AVERT - AVERTing HIV and AIDS

AVERT - AVERTing HIV and AIDS

History of AIDS up to 1986These are some of the most important events that occurred in the history of AIDS up to 1986.
Mid-1970's-1980 historyWe do not know how many people developed AIDS in the 1970s, or indeed in the years before. Neither do we know, and we probably never will know, where the AIDS virus HIV originated (see our origins page for some theories). But what we do know is:
"The dominant feature of this first period was silence, for the human immunodeficiency virus (HIV) was unknown and transmission was not accompanied by signs or symptoms salient enough to be noticed. While rare, sporadic case reports of AIDS and sero-archaeological studies have documented human infections with HIV prior to 1970, available data suggest that the current pandemic started in the mid- to late 1970s. By 1980, HIV had spread to at least five continents (North America, South America, Europe, Africa and Australia). During this period of silence, spread was unchecked by awareness or any preventive action and approximately 100,000-300,000 persons may have been infected." - Jonathan Mann 1 1981 HistoryKaposi's Sarcoma (KS) was a rare form of relatively benign cancer that tended to occur in older people. But by March 1981 at least eight cases of a more aggressive form of KS had occurred amongst young gay men in New York.2
At about the same time there was an increase, in both California and New York, in the number of cases of a rare lung infection Pneumocystis carinii pneumonia (PCP)3. In April this increase in PCP was noticed at the Centers for Disease Control (CDC) in Atlanta. A drug technician, Sandra Ford, noticed a high number of requests for the drug pentamine, used in the treatment of PCP:
"A doctor was treating a gay man in his 20s who had pneumonia. Two weeks later, he called to ask for a refill of a rare drug that I handled. This was unusual - nobody ever asked for a refill. Patients usually were cured in one 10-day treatment or they died" - Sandra Ford for Newsweek 4 In June, the CDC published a report about the occurrence, without identifiable cause, of PCP in five men in Los Angeles5. This report is sometimes referred to as the "beginning" of AIDS, but it might be more accurate to describe it as the beginning of the general awareness of AIDS in the USA.
A few days later, following these reports of PCP and other rare life-threatening opportunistic infections, the CDC formed a Task Force on Kaposi's Sarcoma and Opportunistic Infections (KSOI).6
Dr. Conant and Dr Volverg discussing
Kaposi's Sarcoma. Circa 1981
Around this time a number of theories were developed about the possible cause of these opportunistic infections and cancers. Early theories included infection with cytomegalovirus, the use of amyl nitrite or butyl nitrate "poppers", and "immune overload".7 8 9
Because there was so little known about the transmission of what seemed to be a new disease, there was concern about contagion, and whether the disease could by passed on by people who had no apparent signs or symptoms.10 Knowledge about the disease was changing so quickly that certain assumptions made at this time were shown to be unfounded just a few months later. For example, in July 1981 Dr Curran of the CDC was reported as follows:
"Dr. Curran said there was no apparent danger to non homosexuals from contagion. 'The best evidence against contagion', he said, 'is that no cases have been reported to date outside the homosexual community or in women'" - The New York Times 11 Just five months later, in December 1981, it was clear that the disease affected other population groups, when the first cases of PCP were reported in injecting drug users.12 At the same time the first case of AIDS was documented in the UK.13
1982 HistoryThe disease still did not have a name, with different groups referring to it in different ways. The CDC generally referred to it by reference to the diseases that were occurring, for example lymphadenopathy (swollen glands), although on some occasions they referred to it as KSOI, the name already given to the CDC task force.14 15
In contrast some still linked the disease to its initial occurrence in gay men, with a letter in The Lancet calling it "gay compromise syndrome".16 Others called it GRID (gay-related immune deficiency), AID (acquired immunodeficiency disease), "gay cancer" or "community-acquired immune dysfunction".17 18
In June a report of a group of cases amongst gay men in Southern California suggested that the disease might be caused by an infectious agent that was sexually transmitted.19
By the beginning of July a total of 452 cases, from 23 states, had been reported to the CDC.20
Later that month the first reports appeared that the disease was occurring in Haitians, as well as haemophiliacs.21 22 This news soon led to speculation that the epidemic might have originated in Haiti, and caused some parents to withdraw their children from haemophiliac camps.23
The occurrence of the disease in non-homosexuals meant that names such as GRID were redundant. The acronym AIDS was suggested at a meeting in Washington, D.C., in July.24 By August this name was being used in newspapers and scientific journals.25 26 27 AIDS (Acquired Immune Deficiency Syndrome) was first properly defined by the CDC in September.28
By the beginning of July a total of 452 cases, from 23 states, had been reported to the CDC
An anagram of AIDS, SIDA, was created for use in French and Spanish.29 Doctors thought AIDS was an appropriate name because people acquired the condition rather than inherited it; because it resulted in a deficiency within the immune system; and because it was a syndrome, with a number of manifestations, rather than a single disease.30
Still very little was known about transmission and public anxiety continued to grow.
