CONTENTS Arno, Peter S., Ph.D., health economist, department of epidemiology and social medicine, Montefiore Medical Center, Albert Einstein College of Brown, Lawrence S., Jr., M.D., M.P.H., senior vice president for research and medical affairs, Urban Resource Institute, Addiction Research and Christen, Pat, acting executive director, San Francisco AIDS Foundation.. Craven, Donald E., M.D., director, clinical AIDS programs, Boston City El-Sadr, Wafaa, M.D., chief, infectious disease section, Harlem Hospital Jellinek, Paul S., Ph.D., senior program officer, the Robert Wood Johnson Mason, James O., M.D., Assistant Secretary for Health, Department of Rango, Nicholas, M.D., director, AIDS Institute, New York State Depart- 237 188 5 153 Scott, Cornell, executive director, Hill Health Center, New Haven, CT. Smith, David, M.D., medical director, community oriented primary care, Volberding, Paul A., M.D., associate professor of medicine, University of Weiss, Hon. Ted, a Representative in Congress from the State of New 223 1 Arno, Peter S., Ph.D., health economist, department of epidemiology and social medicine, Montefiore Medical Center, Albert Einstein College of Brown, Lawrence S., Jr., M.D., M.P.H., senior vice president for research and medical affairs, Urban Resource Institute, Addiction Research and Page Letters, statements, etc., submitted for the record by-Continued El-Sadr, Wafaa, M.D., chief, infectious disease section, Harlem Hospital 119-123 Center: Prepared statement. Jellinek, Paul S., Ph.D., senior program officer, the Robert Wood Johnson 93-102 242-261 Mason, James O., M.D., Assistant Secretary for Health, Department of McGuire, Jean F., executive director, AIDS Action Council: Prepared statement. Overrocker, John Page: Prepared statement.... 317 193-197 8-13 Pelosi, Hon. Nancy, a Representative in Congress from the State of 15 157-168 Rango, Nicholas, M.D., director, AIDS Institute, New York State Department of Health: Prepared statement. Scott, Cornell, executive director, Hill Health Center, New Haven, CT: 202-206 Smith, David, M.D., medical director, community oriented primary care, Parkland Memorial Hospital, Dallas, TX: Prepared statement... ...... 128-132 Volberding, Paul A., M.D., associate professor of medicine, University of California, San Francisco, CA, and chief, AIDS program, San Francisco General Hospital: Prepared statement.. 227-231 Young, Dr. Frank, Commissioner, Food and Drug Administration: March 31, 1989, letter to Louis Hays, Acting Administrator, Health Care Financing Administration, re comment on proposed rule in January 30 Federal Register.. ........... APPENDIX 299-301 Material submitted for the hearing record. 321 321-327 September 26, 1989, letter from Kay Holcombe, Associate Director for Public Health Legislation, Office of the Assistant Secretary for Legislation, Department of Health and Human Services, transmitting responses to August 16, 1989, letter. 328-436 September 15, 1989, special communications from Peter S. Arno, Ph.D., entitled "Economic and Policy Implications of Early Intervention in HIV Disease," JAMA.. 437 TREATMENT AND CARE FOR PERSONS WITH HIV INFECTION AND AIDS FRIDAY, JULY 28, 1989 HOUSE OF REPRESENTATIVES, HUMAN RESOURCES AND INTERGOVERNMENTAL RELATIONS SUBCOMMITTEE OF THE COMMITTEE ON GOVERNMENT OPERATIONS, Washington, DC. The subcommittee met, pursuant to notice, at 10:06 a.m., in room 2247, Rayburn House Office Building, Hon. Ted Weiss (chairman of the subcommittee) presiding. Present: Representatives Ted Weiss, 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 next Tuesday the subcommittee will continue its examination of the role of the Federal Government in the AIDS epidemic, focusing on treatment and care issues. It is hard to imagine a disease that has wreaked more havoc in so many lives. The suffering has been unbounded. Thus far, this Nation has not responded to the tragedy of AIDS with sufficiently forceful leadership, aggressive action or adequate resources, but it is not too late for a new administration to repair this dishonorable situation. The epidemic is not abating. Yesterday the number of persons with AIDS reached a total of 100,000, cumulatively. The General Accounting Office projects from 300,000 to 480,000 cases by the end of 1991. Witnesses at previous hearings held by this subcommittee have testified that their capacity to treat and care for the patients now seeking services has reached its limit. With the new hope brought by early intervention, thousands more should have access to treatment. It is well known that cities like New York, San Francisco, and Los Angeles have many persons who are affected, but in other cities, the numbers are also growing fast, in cities such as Charlotte, NC; Grand Rapids, MI; Indianapolis, IN; Charleston, SC; and Fresno, CA. All of these cities saw more than a 30 percent rise in AIDS cases in just the last 5 months. This does not include cases diagnosed and not reported, cases undiagnosed, or other forms of HIV disease such as ARC. We have heard from scientists and physicians treating AIDS that it is becoming a treatable, chronic disease like diabetes. One reason for this is that it is possible to head off the most common killer associated with AIDS, pneumocystis pneumonia, with early preventive treatment. The Public Health Service recently recommended that HIV-infected persons be offered this treatment if their blood tests indicate a progression of their immunodeficiency, but before we become elated over the hope for the longer, healthier