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The C. Everett Koop Papers

"Introduction to AIDS Archive" [Reminiscence] pdf (644,007 Bytes) transcript of pdf
"Introduction to AIDS Archive" [Reminiscence]
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6 (644,007 Bytes)
Date Supplied:
Koop, C. Everett
Reproduced with permission of C. Everett Koop.
Medical Subject Headings (MeSH):
Exhibit Category:
AIDS, the Surgeon General, and the Politics of Public Health
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Introduction to AIDS archive:
AIDS entered the consciousness of the Public Health Service quietly, gradually, and without fanfare. I was at a staff meeting in June of 1981, as the Surgeon General designate, when the Centers for Disease Control published a report and discussed it at a staff meeting concerning five "previously healthy homosexuals", who had been admitted to Los Angeles hospitals with pneumonia caused by a very rare organism - pneumocystis carinii.
By the time the report was published, two of the men had died. The other three died shortly thereafter. Five cases are certainly not many, but this lethal pneumonia was so rare that a handful of cases in a single year - especially in a single place - constituted an epidemic. Soon reports trickled in of cases in other cities.
Then a month later, the Public Health Service published a report that 26 young homosexual men had been recently diagnosed as having Kaposi's sarcoma, an "uncommonly reported" cancerous condition, usually found, if at all, among elderly men.
I was the only one at the staff meetings who had ever seen pneumocystis carinii pneumonia, and that was because I worked in a children's hospital where I did lung biopsies to make that diagnosis in children who were immuno suppressed because of cancer chemotherapy. I had also seen one case of Kaposi's sarcoma in my entire life, and that at the Allgemeine Krankenhaus in Vienna. From that small beginning, the AIDS epidemic of the late 80s mushroomed. Epidemiologists from Centers for Disease Control opined that these otherwise healthy normal people were apparently acquiring some type of virus that attacked and destroyed their immune system. The virus itself was not killing these people, they were succumbing to other extremely virulent diseases - eventually called "opportunistic diseases", because this infectious agent, whatever it was, prevented the body from fighting them off. Since the first cases affected only homosexuals, the Public Health Service called the disease, "GRID" - Gay Related Immune Deficiency. Shortly thereafter, as heterosexuals began to fall victim to it, GRID became the "Acquired Immuno Deficiency Syndrome", or A.I.D.S., which was shortened to just AIDS. Although, I was in on AIDS from the start, I didn't assume an important role in government in reference to AIDS until the end of Ronald Reagan's first term in office. By August 1981, I and others, who were paying attention to the unusual news from the CDC, learned that there were 108 cases of AIDS reported with 43 dead. I knew then that we were in big trouble. My first real confrontation with other members of the Public Health Service came when I said, "If this is a homosexual disease, one of the things we will have to come to grips with, early on, if we are to control it, is the forced sodomy which takes place in prisons and would be a source of rapid spread of the disease". No one at the staff meeting agreed with me, and it was years before anyone, especially the Centers for Disease Control were talking about AIDS among prisoners.
I realize that if ever there was a disease made for a Surgeon General, it was AIDS. The Surgeon General is mandated by Congress to inform the American people about the prevention of disease and the promotion of health. If ever there was a public in need of education and straight talk about AIDS, it was the American people.
But for an astonishing five and a half years, I was completely cut off from AIDS. The Assistant Secretary for Health, my immediate boss, told me that I would not be assigned to cover AIDS. The Department took its cue from him. Even though the Centers for Disease Control commissioned the first AIDS Task Force as early as June 1981, I as Surgeon General was not allowed to speak about AIDS publicly until I took it upon myself to do so.
Whenever a two-term President is awaiting his second inauguration, and lame-duck congressmen and senators are packing boxes to move on, presidential appointees begin to leave Washington like rats leave a sinking ship. One of the things I realized early on about political appointments was that many accepted them in order to become expert in some phase of government operation so that they would be able to convert that expertise into big bucks. Indeed, a lot of them spent the President's first term standing on tiptoe looking into the distance for that six-figure job.
As people in the Public Health Service, who had appointments by President Reagan began to go home, there was no one left to police me, and in as much as I felt better able to communicate with the public than anyone who was left, and really not understanding why I had been so confined, I began to attend meetings, ferret out information, and it remained for President Reagan to give me an assignment that catapulted me into the position of chief spokesperson for the government in reference to AIDS. When I say chief spokesperson that meant to the public, to the Congress, to the health departments of foreign governments, and to the United Nations itself.