"It is frightening because no one knows what's causing it, said a 28-year old law student who went to the St. Mark's Clinic in Greenwich Village last week complaining of swollen glands, thought to be one early symptom of the disease. Every week a new theory comes out about how you're going to spread it." - The New York Times 31 By 1982 a number of AIDS specific voluntary organisations had been set up in the USA. They included the San Francisco AIDS Foundation (SFAF), AIDS Project Los Angeles (APLA), and Gay Men's health Crisis (GMHC).32 In November 1982 the first AIDS organisation, the "Terry Higgins Trust" (later known as the Terrence Higgins Trust), was formally established in the UK, and by this time a number of AIDS organisations were already producing safer sex advice for gay men.33 34
In December a 20-month old child who had received multiple transfusions of blood and blood products died from infections related to AIDS.35 This case provided clearer evidence that AIDS was caused by an infectious agent, and it also caused additional concerns about the safety of the blood supply. Also in December, the CDC reported the first cases of possible mother to child transmission of AIDS.36
By the end of 1982 many more people were taking notice of this new disease, as it was clearer that a much wider group of people was going to be affected.
"When it began turning up in children and transfusion recipients, that was a turning point in terms of public perception. Up until then it was entirely a gay epidemic, and it was easy for the average person to say 'So what?' Now everyone could relate." - Harold Jaffe of the CDC for newsweek 37 It was also becoming clear that AIDS was not a disease that just occurred in the USA. Throughout 1982 there were separate reports of the disease occurring in a number of European countries.38
Meanwhile in Uganda, doctors were seeing the first cases of a new, fatal wasting disease. This illness soon became known locally as 'slim'.39
1983 HistoryIn January, reports of AIDS among women with no other risk factors suggested the disease might be passed on through heterosexual sex.40
At about the same time the CDC convened a meeting to consider how the transmission of AIDS could be prevented, and in particular to consider the newly emerged evidence that AIDS might be spread through blood clotting factor and through blood transfusions. As James Curran, the head of the CDC task force, said:
"The sense of urgency is greatest for haemophiliacs. The risk for others [who receive blood products] now appears small, but is unknown."41 The risk for haemophiliacs was so great because the blood concentrate that some haemophiliacs used exposed them to the blood of up to 5,000 individual blood donors.