life this offers, we must find a way to make it a reality. Much of the care of persons with HIV infection and AIDS is ambulatory, provided at hospital outpatient clinics, community health centers, and other walk-in clinics. The new emphasis on testing and early intervention will multiply the burdens on already overloaded outpatient care facilities. Where will the increasing number of infected Americans turn for care? Who will pay for it? These and other questions will be asked and answered today during the testimony of the experts. Our witnesses are from the front lines of the epidemic. They have been providing health care or have fought their battles planning programs or developing policy. They will tell us of the problems they face and their need for additional resources as they pursue the goal of quality care and treatment for all those who are affected by this unprecedented epidemic. Next Tuesday, representatives of the Department of Health and Human Services will describe their efforts to provide services to persons with HIV and AIDS. The civil servants of the Public Health Service have worked since the earliest days of the epidemic to identify the problem, conduct research to find therapies, and to create programs to prevent the spread of the virus. The absence of aggressive and compassionate leadership at the highest levels of the Government has hampered their efforts. Once again we have called a hearing to examine the essential role that the Federal Government must play in fighting AIDS. At this time, we also want to ask how the Government can provide a way to intervene in this disease at an early stage. Before I welcome our first witness, I would like to indicate some ground rules for the hearing. First, because we are an investigative oversight committee, our witnesses are 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 7 minutes. The written statements, which have been submitted to us, will be entered into the hearing record in their entirety. Let me at this point call on our distinguished ranking member, Mr. Larkin Smith, for his opening statement. Mr. Smith? Mr. LARKIN SMITH. Thank you, Mr. Chairman. Mr. Chairman, there is no doubt that the AIDS epidemic is taking its toll on the American health care system and thousands of individuals afflicted by this deadly disease. During our 2 days of hearings, we will hear telling testimony from people on the front line treating this disease. Today, we will hear stories of tremendous suffering and health care resources being stretched to the absolute limits. We will hear how treating AIDS has diverted personnel and resources from other important health care missions and we will hear frustration in trying to meet the overwhelming needs and demands of AIDS patients. In addition, on Tuesday, we will hear testimony from Federal officials responsible for implementing the national response to AIDS. We will learn about stepped up research efforts to find a cure, increased funding for treatment programs and proposals allowing for the expedited availability of certain drugs which may or may not prolong the lives of AIDS victims. Should the subcommittee remain true to its previous form, the central focus throughout these hearings will be to demonstrate that the Federal Government is not doing enough to combat AIDS. We are likely to hear calls for more funding for treatment, more funding for research, more funding for drugs, and more tolerance. for the sometimes indefensible behavior that can lead to AIDS. Unfortunately, Mr. Chairman, while I recognize the tremendous demands that AIDS is placing on our health care system, Federal funding for AIDS treatment is just half the story. Funding for health care deals solely with the symptoms of the AIDS disease. I am deeply concerned that throwing money at AIDS treatment is just a band-aid approach, that will do little to stem future demands. While I support intensified research, what I also want to know is how people intend to stop the spread of AIDS. What steps are we taking to prevent the primary cause of AIDS transmission, which is individual behavior. The most glaring truth I have come to recognize about AIDS is that it is easily avoidable through modifications of individual behavior. AIDS is primarily transmitted through behavior falling far outside the accepted norms of an overwhelming majority of American citizens. Eighty-eight percent of reported AIDS cases in the United States are related to homosexuality or IV drug use. Married couples practicing heterosexual, monogamous relationships do not get AIDS. Citizens who aren't sharing drug needles do not get AIDS. People who are informed about sexual partners that might transmit AIDS to them are at a much lower risk of getting AIDS. Simply put, if we are serious about fighting AIDS and preventing human suffering, we should aggressively pursue strategies which can positively alter dangerous behavior and prevent the spread of this disease. Several States have adopted and the Federal Government should encourage procedures which allow confidential reporting of those testing positive for HIV infection. We should also support policies which require contacting the sexual partners of those testing positive of the virus. In addition, our schools and public institutions should set a strong moral tone by supporting and espousing traditional family values. Our classrooms should be teaching our kids about self worth and not just safe sex. How many babies must be born with HIV before this becomes standard operating procedure? |