Fauci, Anthony S., M.D., Associate Director for AIDS Research, National Institutes of Health, U.S. Department of Health and Human Services.... Gray, Carolyn Doppelt, Commissioner, Administration on Developmental Disabilities, Office of Human Development Services, U.S. Department of Health and Human Services.... Kaufman, Anna Belle, parent, Los Angeles, CA.. Lukomnik, Joanne E., M.D., medical and executive director, Comprehen- sive Family Care Center, Albert Einstein College of Medicine, Bronx, McPherson, Dr. Merle, Office of Maternal and Child Health, U.S. Depart- ment of Health and Human Services.... Matheny, Samuel C., M.D., M.P.H., Associate Administrator for AIDS, Health Resources and Services Administration, U.S. Department of Mitchell, Janet L., M.D., M.P.H., chief of perinatology, Department of Obstetrics and Gynecology, Harlem Hospital Center, Harlem, NY. Novello, Antonia C., M.D., M.P.H., Deputy Director, National Institute of Child Health and Human Development, National Institutes of Health, U.S. Department of Health and Human Services, and Chair, Secre- tary's Work Group on Pediatric HIV Infection and Disease. Rossow, Rachel Wheeler, M.S.N., consultant, Connecticut Department of Schuster, Charles R., Ph.D., Director, National Institute on Drug Abuse, Alcohol, Drug Abuse, and Mental Health Administration, U.S. Depart- ment of Health and Human Services Schwartz, Joel, consultant, the National Network of Runaway and Youth Scott, Gwendolyn B., M.D., associate professor, Division of Pediatric Infec- tious Diseases and Immunology, Department of Pediatrics, University of Miami School of Medicine.... Weiss, Hon. Ted, a Representative in Congress from the State of New York, and chairman, Human Resources and Intergovernmental Rela- Letters, statements, etc., submitted for the record by: Boland, Mary G., R.N., M.S.N., director, AIDS program, Children's Hospi- 36-45 Prepared statement. 158-176 Letters, statements, etc., submitted for the record by-Continued Fauci, Anthony S., M.D., Associate Director for AIDS Research, National Material relating to MAIC.. Page 230 249-322 National Institutes of Health pediatric clinical trials protocol ab- 231-239 Prepared statement. 148-154 Gray, Carolyn Doppelt, Commissioner, Administration on Developmental Disabilities, Office of Human Development Services, U.S. Department of Health and Human Services: 500-540 496 551-571 Guidelines on developmental services for children and adults with Information concerning who initiated meeting in Philadelphia con- 216-224 Public policy affirmations affecting the planning and implementation 541-550 Lukomnik, Joanne E., M.D., medical and executive director, Comprehen- Information concerning how many of the 82 recommendations of the 50-54 473 487 HRSA Pediatric AIDS projects-FY 1989. 474-486 Prepared statement... 181-193 Status of Seventh Report to the President and Congress on Status of 337 McPherson, Dr. Merle, Office of Maternal and Child Health, U.S. Department of Health and Human Services: Information concerning dissemination of safe choices curricula. Mitchell, Janet L., M.D., M.P.H., chief of perinatology, Department of Obstetrics and Gynecology, Harlem Hospital Center, Harlem, NY: Prepared statement... Novello, Antonia C., M.D., M.P.H., Deputy Director, National Institute of Child Health and Human Development, National Institutes of Health, U.S. Department of Health and Human Services, and Chair, Secretary's Work Group on Pediatric HIV Infection and Disease: Prepared statement 469 28-30 122-137 Schuster, Charles R., Ph.D., Director, National Institute on Drug Abuse, NIDA expenditures for research on AIDS prevention and interven- 488 491 198-212 97-104 Number of IV drug users reached in outreach programs. Schwartz, Joel, consultant, the National Network of Runaway and Youth Scott, Gwendolyn B., M.D., associate professor, Division of Pediatric Infec- 18-25 84-93 Zealand, Terrence P., Ed.D., executive director, AIDS Resource Foundation for Children, Newark, NJ: Prepared statement...... 84-93 APPENDIX Material submitted for the hearing record..... 575 CHILDREN AND HIV INFECTION WEDNESDAY, FEBRUARY 22, 1989 HOUSE OF REPRESENTATIVES, INTERGOVERNMENTAL RELATIONS SUBCOMMITTEE OF THE COMMITTEE ON GOVERNMENT OPERATIONS, Washington, DC. The subcommittee met, pursuant to notice, at 9:38 a.m., in room 2154, Rayburn House Office Building, Hon. Ted Weiss (chairman of the subcommittee) presiding. Present: Representatives Ted Weiss, Henry A. Waxman, Nancy Pelosi, Donald M. Payne, Larkin I. Smith, and Peter Smith. Also present: James R. Gottlieb, staff director; Patricia S. Fleming, professional staff member; Pamela H. Welch, clerk; and Wayne Cimons, minority professional staff, Committee on Government Operations. OPENING STATEMENT OF CHAIRMAN WEISS Mr. WEISS. Good morning. The Human Resources and Intergovernmental Relations Subcommittee is now in session. Today and tomorrow, the subcommittee will continue its ongoing examination of the role and responsibility of the Federal Government in the AIDS epidemic, focusing on children with HIV infection. Virtually all pediatric HIV infection is transmitted perinatally from infected mother to child. Transmission through contaminated blood has been nearly eliminated through the screening of donated blood. Adolescents become infected through IV drug use or unsafe sexual behavior. Pediatric AIDS is currently the ninth leading cause of death of children between 1 and 4 years old, and seventh among youths aged 15 to 24. If current figures continue to climb as they have in the past 4 years, AIDS could soon become one of the five major causes of death among young children. Since 1981, more than 1,750 children and adolescents under the age of 20 have been reported to the Centers for Disease Control [CDC] as having AIDS. More than 75 percent are children of color. There are many more who were not reported, or who died before diagnosis was made. The Public Health Service estimates that as many as 20,000 children under 13 will be infected in 2 years. Most babies born with HIV infection die before they reach their third birthday, but teenagers who may become infected at 17, may not know they have the virus until symptoms begin to appear in their twenties. Each situation is devastating. The baby, sick almost from birth, is denied his or her