In March, the CDC stated 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 drugs; patients with haemophilia; and sexual partners of individuals at increased risk for AIDS." The same report also said,
"each group contains many persons who probably have little risk of acquiring AIDS... Very little is known about risk factors for Haitians with AIDS."42 Nevertheless, the inclusion of Haitians as a risk group caused much controversy. Haitian Americans complained of stigmatisation, officials accused the CDC of racism, and Haiti suffered a serious blow to its tourism industry.43 44 Before long people were talking colloquially of a "4-H Club" at risk of AIDS: homosexuals, haemophiliacs, heroin addicts and Haitians.45 46 Some people substituted hookers for haemophiliacs.47
In May 1983, doctors at the Institute Pasteur in France reported that they had isolated a new virus, which they suggested might be the cause of AIDS
In the UK there were public concerns about the blood supply with references in newspapers to "killer blood".48 The media more generally started to take notice of AIDS, with the screening of a TV Horizon programme, "The Killer in the Village", and a number of newspaper articles on the subject of the "gay plague".49 50
In May 1983, doctors at the Institute Pasteur in France reported that they had isolated a new virus, which they suggested might be the cause of AIDS.51 Little notice was taken of this announcement at the time, but a sample of the virus was sent to the CDC.52 A few months later the virus was named lymphadenopathy-associated virus or LAV, patents were applied for, and a sample of LAV was sent to the National Cancer Institute.53
But whilst progress was being made by scientists there was at the same time increasing concern about transmission, and not just in relation to the blood supply. A report of AIDS occurring in children suggested quite incorrectly the possibility of casual household transmission.54
AIDS transmission became a major issue in San Francisco, where the Police Department equipped patrol officers with special masks and gloves for use when dealing with what the police called "a suspected AIDS patient".
"The officers were concerned that they could bring the bug home and their whole family could get AIDS." - The New York Times 55 And in New York:
"landlords have evicted individuals with AIDS" and "the Social Security Administration is interviewing patients by phone rather than face to face." - Dr David Spencer, Commisioner of Health, New York City 56 There was considerable fear about AIDS in many other countries as well:
"In many parts of the world there is anxiety, bafflement, a sense that something has to be done - although no one knows what." - The New York Times 57 As anxiety continued, the CDC tried to provide reassurance that children with AIDS had probably acquired it from their mothers and that casual transmission did not occur:
"The cause of AIDS is unknown, but it seems most likely to be caused by an agent transmitted by intimate sexual contact, through contaminated needles, or, less commonly, by percutaneous inoculation of infectious blood or blood products. No evidence suggests transmission of AIDS by airborne spread. The failure to identify cases among friends relatives, and co-workers of AIDS patients provides further evidence that casual contact offers little or no risk [...] the occurrence in young infants suggests transmission from an affected mother to a susceptible infant before, during, or shortly after birth."58 Reports from Europe suggested that two rather separate AIDS epidemics were occurring. In the UK, West Germany and Denmark, the majority of people with AIDS were homosexual, and many had a history of sex with American nationals. However in France and Belgium AIDS was occurring mainly in people from Central Africa or those with links to the area.59
Examples of this second epidemic included a number of previously healthy African patients who were hospitalised in Belgium with opportunistic infections (such as PCP and cryptosporidosis), Kaposi's sarcoma, or other AIDS-like illnesses. All of these Africans had immune deficiency similar to that of American AIDS patients. However they had no history of blood transfusion, homosexuality, or intravenous drug abuse.60 In light of such reports, European and American scientists set out to discover more about the occurrence of AIDS in Central Africa.
By this time, doctors working in parts of Zambia and Zaire had already noticed the emergence of a very aggressive form of Kaposi's sarcoma. This cancer was endemic in Central Africa, but previously it had progressed very slowly and responded well to treatment, whereas the new cases looked very different and were often fatal.61 62
In September the CDC published their first set of recommended precautions for health-care workers and allied professionals designed to prevent "AIDS transmission".63 In the UK, people who might be particularly susceptible to AIDS were asked not to donate blood.64
In October, the first European World Health Organisation (WHO) meeting was held in Denmark. At the meeting it was reported that there had been 2,803 AIDS cases in the USA.65
That meeting was followed in November by the first meeting to assess the global AIDS situation. This was the start of global surveillance by the WHO and it was reported that AIDS was present in the U.S.A., Canada, fifteen European countries, Haiti and Zaire as well as in seven Latin American countries. There were also cases reported from Australia and two suspected cases in Japan.66
By the end of the year the number of AIDS cases in the USA had risen to 3,064 and of these 1,292 had died.67
1984 HistoryAt the CDC researchers had been continuing to investigate the cause of AIDS through a study of the sexual contacts of homosexual men in Los Angeles and New York. They identified a man as the link between a number of different cases and they named him "patient O" for "Out of California".68 The research appeared to confirm that AIDS was a transmittable disease, and the co-operation of "patient O" contributed to the study.69
However a problem arose when other people read the scientific paper.
