pediatric research is needed to develop effective interventions to prevent morbidity both during childhood and adulthood. If we could effectively reduce the rate of childhood and adolescent obesity through prevention, healthier life styles, and/or treatment, we could substantially reduce the financial burdens of other diseases including coronary heart disease, diabetes and stroke. The combined costs of cardiovascular, endocrine, nutritional and metabolic diseases are estimated to be $232 billion annually, more than 8 times the size of the NIH budget. Imagine the economic and societal savings that are possible if we invest in preventing these diseases during childhood and adolescence.

The pediatric research community applauds the commitment of Congress, to increase the funding for NIH.  We support the recommendation of the Ad Hoc Group for Medical Research Funding to add 10% in FY 2005 to the previous year's budget. We further hope that now that the doubling of the NIH budget has been achieved, the momentum and commitment to support NIH-funded research is appropriately sustained to meet the needs of the ever-evolving and complex health conditions and illnesses of all Americans.

As mentioned above, recent discoveries clearly demonstrate the contributions made by NIH supported research to the health of America's children and families.  These ongoing efforts, as well as new initiatives such as the National Children's Study (NCS) authorized by the bipartisan Children's Health Act of 2000 (P.L. 106-310), must continue to receive sustained and robust federal support. For example, the NCS is a "national longitudinal study of environmental effects (including physical, chemical, biological and psychosocial) on child health and development." The goal of the study is to improve the health and well-being of children. The study will examine these effects on the health and development of more than 100,000 children across the United States, following them from before birth until age 21.To carry out this research, approximately 30–40 National Children's Study Centers will be established across the U.S. Currently there are 22 Working Groups, including working groups on asthma, birth defects, ethics, health disparities, to name just a few. Nearing the completion of the planning phase, the lead federal agencies are the NICHD, the National Institute of Environmental Health Sciences, the Centers for Disease Control and Prevention and the U.S. Environmental Protection Agency. The pediatric research community supports new and an additional $15 million for the completion of the planning phase and to begin the implementation of the NCS. The Public Policy Council also joins with the Friends of NICHD Coalition in requesting $1.3 billion for NICHD in FY 2005 to support its ongoing research initiatives.

This Subcommittee also has helped to make pediatric research a priority at the highest level of the NIH. Also enacted by the Children's Health Act of 2000, the Pediatric Research Initiative's purpose is to provide funds to encourage and support pediatric research, particularly those areas where a special emphasis on pediatrics was needed to assure that research devoted to children's illnesses and conditions was conducted. It is important to sustain and maintain these efforts as well as to take advantage of the tremendous new scientific opportunities in research to treat children's illnesses and conditions and most importantly to elevate their importance in NIH.  The Public Policy Council encourages this Subcommittee to continue to support the Pediatric Research Initiative in the Office of the NIH Director in FY 2005.

In addition, the Public Policy Council supports the investment in health services research. As the lead federal agency on quality of care research, the Agency for Healthcare Research and Quality (AHRQ) provides the scientific basis to improve the quality of care, supports emerging critical issues in health care delivery and addresses the particular needs of priority populations, such as children.  The President's FY 2005 budget proposal freezes funding for AHRQ at its current level of $303 million. Without additional funding AHRQ will have difficulty undertaking the new responsibilities it has been given by Congress and the Administration. For example, no additional funds are provided to conduct comparative efficacy studies of health services and to convene the Citizens' Health Care Working Group as authorized under the Medicare Modernization Act of 2003. Research efforts to enhance the quality, appropriateness, and effectiveness of health care services, including on children and adolescents, would also be impacted without increased funding. We join with other health services research advocates, including the Friends of AHRQ, to request $443 million for AHRQ in FY 2005 to ensure that AHRQ can continue its role in eliminating health disparities, reducing medial errors and improving the quality and effectiveness of health care services to children and adolescents.
 

PEDIATRIC TRAINING AND EDUCATION

The opportunities for improving children's health and health care are growing daily.  However, without the appropriate training, educational programs and mentorship for tomorrow's researchers and clinicians, the advances of today may never be realized.