potential for life; the adolescent (1) who may be unwittingly infecting others, will later become sick and most likely die. These are only two of many possible examples of the way AIDS strikes. It respects no one, regardless of race, age, gender, or economic status. But due to demographics and geography, the HIV epidemic in children is concentrated among the most vulnerable people in American society-the people most likely to experience poverty, drug addiction, homelessness, and inadequate health care. When a child has AIDS, you are witnessing not only the possible destruction of an individual life, but also the life of a family. Today, we will hear about the tragedy AIDS has brought to children and their families. Our witnesses are from locations at the center of the epidemic, including Newark, the Bronx, Harlem, and Miami. They will tell you what it's like to be the infantry in the war against pediatric AIDS. They are the experts at providing care and support. We will also hear from two courageous mothers whose lives have been irreversibly altered by the tragedy of AIDS. AIDS is frequently the final assault on a family that is poor and facing numerous other problems. We cannot sit idly by as these children become ill and die, or as they become orphans because their parents become ill and die. Federal intervention is needed, but adequate intervention is yet to come. The last administration had slowly begun to develop programs in response to the overwhelming needs of the affected children and their families. It is my hope that the Bush administration will support sufficient programs and resources to counter a heartbreaking segment of a tragic epidemic. As we examine the Federal response to children with HIV infection, we should note that, since 1983, this subcommittee has held a series of hearings on AIDS-related issues. We have examined the Federal role in responding to the AIDS crisis as it affects health care, testing for the virus, civil rights discrimination, funding, education and prevention, and drug development. Tomorrow, representatives of the Department of Health and Human Services will describe their efforts against pediatric HIV infection. The civil servants of the Public Health Service have worked since the earliest days of the AIDS epidemic to identify the problem and conduct research for therapies, and set up programs to prevent the spread of the virus, but the absence of leadership at the highest levels of Government has hampered their efforts. Once again, we are addressing the critical role the Federal Government must play in fighting AIDS. Before I welcome our first panel of witnesses, let me indicate some ground rules for the hearing. First, because we are an investigative oversight subcommittee, our witnesses are all sworn in. Second, because we have a large number of witnesses and a great many questions, we are going to ask that witnesses keep their oral statements to between 5 and 10 minutes. The written statements will be entered into the hearing record in their entirety. This is the first subcommittee hearing of the new 101st Congress, and I'm delighted to welcome back to the subcommittee the returning members who worked so well and so effectively in the past Congress. Ms. Nancy Pelosi, who is from California, is one of our dis tinguished, most diligent Members. We will have other Members joining us as the hearing goes on. I'm also delighted to welcome two new Members to the committee and to the Congress. On the minority side are Mr. Larkin Smith, who will be serving as our ranking minority member from Mississippi, and Mr. Peter Smith of Vermont. Let me at this point call on Mr. Larkin Smith for any opening comments he may care to make. Mr. LARKIN SMITH. Thank you, Mr. Chairman. Mr. Chairman, as a new Member of Congress, it is an honor and pleasure to serve with you, and I'm looking forward to a productive 101st Congress for the Human Resources Subcommittee. To begin, I want to commend you for calling today's hearing on pediatric AIDS, for the AIDS epidemic has dominated much of the American health debate. The spread of the disease among our children has not received the same level of attention as compared with other, more vocal risk groups. In fact, that children must suffer at all from AIDS is a tragedy in itself. Unfortunately, their misfortune and suffering are not the result of their own behavior or miscalculations, but the regrettable mistakes and miscalculations of others. To put it simply, if anyone can truly be called an innocent victim of AIDS, it is definitely these children. Luckily, to date, we in Mississippi have been fortunate in this regard. Of the more than 85,000 cases of AIDS reported nationwide, only 266 have been reported in Mississippi, and only 5 of these cases were pediatric AIDS. Nevertheless, while our current numbers are low, this does not mean we can afford to ignore the problem. We cannot forget that the costs of AIDS are paid for by all Americans, and we must recognize our responsibility to control these costs by preventing the spread of AIDS, and protecting the lives of every one of its potential, innocent victims. In closing, Mr. Chairman, I am confident that the next 2 days will provide us with a strong foundation of information to begin formulating a serious approach to the problem. I look forward to hearing from our witnesses, and learning their thoughts. Thank you, Mr. Chairman. Mr. WEISS. Thank you very much, Mr. Smith. I mentioned earlier how pleased we are to have distinguished senior Members returning to our subcommittee. One of our most distinguished Members, not only of the subcommittee, but also in Congress, is Mr. Henry Waxman, who chairs the Health Subcommittee of the Energy and Commerce Committee, which is responsible for all the authorizing legislation in the field of health, particularly including AIDS. Mr. Waxman, welcome back to the subcommittee. Mr. WAXMAN. Thank you very much, Mr. Chairman. I am pleased to be on the subcommittee again in this Congress, and to join with you at this hearing. Unfortunately, I'm not going to be able to stay for the whole time of the hearing, but I did want to be here at the beginning. We've worked closely together in the past on the AIDS questions, and there are many questions involved with this terrible, tragic epidemic. |