"I called this guy Patient O... But my colleagues read it as Patient Zero." - Darrow for Newsweek 70 And so in March 1984 the myth of Patient Zero began.71 See 1987 for more information about Patient Zero.
Just one month later, on April 22nd, Dr Mason of the CDC was reported as saying:
"I believe we have the cause of AIDS." He was referring to the French virus, LAV, and he was basing his opinion on the findings made in the preceding weeks by the researchers at the Pasteur Institute who had discovered the virus the previous year.72
Margaret Heckler
Just one day later, on April 23rd, the United States Health and Human Services Secretary Margaret Heckler announced that Dr. Robert Gallo of the National Cancer Institute had isolated the virus which caused AIDS, that it was named HTLV-III, and that there would soon be a commercially available test able to detect the virus with "essentially 100 percent certainty". It was a dramatic and optimistic announcement that also included:
"We hope to have a vaccine [against AIDS] ready for testing in about two years." And it concluded with:
"yet another terrible disease is about to yield to patience, persistence and outright genius".73 74 The same day patent applications were filed covering Gallo's work, but there was clearly a possibility that LAV and HTLV-III were the same virus.75 76 The scientific papers regarding Gallo's discovery of HTLV-III were published on 4th May.77 By 17th May, private companies were already applying to the Department of Health & Human Services for licences to develop a commercial test, which would detect evidence of the virus in blood, a test which it had already been said would be used to screen the entire supply of donated blood in the USA.78 79
Meanwhile there continued to be concern about the public health aspects of AIDS. This was particularly the case in San Francisco where all the gay bath houses and private sex clubs were closed. Some gay men regarded the closures as an attack on their civil rights. But Mervyn Silverman, Director of the San Francisco Department of Public Health stated the public health view as follows:
Dr Robert Gallo
"There are certain places where things are allowed and certain places where they are not. You can't have sex at the McDonald's. You generally cannot have sex in the pews of a church or in a synagogue. People don't feel their civil liberties are being in any way abrogated because of that."80 Researchers who had visited Central Africa in late 1983 reported they had identified 26 patients with AIDS in Kigali, Rwanda, and 38 in Kinshasa, Zaire. The Rwandan study concluded that, "an association of an urban environment, a relatively high income, and heterosexual promiscuity could be a risk factor for AIDS in Africa".81 The Zairian study found there to be a "strong indication of heterosexual transmission".82
In light of these findings the Zairian Department of Public Health, in collaboration with American and European scientists, launched a national AIDS research programme called Project SIDA.83
By the end of 1984, there had been 7,699 AIDS cases and 3,665 AIDS deaths in the USA, and 762 cases had been reported in Europe.84 85 In the UK there had been 108 cases and 46 deaths.86
1985 HistoryIn January 1985 a number of more detailed reports were published concerning LAV and HTLV-III, and by March it was clear that the viruses were the same.87 The same month the U.S Food and Drug Administration (FDA) licensed, for commercial production, the first blood test for AIDS. The test would reveal the presence of antibodies to HTLV-III/LAV, and it was announced that anyone who had antibodies in their blood would not in future be allowed to donate blood.88
There were a number of social and ethical issues, as well as certain medical matters, that had to be considered before the new test could be used even to ensure the safety of the blood supply. And even more aspects needed to be considered before the test could be more widely used. Concern particularly centred on issues of confidentiality and the meaning of a positive test result.89 90
"Richard Dunne, director of the Gay Men's Health Crisis, said that the group would not object to the wider availability of the procedure provided that certain safeguards were assured: informed consent, good counselling and confidentiality, 'which means anonymity,' he said. He stressed that the city must prevent insurance companies, employers, schools and others from gaining access to test results." - The New York Times 91 The first small-scale needle and syringe exchange project had been started in 1984 in Amsterdam, the Netherlands, but more projects were started in 1985 as a result of growing concerns about HTLV-III/LAV.92
In April more than 2000 people attended the first international Conference on AIDS held in Atlanta. Three major topics of discussion were the new HTLV-III/LAV test, the situation with regard to AIDS internationally, and the extent of heterosexual transmission.93
