STATEMENT OF ROSEANNE ENGLISH Mr. Chairman and members of the Subcommittee, I am extremely pleased to be here today to discuss the federal government's response to the tragedy of Sudden Infant Death Syndrome. SIDS is the leading cause of death for infants age one month to one year. SIDS accounts for 7,000-8,000 infant deaths each year. This SIDS can strike an infant socio-economic status. In the horrible disease knows no boundaries, from any country, culture, or typical case, an apparently healthy child is put to bed without any indication that something is wrong. Sometime later, the infant is found dead by the unsuspecting parent or caregiver. Prior medical history, a complete postmortem examination, and a thorough examination of the death scene provide no explanation for the cause of death. The National Institute of Child Health and Human Development of the National Institutes of Health is the primary federal agency which provides resources for SIDS research. Although cases of this disease have been noted since biblical times, there is very little that is known about the cause of SIDS, or effective methods of preventing this tragedy. In 1988, at the request of Congress, the NICHD assembled a group of scientists to develop a Five Year Research Plan for Sudden Infant Death Syndrome. This plan details the current state of knowledge about SIDS and articulates future According to the report, the United States is way research needs. behind in studying and preventing the incidence of SIDS. SIDS is a major factor contributing to the shockingly high rate of infant mortality in the United States. The common theme which runs throughout the discussion of SIDS research, is that some abnormality in development makes some infants vulnerable to some internal or external factor which triggers death. To prevent SIDS, we must develop an understanding of the way in which these infants are vulnerable, discover markers and determine the interaction of the vulnerability with stresses. Mr. Chairman, thanks to the efforts of this Committee, and the funding which you have provided to the NICHD, researchers have initiated studies which may help to reveal the mechanisms of SIDS. This year funding will be provided for the establishment of a repository for brain and tissue specimens from infants and children with various neurodevelopmental disorders including SIDS. These specimens will be made available to investigators for research into the etiology, pathology, and pathogenesis of SIDS. In addition to this project, approximately $1 million will go to fund research on fetal and young developing animal models of SIDS. will attempt to reveal environmental and developmental factors which may lead to the sudden death of an infant. obtained from this research is expected to be used for the development of diagnostic and preventive strategies. Another study will focus on the use of apnea monitors in identifying and describing life threatening events. In another study, researchers will examine the correlation between fetal hemoglobin and SIDS with the objective of identifying a screening mechanism for SIDS. These studies The information We are truly excited to see the efforts that are being made in the fight against SIDS however, there is still a great deal more to be done. It would truly be a tragedy if these efforts were halted at the point when So much more can be done. The research capability and technology are available and ready to conduct additional studies that will hasten the progress in reaching the goal of eliminating SIDS. These studies include an examination of the relationship between gastrointestinal infection and SIDS, and a multi-disciplinary project to study fetal and infant sleep and the maturation of life sustaining mechanisms during sleep. These studies will help to identify infants at risk and prevent their death. Mr. Chairman, the Sudden Infant Death Syndrome Alliance is very grateful that your Committee provided the funding last year for the second year of the Five Year Research Plan. Because the President's budget proposal for FY92 does not contain sufficient funds to implement the third year of the Five Year Research Plan, we respectfully urge your subcommittee to once again provide the necessary additional funding. This will allow researchers to move forward on the third year of the research plan, so that we can find out why 7,000-8,000 infants die each year. Now is the time for us to do something about SIDS. into the We are enclosing a status report on the Five Year Research Plan from NICHD, and we request that it be inserted hearing record. Thank you for considering our concerns. be happy to respond to any questions you may have. We would Senator ADAMS. We will do everything we can, and we expect to come out of the subcommittee I know I am in support of it, and the chairman is-funding the third year of the 5-year research programs. We will try to do what the administration has not. I appreciate your testimony. It is a tragic testimony. I am acquainted with a number of people at home who have had the same experience, and we just have to deal with this. Thank you very much for your testimony. STATEMENT OF DR. JOHN DOWNING, JR., HOWARD UNIVERSITY DE- Senator ADAMS. The next witness is Dr. John Downing, Jr., Howard University Department of Pediatrics, the American Pediatric Society. Dr. Downing, welcome to the committee. Dr. DOWNING. Mr. Chairman, I am Dr. John W. Downing, Jr., professor and chairman of the Department of Pediatrics at Howard University here in Washington, DC. Today I appear before this subcommittee to represent the American Pediatric Society, the Society for Pediatric Research, and the Association of Medical School Pediatric Department Chairmen. These organizations represent pediatric researches, the faculty of medical and research facilities, and the leaders of all U.S. medical school pediatric departments. First, I want to thank this subcommittee for its past support for the programs and initiatives at the NIH, the ADAMHA, and the CDC, and especially for those programs focusing on the problems of our infants, children, and adolescents. Financial support from the Federal Government through these Public Health Service Agencies is crucial to our work. As pediatric researchers and pediatricians who provide care, it is difficult to discuss all of the research projects supported through the NIH, but I would just like to highlight a few. The National Institute of Allergy and Infectious Disease is searching for new and improved vaccines for childhood diseases. The National Heart, Lung, and Blood Institute is continuing to fund new projects on cystic fibrosis, of which