Shoulders To Stand On                                                                           EC November Issue 2016

The Long Road To Wellness

Once Michael Gottlieb in 1981 identified the virus which would be called gay cancer, grid, gay compromise syndrome, HIV and finally AIDS, it took the government, the medical establishment and society a few years to move beyond shock, fear and denial to finally begin to deal with this deadly disease.

The first phase of research focused on identifying what the cause of AIDS was.  To this end research into the groups of people who contracted AIDS was focused on as well as how the disease was transmitted.   In September, 1882 the CDC defined a case of AIDS as a disease, at least moderately predictive of a defect in cell-mediated immunity, occurring in a person with no known cause for diminished resistance to that disease. Such diseases included KS, PCP, and serious OI. Diagnoses were considered to fit the case definition only if based on sufficiently reliable methods (generally histology or culture). Some patients who were considered AIDS cases on the basis of diseases only moderately predictive of cellular immunodeficiency may not actually be immunodeficient and may not be part of the current epidemic.

By the end of 1982, a number of AIDS-specific organizations had been set up including Gay Men’s Health Crisis in New York City founded in 1981,  the San Francisco AIDS Foundation (SFAF) in the USA and The Terry Higgins Trust (later known as the Terrence Higgins Trust) in the UK, to provide safer sex advice to gay men.  In 1982 in Rochester Drs. Roy Steigbigel and Tom Rush held  clinics on AIDS in conjunction with Sue Cowell at the University Health Services at the U of R to provide information and allay fears of the growing epidemic.  In November , 1982 an ad hoc group of volunteers met to address the the needs of local perswons with AIDS.  This group would later form AIDS Rochester.  In 1983 the AIDS Institute was created within the NYSDOH to coordinate the state’s policies and response to the growing AIDS epidemic.  In November, 1983 the Rochester Area Task force on AIDS was formed.  These organizations and efforts took place within a relatively short period of time from when the AIDS virus was identified, and provided researchers with valuable information on who, how, and the symptomlogy of the disease.

In May, 1983 doctors at the Pasteur Institute in France reported the discovery of a new retrovirus called Lymphadenopathy-Associated Virus (or LAV) that could be the cause of AIDS.  By September, the CDC identified all major routes of transmission and ruled out transmission by casual contact, food, water, air or surfaces.  Then a giant leap forward.  In April 1984, the National Cancer Institute announced they had found the cause of AIDS, the retrovirus HTLV-III. In a joint conference with the Pasteur Institute they announced that LAV and HTLV-III are identical and the likely cause of AIDS.  In March, 1985 the HIV antibody test is licensed and use begins in blood banks.  N.Y.S. established an “alternate testing program” later known as as the anonymous HIV Counseling and Testing program.  Official statements discouraged testing of persons at high risk because it offered ‘no definitive” medical information.  Now, with the cause of AIDS being known, the focus would shift to prevention, treatment with the hope that a vaccine would be developed in 2 years.

On 17th September 1985 President Reagan publicly mentioned AIDS for the first time, when he was asked about AIDS funding at a press conference.  “I have been supporting it for more than 4 years now. It’s been one of the top priorities with us, and over the last 4 years, and including what we have in the budget for ’86, it will amount to over a half a billion dollars that we have provided for research on AIDS in addition to what I’m sure other medical groups are doing”.

On 2nd October 1985, the actor Rock Hudson died of AIDS. He was the first major public figure known to have died from an AIDS-related illness. 36

In January, 1986 a Japanese researcher said that a new drug treatment for AIDS tested on 15 patients in the US proved effective in keeping the virus frommultiplying but cannot be considered a cure.  Research scientists at the CDC discovered the way the AIDS virus zeroes in on its target in the body’s immune system.  Dr. Steven J. McDougal says finding suggests new ways of stopping or preventing AIDS infection.  In Febraury, 1986, AZT Phase II testing begins with 300 patients.  Placebo control group was used initially, but dropped quickly when 16 on placebo die as opposed to one on AZT.  The FDA challenged Newport Pharmaceuticals Inc’s report that it had some success treating AIDS with Isoprinosine.  In March, 1986 scientists at NCI identified and produced in pure form the enzyme that is key to ability of AIDS virus to infect human cells.  Scientist led by Dr. Flossie Wong-Staal, and a team at Harvard Univ’s Dana Farber Cancer Institute, led by Dr. William A Haseltine, found a way to make the AIDS virus harmless by inactivating one of its genes in laboratory in laboratory experiments.

In May, 1986 researchers for the first time grew the AIDs virus in animal tissues.  Researchers also discover a seventh gene that makes the AIDS virus the most complex of any of the retroviruses.  In 1986 the Surgeon General’s Report on AIDS was published.

In March 1987 the U.S. Food and Drug Administration (FDA) approved AZT as the first antiretroviral drug to be used as a treatment for AIDS.  By 1988 frustration was growing over the length of time it had taken to approve AZT and the FDA’s slow progress in improving access to other experimental AIDS drugs. On 11th October 1988 more than a thousand ACT UP demonstrators descended on the FDA headquarters in Rockville, Maryland, demanding quicker and more efficient drug approval. Eight days later the FDA announced regulations to cut the time it took for drugs to be approved.

In 1989 results from a major drug trial know as ACTG019 were announced. The trial showed that AZT could slow progression to AIDS in HIV-positive individuals with no symptoms. These findings were thought to be extremely positive; on August 17th a press conference was held, at which the Health Secretary, Louis Sullivan said: “Today we are witnessing a turning point in the battle to change AIDS from a fatal disease to a treatable one.”

The initial optimism was short-lived when the price of the drug was revealed. A year’s supply for one person would cost around $7,000, and many Americans did not have adequate health insurance to cover the cost. Burroughs Wellcome, the makers of AZT, were accused of ‘price gouging and profiteering’. In September, the cost of the drug was cut by 20 percent.

Shoulders To Stand On recognizes the challenges faced in AIDS research – financially, technologically, governmentally, and societally.  We also recognize the accomplishments and achievements of those in research, treatment and direct care.  As we move through the intervening years between 1986 and the present,  Shoulders To Stand On recognizes the cyclical movement that brings success, and applauds the perseverance, commitment and dedication of those who have experienced the small steps forward and the steps backward.   Next month. The Long Road To Wellness will look at the “cocktail.”

Rochester AIDS History Chapter 20

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