"Some experts are sceptical that AIDS will spread as rapidly among heterosexuals as it has among homosexuals. Yet other experts, taking their cues from data emerging from preliminary studies from Africa showing equal sex distribution among males and females, are less sure." - The New York Times 94 Immediately after the conference, the World Health Organization (WHO) organized an international meeting to consider the AIDS pandemic and to initiate concerted worldwide action.95
Meanwhile in many countries there was a separate "epidemic of fear" and prejudice.96
In the UK tabloid press, AIDS gained many headlines and caused alarm among the public. In some newspapers, the prejudice was obvious. The haemophiliacs were seen as the "innocent victims" of AIDS whereas gays and drug-users were seen as having brought the disease upon themselves.97 The fear of AIDS caused firemen to ban the kiss of life, and caused holidaymakers to cut their holiday short for fear of contracting AIDS from an HTLV-III positive passenger on the Queen Elizabeth 2.98 99 A 9-year old HTLV-III positive haemophiliac was allowed to attend the local school, but some of the pupils where kept home by anxious parents.100
In the US, it was feared that drinking communion wine from a common cup could transmit AIDS, and Ryan White, a 13-year old haemophiliac with AIDS, was barred from school.101 102
"In 1985, at 13, Ryan White became a symbol of the intolerance that is inflicted on AIDS victims. Once it became known that White, a haemophiliac, had contracted the disease from a tainted blood transfusion, school officials banned him from classes." - Time Magazine 103 The CDC removed Haitians from their list of AIDS risk groups, in light of information that suggested both heterosexual contact and exposure to contaminated needles played a role in transmission.104
On September 17th, President Reagan publicly mentioned AIDS for the first time, when he was asked about AIDS funding at a press conference. At the same press conference he was also asked a question whether he would send his children if they were younger to school with a child who has AIDS.
"It is true that some medical sources had said that this cannot be communicated in any way other than the ones we already know and which would not involve a child being in the 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." - Ronald W. Reagan 105 Drugs such as ribavirin, thought to be active against HTLV-III/LAV, were being smuggled from Mexico into the USA.106
The actor Rock Hudson died of AIDS on October 3rd 1985. He was the first major public figure known to have died of AIDS.107
All UK blood transfusion centres began routine testing of all blood donations for HTLV-III/LAV in October.108
For the Global Surveillance of AIDS, the WHO had initially used the definition of AIDS as developed in the USA in 1982. But this definition was difficult to use in developing countries where there was a lack of sophisticated laboratory tests. So in order to help with the surveillance of AIDS, particularly in Africa, a new WHO definition was adopted in October. This definition of AIDS became known as the Bangui definition.109
Towards the end of the year, Western scientists became much more aware of the "slim disease" that had become increasingly common in South West Uganda since 1982. Studies found that most cases were among promiscuous heterosexuals, the majority of whom tested positive for antibodies to HTLV-III/LAV. The site and timing of the first reported cases suggested that the disease arose in neighbouring Tanzania. Some scientists who studied slim concluded: "Although slim disease resembles AIDS in many ways, it seems to be a new entity."110 . However, others thought differently:
"[Evidence] suggests that slim disease cannot be distinguished from AIDS and ARC [AIDS related complex] by extreme weight loss and diarrhoea. Thus slim disease may not be a new syndrome but simply identical with AIDS as seen in Africa."111
In December 1985, the Pasteur Institute filed a lawsuit against the National Cancer Institute to claim a share of the royalties from the NCI's patented AIDS test.112
During the year, knowledge of transmission routes was to change again, when the first report appeared of the transmission of the virus from mother to child through breast feeding.113 The first case of AIDS was also reported in China, and AIDS had as a result been reported in every region in the world.114
By the end of 1985, 20,303 cases of AIDS had been reported to the World Health Organisation.115 In the USA 15,948 cases of AIDS had been reported,116 and in the UK 275 cases.117
1986 HistoryThe first UK needle exchange scheme started in Dundee in February.118
In the UK, the government launched, in March, the first public information campaign on AIDS, with the slogan "Don't Aid AIDS". There were a series of advertisements in national newspapers.119
There was still at this time disagreement about the name of the virus.
