A Brief History of HIV
A Look at the Medical and Political Landscape
For those of us lucky enough to be around to remember how it all began, this will be a reminder. For the younger crowd and those for whom dealing with HIV is a relatively new experience, I hope this brief history of HIV will be informative and provide a different perspective for you.
It is likely that we will never know exactly where, when, and how HIV came into being. The most prevalent theory is that it mutated from SIV (Simian Immunodeficiency Virus), which has been identified in certain subgroups of chimpanzees found in west-central Africa. It is not believed to have crossed-species (a process called zoonosis) through sexual contact (sorry to the zoophiles), but through the food chain.
Long story short, "Chimp Zero" hunts, kills and eats one infected red-capped mangabey and one infected greater spotted nosed monkey, the two different strains of virus have a viral quickie and a new strain of SIV is born, with the capability of mutating in a human host. Our unlucky chimp friend in turn is hunted, killed, and butchered. The chimp's infected blood, most likely through a cut on the butcher's hand or as an undercooked entrée, enters a human's bloodstream. The virus mutates to adapt to the human environment and -- voila! We now have a previously unknown retrovirus with the ability to destroy the human immune system that is spread through one of humanity's favorite pastimes.
Some indications of when this happened come from records showing HIV present in a plasma sample taken in 1959 from a man in what is now the Democratic Republic of the Congo, a tissue sample from a teenager from St. Louis who died in 1969, and another tissue sample of a Norwegian sailor who died in 1976. Shortly after this in the mid-late 70's, the beginnings of the pandemic as we know it began to emerge. Otherwise young, healthy gay men began being diagnosed with a rare form of skin-cancer called Kaposi's sarcoma that usually only affected the elderly, and a rare lung infection then called Pneumocystis carinii pneumonia (PCP).
I was very intrigued to learn that the first suspicions about the instance of PCP were raised by a very observant drug technician at the U.S. Centers for Disease Control and Prevention (CDC) in Atlanta in 1981, who noticed that a prescription refill was ordered for a gay man in his twenties of the rarely used drug pentamadine. She found it unusual since most who took the treatment were either cured in 10 days or they died.
In June of 1981 a report was published by the CDC of five men in Los Angeles who had been diagnosed with PCP with no identifiable cause. This is sometimes referred to as the "beginning" of AIDS, but in light of the information we now have it would be more accurately named the beginning of awareness of AIDS in the United States. The disease was known by several different acronyms and names, such as "GRID" (gay-related immune disorder), the more inclusive "CAID" (community-related immune deficiency), and the pragmatic if not particularly sensitive "Gay Cancer."
In 1982, the CDC reported occurrences of the disease in Haitians and hemophiliacs and concludes that the syndrome was linked to an infectious agent blood -- up until now there had been lots of speculation about its cause including poppers, cytomegalovirus, and immune overload. So they have to come up with a new non-gay name and decide to call it AIDS, for Acquired Immune Deficiency Syndrome. It is now called a syndrome since it's found in multiple diseases, not just one.
In the same year a number of voluntary community-based organizations are created in the hardest-hit metropolitan areas in the United States, including the San Francisco AIDS Foundation, AIDS Project Los Angeles, and Gay Men's Health Crisis in New York. More people begin taking notice of this new disease, as it began to turn up in children and transfusion recipients and was no longer considered just a gay epidemic.
In response to the estimated 1,060 people in the U.S. who have died up to this point in time, President Ronald Reagan, the Gipper and former B-picture movie star, says nothing.
By 1983 there was reasonable certainty that AIDS was spread through gay male sexual contact, tainted blood transfusions, and needle sharing by injection drug users. However, cases of AIDS were reported among women with no other risk factors, suggesting that it was transmissible through heterosexual sex as well, and the CDC convened to consider how transmission might be prevented. The statement issue in March by the CDC said that:
"Persons who may be considered at increased risk of AIDS include those with symptoms and signs suggestive of AIDS; sexual partners of AIDS patients; sexually active homosexual or bisexual men with multiple partners; Haitian entrants to the United States; present or past abusers of IV [intravenous] drugs; patients with hemophilia; and sexual partners of individuals at increased risk for AIDS ? each group contains many persons who probably have little risk of acquiring AIDS ? very little is known about risk factors for Haitians with AIDS."
In this year, researchers at the Institute Pasteur in France reported the isolation and identification of a virus that might be the cause of AIDS, and a few months later named it LAV (Lymphoadenopathy Related Virus).
Reports of AIDS occurring in children began to fuel mass hysteria about AIDS being spread through casual contact. This was further perpetuated by the use of gloves by police officers in major cities and the Social Security Administration beginning to interview AIDS patients only by phone rather than in person.
In response to this climate the CDC attempts to issue some measure of comfort with the statement that AIDS is most likely spread through intimate sexual contact, contaminated needles, and less commonly through infected blood transfusions, and that there was no evidence that it could be spread through casual or airborne contact. Infants and children were assumed to have contracted it from their mothers.
The CDC published the first set of precautions for healthcare workers to prevent the transmission of AIDS from patients. In October the first World Health Organization (WHO) convened in Denmark, where it was reported that there had been 2,803 AIDS cases in the U.S. By the end of the year the number of reported cases had risen to 3,064, with 1,294 resulting deaths.
In response to this devastation of American lives, the Reagan administration still said absolutely nothing.
And so it goes. In 1984, Dr. Robert Gallo of the U.S. National Institutes of Health (NIH) claims to have discovered the virus that causes AIDS and calls it HTLVIII, but it turns out to have been the same virus discovered by the French a year earlier. The NIH speculated that a vaccine would be ready for testing in "about two years."