It happened his way:
The day after President Reagan gave his "State of the Union" message after inauguration in 1987, he, in an unusual move, came across town to the Humphrey Building and in the great hall spoke to a packed house, standing in the atrium, about his gratitude to them for the way they were handling the health problems of the nation of which AIDS was one. Toward the end of his speech he said, "I'm asking the Surgeon General to prepare a report on Acquired Immuno Deficiency Syndrome for the people of the United States." It's good that I was listening carefully, because that's the only directive I had from anyone about that report. I proceeded with an appropriate degree of urgency, selected a few close associates to be my staff for preparation of this document and then set about informing various segments of the public about what I felt I had to say about AIDS in the report, and learning from them which points were supersensitive, and would require discussion to me before the various organizations would accept what I felt essential to say to the public.
This story would not be complete if I didn't mention the fact that the Reagan revolution brought into positions of power and influence Americans whose politics and personal beliefs predisposed them to antipathy toward the homosexual community. This influenced the AIDS crisis in two ways. First, it slowed the understanding of AIDS. In the early years of AIDS, (also the early years of the Reagan Administration), health officials were shocked and dismayed by the link between the spread of AIDS and the promiscuity and perversity of many homosexuals' behavior. Revelations about the promiscuity of some homosexuals with multiple partners and the fact that sodomy with multiple anonymous partners provided valuable information about a possible method of AIDS transmission: semen of one to blood of the other, led to a profound reluctance on the part of some health officials to discuss these sensitive (some said abhorrent) issues publicly. So, under directions from more than one White House source, they simply made vague references to "exchanging bodily fluids" thus, considerably slowing down the public's understanding of how AIDS can be transmitted.
Second, the conservative politics of the middle and late years of the Reagan Administration attempted to thwart my attempts to educate the public about AIDS and tried to stir up hostility toward its victims. I tried to rise above the politics of AIDS, but it would cost me many friendships. Just to keep you informed about what was happening in science elsewhere, in May 1983, Robert Gallo of the National Institutes of Health and Luc Montagnier of the Pasteur Institute in Paris, identified the infectious agent that caused AIDS: A virus dubbed HIV - III or Human Immuno Deficiency Virus. In early 1984, there were over 5,000 reported cases of AIDS with 2,300 deaths. In spite of all that I've said there was no public outcry or any outcry even from organized medicine for more and appropriate leadership from the government. In 1985, as the Public Health Service and other branches of the medical community learned more about AIDS, they provided a weapon in this struggle against this strange disease: a test to identify the presence of antibodies to the HIV virus in the blood supply.
In spite of the confusion, frustration, anger, and ignorance, the government did press forward and make astounding advances in medical science and research. We learned as much about AIDS in six years, as we had learned about polio in forty. It was a testament to these unflagging efforts that a reliable blood test was discovered and made generally available as early as the fall of 1985.
That test changed a lot. The odds of getting an AIDS contaminated unit of transfused blood fell from between 1 in 40 thousand, to 1 in 250,000. Compare those odds with say, death on the highway 1 in 5,900.
Dr. Tony Fauci, later to direct AIDS research at the National Institutes of Health, insisted we check out any study that did seem to rule out the spread of AIDS by casual contact. Gradually, a convincing body of research led us to some important conclusions, because of that we stressed four important conclusions about AIDS:
It was fatal
It was spreading
It was transmitted mainly by certain specific behavior involving sex and/or drugs
There was no cure.
Ed Brandt, the Assistant Secretary for Health, had left the administration to go to the University of Maryland as Provost on the Baltimore campus and had been succeeded by James 0. Mason as Acting Assistant Secretary for Health. Mason made me a member of the AIDS Task Force. He and I also agreed that AIDS demanded a clear spokesperson, and I could make any statement I thought appropriate. At last, I could speak up.
Meanwhile, I was preparing the report the President had requested, and I met with 27 distinct groups representing AIDS advocacy, business, education, health, labor, pubic officials, and religion. A list follows:
AIDS Advocacy Groups
AIDS Action Council
National Coalition of Black Lesbians and Gays
National Minority AIDS Council
American Council on Life Insurance
Health Insurance Institute
Washington Business Group on Health
National Association of Elementary School Principals
National Association of Secondary School Principals
National Association of State Boards of Education
National Education Association
National Parents and Teachers Association
American Dental Association
American Hospital Association
American Medical Association
American Nurses Association
American Osteopathic Association
American Red Cross
National Hemophilia Foundation
American Federation of Teachers
Service Employees International Union
Public Officials
Association of State and Territorial Health Officers
National Association of County Health Officials
U.S. Conference of Local Health Officers
Christian Life Council of the Southern Baptist Convention
National Council of Churches of Christ
Synagogue Council of America
U.S. Catholic Conference
Without representatives from the aforementioned groups, there would have been no AIDS report. I needed to be in touch with all of the national groups that were concerned about AIDS. I wanted to make sure they knew what I was doing, and I wanted none to say, after the report was published that they had been blindsided or kept in the dark.