"The name of the virus had itself become a political football as the French insisted on LAV (lymphadenopathy-associated virus), while Gallo's group used HTLV-3 (human T-cell lymphotropic virus, type 3)." - Time Magazine 120 In May 1986, the International Committee on the Taxonomy of Viruses ruled that both names should be dropped and the dispute solved by a new name, HIV (Human Immunodeficiency Virus).121
At the opening speech of the International Conference in Paris, held from 23rd to 25th June 1986, Dr H Mahler, the Director of WHO, announced that as many as 10 million people worldwide could already be infected with HIV.122
In August, the USA Federal Government accused an employer of illegal discrimination against a person with AIDS for the first time. A hospital had dismissed a nurse and refused to offer him an alternative job. This was seen as a violation of his civil rights.123
In September there was dramatic progress in the provision of medical treatment for AIDS, when early results of clinical tests showed that a drug called azidothymidine (AZT) slowed down the attack of HIV. AZT was first synthesised in 1964 as a possible anticancer drug but it proved ineffective.
The AZT clinical trial divided patients into two groups: one received AZT and the other received placebo, or dummy drugs. At the end of six months, only one patient in the AZT group was dead, whilst there were 19 deaths among the placebo group. The clinical trial was stopped early, because it was thought to be unethical to deny the patients of the placebo groups a better chance of survival.124
"The announcement set off a flurry of excitement and controversy. AIDS hotlines and doctors' offices were flooded with calls, community leaders warned about undue optimism, and doctors debated the ethical and medical issues raised by the early cancellation of the AZT study." - Time Magazine 125 In the United States, the Surgeon General's Report on AIDS was published. The report was the Government's first major statement on what the nation should do to prevent the spread of AIDS. The "unusually explicit" report urged parents and schools to start "frank, open discussions" about AIDS.126
By this time, scientists had accumulated enough evidence to form an overview of AIDS in Africa. Studies of medical records showed there had been marked increases in a number of AIDS-related conditions during the late 1970s and early 1980s. In particular:
Slim disease in Kinshasa, Zaire (late 1970s) Slim disease in Uganda and Tanzania (early 1980s) Esophagel candidiasis in Rwanda (from 1983) Aggressive Kaposi's sarcoma in Kinshasa, Zaire (early 1980s) Aggressive Kaposi's sarcoma in Zambia and Uganda (from 1982 and 1983) Crypotococcal meningitis in Kinshasa, Zaire (late 1970s to early 1980s). In conclusion:
"These studies suggested that while isolated cases of AIDS may have occurred in Africa earlier, it was probably rare until the late 1970's and early 1980's, a pattern similar to that in the United States and Haiti."127 As in developed countries, AIDS in Africa was found to primarily affect young and middle-aged people, especially those who were unmarried. The sex and age distributions were seen to reflect other sexually transmitted diseases, and the major transmission routes had been identified:
"Available data suggest that heterosexual activity, blood transfusions, vertical transmission from mother to infant, and probably frequent exposure to unsterilized needles account for the spread of HIV infection and AIDS in Africa."128 HIV and AIDS had also been detected in India, among sex workers in the southern state of Tamil Nadu, igniting fears that the disease would soon spread across the subcontinent. In response, the Indian government decided to increase the number of HIV testing centres and improve the screening of blood donations.129
By the end of the year, 85 countries had reported 38,401 cases of AIDS to the World Health Organisation. By region these were: Africa 2,323, Americas 31,741, Asia 84, Europe 3,858, and Oceania 395.130./by Annabel Kanabus and Jenni Fredriksson.