The City of San Francisco closes all gay bathhouses and sex clubs, leading to questions about the violations of civil rights, which went nowhere.
By the end of 1984 there have been over 7,600 AIDS cases with over 3,600 deaths. The Reagan Administration remains consistent by continuing to say and do not a damn thing!
1985 continued with controversy over whether the NIH or the French had discovered the virus, but in spite of that the first blood test to detect the virus was licensed commercially. The first International Conference on AIDS was held in Atlanta to provide a public forum for the fight between the NIH and the French, as well as to decide whether or not heterosexual transmission was as big a deal as was previously thought.
A nine-year-old hemophiliac with AIDS named Ryan White was allowed to return to school, but was later barred when parents began keeping their children at home out of fear of casual transmission. As an "innocent" victim of AIDS, Ryan White became the symbol of the intolerance that was widely inflicted upon people with AIDS. In response to a reporter's question regarding the Ryan White situation and AIDS funding, President Reagan finally (over 13,000 American deaths later) comments:
"It is true that some medical sources had said that this cannot be communicated in any way other than the ones we know and would not involve a child being in school. And yet medicine has not come forth unequivocally and said, 'This we know for a fact, that it is safe.' And until they do, I think we just have to do the best we can with this problem. I can understand both sides of it."
I think it may have been better when he said nothing. Just a few weeks later, Rock Hudson, long-time friend and co-star of the president, becomes the first public figure to die of AIDS. Through the end of the year the battle of the egos continues when the Pasteur Institute in France files suit against the National Cancer Institute (NCI) in the U.S. to claim a portion of the royalties from the NCI's patent on the Western Blot HIV Antibody test.
Also in this year, condoms were shown to prevent the spread of HIV, and the American Foundation for AIDS Research (amfAR) was founded. In Central Africa, cases of AIDS are being reported under the name "slims disease," describing the symptom of chronic weight loss.
1986 starts with a bang as Ronald Reagan uses the word AIDS for the first time in a speech to Congress. U.S. Surgeon General C. Everett Koop issues an official report on AIDS calling for more sex education. A research network of clinical studies, the AIDS Clinical Trials Group (ACTG), is formed by the federal government. The WHO is the first to recognize clean syringes as a possible prevention strategy for IV drug users and it also launches its first Global AIDS strategy.
1987 was a bit busier. The drug AZT (Retrovir), which was originally discarded as a cancer treatment, is the first drug approved to treat AIDS. A grassroots activist organization called ACT UP (AIDS Coalition to Unleash Power) formed in New York City, with other chapters soon to follow in other epicenters of the crisis. The NAMES Project AIDS Memorial Quilt displayed an enormous quilt, larger than a football field, on the lawn of the Washington Monument with 1,920 panels. Each panel represented the passing of a person from AIDS. Yet despite the staggering message the quilt delivered, it represented only a fraction of the 20,000 persons in the U.S. already fallen to the disease.
The display was followed by a massive protest by ACT UP with scores of protesters arrested for civil disobedience by rubber-gloved police. The brand of protest became the trademark of ACT UP for nearly a decade and brought a great deal of attention to the crisis, influencing FDA drug approvals and other issues of treatment. Right-wing Senator Jesse Helms introduces legislation in response to the Surgeon General's recommendation on sex education to combat the spread of the virus. His legislation prevented any type of AIDS education that could "encourage or promote homosexual activity." A book by Randy Shilts chronicling the first years of the epidemic, "And the Band Played On," is published. Test Positive Aware Network, Chicago's first peer-led AIDS service organization, is founded.
The rest of the '80s was more of the same. More bureaucracies were created within the NIH and other parts of the government. ACT UP protested fearlessly and was able to pressure the FDA into speedier drug approvals, expanded access, and getting the cost of AZT lowered. Drugs to treat and prevent opportunistic infections, which affect people with weakened immune systems, become available. C. Everett Koop's AIDS Education Campaign is launched after prolonged squabbling by right-wing conservatives about content, making the U.S. the last industrialized nation to create a comprehensive prevention and education program.
The '90s saw much more positive action in the fight against AIDS. The Ryan White CARE Act was established by Congress to help those with HIV who lacked adequate insurance coverage. The Americans with Disabilities Act (ADA) was created and included protection against discrimination towards people with HIV and AIDS. Two years after leaving office Reagan apologizes for neglecting to address the issue while President. The presidential elections of '92 gave more voice to the epidemic. A second drug for treatment of HIV was approved and clinical studies for combination therapy began, paving the way for the "cocktail" that is the standard of treatment today. Despite some headway in the fight, by 1994 AIDS is the leading cause of death for all Americans between the ages of 25-44.
More roadblocks in drug-approval and access were lifted by the FDA leading to the first real breakthrough in 1995 with the approval of the first protease inhibitor (PI), Invirase (saquinavir). The following year two more PIs, Norvir (ritonavir) and Crixivan (indinavir), are approved along with another new class of drug, the non-nucleoside reverse transcriptase inhibitor (NNRTI) which includes Sustiva (efavirenz) and Viramune (nevirapine).
In 1996 the International Conference on AIDS reveals that HAART (highly active antiretroviral therapy) which combines three drugs, is extremely effective in reducing the amount of viral activity in the bloodstream and causing a significant rebounding of the immune system of treated individuals. Not completely without side-effects, the "cocktail" was generally well tolerated after an acclimation period. This breakthrough in treatment represents the beginning of the end of the loss of life to HIV and AIDS that we had come to know, and is the beginning of the era of HIV as a chronic manageable illness that we live with today.
Bill Farrand is Service Directory Coordinator at TPAN.
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This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.