we have heard something this morning. The NICHD is expanding its research into sudden infant death syndrome following the 5-year plan requested by this Congress. Of course, the NCI continues to work in areas to increase the survival of children who have cancer. Now during the past 2 years this subcommittee has strongly supported the Child Health Research Center's programs which have been established at NICHD. We thank you for that support. By the end of the current fiscal year about 11 or 12 of these will have been funded. We now ask you to provide sufficient funds to expand this program to 15 centers for the next fiscal year. Our organizations join with the ad hoc group for medical research funding in requesting the $9.77 billion for NIH, $1.254 billion for ADAMHA, and $720 million for the NICHD. Now the President's fiscal year 1992 budget does not allocate funding for many of the existing health professions training programs. Instead, it appears to focus these moneys on expanding programs to train minorities. We recognize the dire need for all such programs. One program, however, that the President does seek to expand is the National Health Service Corps and especially the Scholarship and Loan Repayment Program. Our organizations agree that this program should be a priority and funded at the level of $101 million for the scholarship and loan repayment part and $65 million for the field placement. We also recommend $22.5 million for the title 7 primary care training grants in general internal medicine and general pediatrics. The CDC continues its very important work in the prevention of diseases, and we recommend that they be supported for fiscal year 1992 at a level of $2 billion. PREPARED STATEMENT There is a relatively new agency in the Public Health Service, the Agency for Health Care, Policy and Research, which seeks to assess the effectiveness of health services delivery. We urge your support of this agency at a level of $208,174,000 for fiscal year 1992. We thank you for the opportunity to appear. We believe that our recommendations will be of benefit to both research and the graduate medical education of our doctors. STATEMENT OF DR. JOHN DOWNING, JR. Mr. Chairman, I am Dr. John Downing, Professor and Chairman of the Department Pediatrics at Howard University here in Washington, DC. Today I appear before this subcommittee to represent the American Pediatric Society, the Society for Pediatric Research, and the Association of Medical School Pediatric Department Chairmen. These organizations represent pediatric researchers, the faculty of medical and research facilities, and the leaders of all U.S. medical school pediatric departments. First, I want to thank this subcommittee for its past support for the programs and initiatives at the National Institutes of Health (NIH), the Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA), and the Centers for Disease Control (CDC) especially for those programs focusing on the problems of our infants, children, and adolescents in need. You rarely, or perhaps never, see these children, but the members of our three organizations are faced with them and treat them daily. Support financial support -- from the federal government through these public health service agencies is crucial to our work. - RESEARCH AND RESEARCH TRAINING Pediatric research is very exciting today. This is true for the entire spectrum of biomedical and behavioral research from the most basic to the clinical and applied even though it can be years before discoveries and developments are incorporated into routine patient care. For example, infants born with congenital anomalies and children with cancer are living longer, often leading productive lives. We are unlocking the mysteries of the normal and abnormal development of cells, giving us clues to possible interventions which would save more children from suffering. However, as members of this subcommittee know so well, such research and technology development costs money. The majority of our research is supported primarily through investigator-initiated grants of the NIH. The research project grants continue to be the foundation of biomedical and behavioral research. Most of the breakthroughs you read about in the popular press or hear about on television began with investigator-initiated research; sometimes they are the result of one individual on a quest for the answer to a puzzle. And there are still so many puzzles, each one intriguing us, enticing us to devote more time, more resources to finding the answers, for we know that, ultimately, our children will benefit. As pediatric researchers and as pediatricians who provide care, it is difficult to discuss all the research and projects supported through the NIH that we would want to highlight; there are just too many. But I will mention a few examples. The National Institute of Allergy and Infectious Diseases is searching for new and/or improved vaccines for childhood diseases. The National Health, Lung, and Blood Institute is continuing to fund exciting new projects on cystic fibrosis; these are particularly promising since the gene has been discovered. The National Institute of Child Health and Human Development is expanding its research into Sudden Infant Death Syndrome, following a five-year plan requested by this Congress. The National Cancer Institute's research means increased survival for children with cancer and, in many cases, a longer life span than just a few years ago. During the past two years, this subcommittee has strongly supported the Child Health Research Centers program which has been established at the National Institute of Child Health and Human Development. We thank you for this support. This program has been enthusiastically received by our community and the competition has been rigorous. A major goal of this program is to develop a new cadre of rigorously trained pediatric scientists, which is vital to the future of pediatric research. By the end of this fiscal year, 11 or 12 such centers will have been funded. We ask you to provide sufficient funds to expand this program to 15 centers for the next fiscal year. We urge you not to forget the other elements of research support. An important aspect of research is the clinical and applied research which provides the necessary testing and transition before new knowledge is incorporated into routine patient care. NIH and ADAMHA provide crucial funds to ensure the future of research through the training of new investigators. The federal investment also supports the research environment, including equipment and facilities, information management, animal resources, and mechanisms to |