Material submitted for the record by: Department of Health and Human Services, four pieces of information on issued guidelines relative to recommendations to all registered blood Boufford, Jo Ivey, M.D., acting president, New York City Health and Chambers, Donald, M.D., on behalf of Health Insurance Association of Clifford, Karen, counsel, Health Insurance Association of America......... Gamble, Stephen, on behalf of American Hospital Association... Goldbeck, Willis B., president, Washington Business Group on Health Hardy, Ann M., Dr. P.H., epidemiologist, surveillance and statistics sec- tion, Aids Activity, Center for Infectious Diseases, Centers for Disease Control, Public Health Service, Department of Health and Human Lehnhard, Mary Nell, vice president of government relations, Blue Cross 294 Lennon, Patrick, administrator, Glades General Hospital Nance, Brent O., CLU, Aids Project of Los Angeles, Concerned Insurance Smith, Elmer W., Director, Office of Eligibility Policy, Bureau of Eligibil- ity, Reimbursement and Coverage, Health Care Financing Administra- Thompson, Robert, vice president for health policy development, Greater 235 Wachs, Joel, councilman, city of Los Angeles 331 Lewis, Hon. Tom, a Representative in Congress from the State of Florida.. 205 RESEARCH AND TREATMENT FOR ACQUIRED IMMUNE DEFICIENCY SYNDROME MONDAY, JULY 22, 1985 HOUSE OF REPRESENTATIVES, COMMITTEE ON ENERGY AND COMMERCE, SUBCOMMITTEE ON HEALTH AND THE ENVIRONMENT, Washington, DC. The subcommittee met, pursuant to call, at 1:50 p.m., in room 2322, Rayburn House Office Building, Hon. Henry A. Waxman (chairman) presiding. Mr. WAXMAN. The meeting of the subcommittee will please come to order. Please forgive me for the delay. I thought this meeting started at 2 o'clock. This afternoon's hearing is on treatment for AIDS. We will hear from those who actually care for patients, from those who study the cost of care, and from those who do research on care. I think that we will learn the same things from all our witnesses: There is no cure for AIDS, only expensive and eventually unsuccessful treatment. I believe that the Federal Government is now doing far too little to look for effective treatments. Months ago, the Cancer Institute warned that research on drugs was "fragmentary." Under its current budget, the Infectious Disease Institute cannot afford to test antiviral drugs on the AIDS virus. Even those drugs that are studied are being used in only 9 patients, although-if it could afford to-the NIH would ask for "an additional 100 plus." In fact, last week one of NIH's lead researchers, Dr. Robert Gallo, simply told French journalists what no one would tell the U.S. Congress, "The work done right now in therapeutic research is insufficient." Many scientists have called for major new efforts to find antiviral drugs and treatments to restore immunity. Our first witness, Dr. Mason, has led in the Public Health Service's reevaluation of its research efforts. But until last Friday, the administration's budget makers had stopped these scientists before they could start. The administration policy was "freeze, no matter what." The administration's AIDS budget had little room for basic research even on the virus, much less on treatment for the disease it causes. I am happy to say, however, that on Friday the administration changed its mind. After 5 months of work by Dr. Mason, after repeated congressional hearings and requests for information, and after a threat of subpoena of AIDS documents, the administration sent the Congress a new budget just before this hearing. On Friday evening, the administration formally requested a 47-percent increase in the 1986 budget for AIDS, as well as a small increase in the 1985 budget. I will provide the subcommittee's most recent request and the Department's response for the record. I am sorry to say that the OMB has continued its policy of robbing Peter to pay Paul, and will only allow the PHS to work on AIDS if it stops work on other problems. But for now, at least the Congress has a professional judgment of the minimum amount that is necessary for AIDS, and a sizable portion of that is for treat ment. For years now the rationale for the Federal work on AIDS has been based on a lesson from polio: During an epidemic, first look for prevention and then look for cure. With limited money, first look for a vaccine, not for an iron lung. The horror of the AIDS epidemic is that thousands and thousands of Americans will die before a vaccine is feasible. We cannot afford to limit our efforts. For now, unfortunately, as the case count grows, we must look for an iron lung, too. [Testimony resumes on p. 18.] [The material referred to follows:] This letter is to follow up on our phone conversation of m than two weeks ago regarding your review of the adequacy of the Health Service's personnel and resources available for work on At the time of our conversation, I noted that the Eouse Appropr: Subcommittee was soon to begin its consideration of the Fiscal appropriation legislation, and that, in order for the Congress respond to the AIDS epidemic adequately, the results of your re should be available to the Subcommittee. I must write now to say that I am extremely distressed that Administration has not yet produced its recommendations for rev. in funding and personnel requests. The Appropriations Subcommit has begun its consideration of legislation and, while it has now recessed temporarily, it will resume its markup in the very nea future. I need not remind you that the Administration was simil compromised and embarrassed by its failure to provide needed information on AIDS in a timely manner during the appropriation proceedings for 1984 and 1985. In hearings and investigations by the Health and Environme Subcommittee, it has become obvious that however well qualified scientists and researchers may be that are appointed to adminis agencies, their advice was not sought and their suggestions not in the construction of the Administration's requests for AIDS. 1984, specific suggestions of Administration-appointed public h officials were rejected by you, despite their urgent nature. Τ year an ideological judgment was made by budget officers that levels of funding were to be justified no matter what the best professional judgment of the agency directors and experts might been. In response to the Congress's obvious displeasure at such exercises in rationalization and equivocation, you and the Acti Assistant Secretary for Health made a commitment to review the requests. Pledges were made to solicit the true professional j of PHS scientists as to the resource and personnel needs for de with this epidemic. I have requested in hearings, through staff, and by telephone that the Administration provide the Congress with these profession judgments. The first promise to do so was made in February. now July. It i I now request that you forward immediately all documents regarding resource and personnel needs for AIDS for Fiscal Year 19 and any documents regarding supplemental appropriations for AIDS w for Fiscal Year 1985. Such documents should include at a minimum submissions made to: the Directors of each of the individual National Institutes o Health and the Division of Research Resources, the Director of the National Institutes of Health, the Director of the Centers for Disease Control, the Commissioner of Food and Drugs, the Director of the Alcohol, Drug Abuse and Mental Health Administration, the PHS AIDS Task Force, the Assistant Secretary for Health, the Assistant Secretary for Management and Budget, The Subcommittee on Health and the Environment has scheduled hearing on AIDS research for July 22nd. If all documents are not received by that date, I will be forced to consider action to subp the information. I am indeed sorry to be so blunt in my requests. I do believe that my staff and I have made every effort to cooperate in the Department's schedule and to allow the Administration opportunity t act with reasonable efficiency. For six months, however, the Congr has awaited the courtesy of a response, and none has been forthcom: During those six months almost 1,800 Americans died of AIDS and alr 3,300 more were confirmed to have this almost certainly terminal condition. Under such circumstances and in light of the Administration's previous years of delay and neglect, I do not beli that we can wait longer. I await your immediate reply. Sincerely, Domy Henry A. Waxman, Chairman |