Maintaining control of the report, keeping the circle small, meant that I would have only a very small staff to help me. Dr. Michael Samuels brought with him a broad background of public health endeavors, and he also brought the part-time help of Jim McTigue, a commissioned officer with whom Mike and I had frequently worked on intergovernmental affairs. We were supported by a small team: the Assistant Surgeon General, Jim Dixon; and Edward Martin, my Chief of Staff; my Deputy Director of the Office of International Health, Hal Thompson; my personal assistant, Stephanie Stein: and of course, my Deputy Surgeon General, Faye Abdelluh.
The information provided by the National Hemophilia Foundation was critical. We had more information on hemophiliacs and their behavior while infected with HIV, than we had on any other group. Their infection, of course, had come from contaminated blood and blood products used in the treatment of their disease.
I found the people from the Southern Baptist Convention to be delightful, but very naive about AIDS. I think they were shocked by what we had to tell them, about how the virus was sexually transmitted. I thought they might be uncomfortable with a mandate for sex education I planned to mention in my report, so I challenged them to write their own sex education curriculum for their twenty-six million constituents, To their credit, within six months of our chat, they did what I had suggested, and I had the pleasure of giving their annual convention's keynote address when they announced their curriculum on human sexuality.
I released the report on Acquired Immuno Deficiency Syndrome that the President had asked me to write, on October 22, 1985. It is amazing that this was five years and four months from the first internal discussion of AIDS by the Public Health Service in the Humphrey Building on Independence Avenue, in June of 1981.
There is a story about my presentation of the report to the Cabinet that appears no place else that I know of, except in my autobiography. We had ordered a huge supply of this document on the cheap stock that the government usually uses for such reports. My concern was that when I presented the report, some members of the Cabinet would ask that changes be made too "soften" the language. Inasmuch as I felt that specific language was essential to my mission, I devised a plan to present each of the Cabinet, not with a cheap paper report, but one on glossy paper, bound with a cover in royal blue (the Public Health Service color), and imprinted with the title and the great seal of the Public Health Service in silver. My hope was that they would assume the report was so expensive that they would not suggest that the thousands upon thousands that had already been printed be scrapped, in order to make a few words changes. I was right, and no changes were made. The report was presented to the public by way of a press conference the following morning, October 22, 1985. A copy of the report follows, which will lend credence to the lectures that follow.
In the lectures that follow, there will be a sampling of the talks I gave on AIDS beginning with January 15, 1987 and progressing on for the next several years. Because, in this archive, all the AIDS speeches will be together, each introductory page for each individual lecture will only cover matters pertinent to that lecture, which have not been covered in previous introductory material. The reader will also know how much time elapsed since the last report by lecture to the public, and in that way, the reader will understand that lectures are given in close sequence, not much increase of knowledge. However my presentation changes depending upon the venue, the audience, and the past history of that audience in reference to AIDS.
The report that was given by me in 1985 to the American public still stands pretty much today as truth. The exceptions are these: we now know that all people are not equally susceptible to infection by the virus, but we can measure who they are, and the treatment has been refined greatly. In many of the early lectures I mention treatment with AZT, (Zidorudiaine, formerly Azidothymidine), which I said, merely prolonged life. We now know that that's all any treatment can do, because thus far, AIDS is not curable, and we are still without a vaccine. However, with proper treatment, started early, it is possible, probably to live out one's normal life expectancy and die of other causes.
In any lecture, especially by a government officer, it is the question and answer time that is more important. It is the most stressful and demands the greater depth of knowledge.
The report was written for American consumption, although it was used by a number of foreign countries when it was published, either in whole or in part, and was the template that served in the writing of the British report to its own people.
This introductory writing is being undertaken in the winter of 2002-2003, when the world faces genocide from AIDS in some of the countries of Africa and Asia. In these countries, poverty, sexual custom, lack of databases, denial, illiteracy and poor health education, as well as faulty government policy contribute to the terrible scourge that AIDS has become in the developing nations. Money can't fix it all, but it would go a long way to help.
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