The pediatric research community urges continued federal support and expansion of NIH efforts to increase the pediatric biomedical, behavioral and health services research pipeline, including such proven programs as targeted training and education opportunities and loan repayment. To ensure that we have adequately trained pediatric researchers in multiple disciplines, we recommend sufficient funding to continue to implement the successful pediatric training grant and pediatric loan repayment programs also enacted in the Children's Health Act of 2000. In addition, we continue to strongly support the clinical research loan repayment program as well.

Equally important to the future of pediatric education and research in this country is the plight of graduate medical education programs in independent children's teaching hospitals.  As you are aware and have supported in the past, independent children's teaching hospitals represent only 3% of all hospitals in the country but play a critical role in delivering health care services to children and in training future pediatricians. Moreover, nearly 30% of the nation's pediatricians, nearly half of the pediatric subspecialists and the majority of certain subspecialists, such as pediatric emergency care physicians, are trained in these settings. With missions dedicated to children's health including indigent care, and to pediatric education and research, these hospitals are at a significant disadvantage in the price-competitive health care market place.  Since it was initiated the Children's Hospital Graduate Medical Education (CHGME) program has been proven to be a sound and successful investment in stabilizing children's hospitals. As a bipartisan Congress has continued to recognize, equitable funding for CHGME is needed to continue the education and research programs in these pediatric settings. We therefore join with the National Association of Children's Hospitals to support the President's FY 2005 recommendation of $303 million for the CHGME program.  The support for independent children's hospitals should not come, however, at the expense of valuable Title VII and VIII programs, including grant support for primary care training.

Finally, the PPC urges continued federal support for the Training Grants in Primary Care Medicine and Dentistry, found in Title VII of the Public Health Service Act.  These grants are the only federal support targeted to the training of primary care professionals and they provide federal support for pediatric residency training, faculty development and post-doctoral programs throughout the country. For example, the Montefiore Medical Center in the South Bronx of New York City has used Title VII funds to support its Residency Training Program in Social Pediatrics (RPSP).  Initiated in response to local needs to prepare physicians for the delivery of care to underserved populations and to practice specifically at Community Health Centers in the inner-city setting, RPSP simultaneously trains physicians in neighborhood health centers and in an academic hospital.  Since its inception, RPSP has graduated over one hundred pediatricians, a large number of whom are women and minority physicians.  Additionally, 79% of all RPSP graduates report that they currently practice in community-oriented primary care settings serving predominately poor and minority inner-city populations.  Another 10% of RPSP graduates report that they are involved in professional activities such as health administration and policy, including directing patient care in community health centers.

Through the enduring support of this Subcommittee, the Title VII program has continued to finance challenging educational opportunities in a variety of settings, to educate and train tomorrow's generalist pediatricians to be culturally competent, to increase development, recruitment, and diversity of faculty, and to meet the health care needs of all communities.

The Public Policy Council remains deeply concerned about the Administration's sharp reduction in proposed funding for health professions programs as outlined in its FY 2005 budget blueprint. We find this to be especially troubling because serious health professions shortages, including pediatrics, continue to exist in rural and underserved areas. As the program outlined above has done in the South Bronx, NY, and countless other areas, these health professions programs were designed to combat this pattern by educating and training providers with the goal that they return to serve in rural and underserved areas. We therefore recommend FY 2005 funding of at least $40 million for General Internal Medicine/General Pediatrics. This represents the first step in a multi-year effort to achieve a funding level of at least $69 million for the General Internal Medicine/General Pediatrics programs. The congressionally established Advisory Committee Training in Primary Care Medicine and Dentistry made this recommendation, which the pediatric community supports, in its November 2001 report to Congress. We also join with the Health Professions and Nursing Education Coalition in supporting an appropriation of at least $550 million in total funding for Titles VII and VIII.
 

CONCLUSION

As pediatricians and researchers, we know first hand that there are many important opportunities for additional pediatric research which promise significant return on investment—not only improved health for our children today but also economic productivity tomorrow—as these children grow into adulthood.  We support the increased investment in research in general and the continued attention to the pediatric research initiative in particular.  Thank you for the opportunity to submit a statement for the record.