The Past and Present of AIDS

The 1970s was a significant time for gay rights across the world, but most notably in the United States. The Stonewall riots of 1969, in response to discrimination and harrassment of the gay community in New York, galvanised the international gay rights movement and increased its visibility and activism. The first Gay Pride parade was held in 1970, on the anniversary of Stonewall. Many LGBT individuals made it into public office. Most famously was Harvey Milk, who was elected to the San Francisco Board of Directors in 1978, and the first openly gay man elected to office in California. Milk asked gay artist and activist Gilbert Baker to create a symbol for the growing movement, unveiled at a Pride parade in 1978 - the now iconic rainbow flag.

These successes met with pushback against the gay community, with anti-gay legislation passed through in many cities and states across the country. One infamous example was the ‘Save Our Children’ campaign, led by Anita Bryant, which led to the overturn of a ban on discrimination for housing and employment based on sexual orientation. Unfortunately, it was in this climate that the AIDS epidemic broke out during the early 1980s in the United States.

Clusters of previously healthy young men in Los Angeles, San Francisco and New York, amongst others, began to die from rare illnesses not previously thought to be dangerous, and certainly not deadly. One common example was a rare cancer known as Kaposi’s Sarcoma (KS), a harmless, incredibly slow progressing cancer that only affects two people in every three million Americans. However, in these young men the cancer was extremely aggressive, leaving painful, purple lesions all over the body. If it reached vital organs, patients died very early. Two themes became apparent. Firstly, it appeared that only homosexual men were affected. Secondly, their immune systems were severely compromised.

“As HIV copies itself it makes mistakes, and this constantly changes the way it appears in the body”

In 1982, the Centre for Disease Control and Prevention (CDC) officially termed the condition Acquired Immunodeficiency Syndrome (AIDS). It would be another two years before scientists figured out what caused it - the Human Immunodeficiency Virus (HIV). Andrew Leigh-Brown is the Professor of Evolutionary Genetics at the the University of Edinburgh, and began working on HIV in the 1980s. “HIV is one of a large group of retroviruses - those are RNA encoded viruses which have a high mutation rate”. This makes them masters at evading the immune system. As HIV copies itself it makes mistakes, and this constantly changes the way it appears in the body. Instead of regular doublestranded DNA, retroviruses contain single-stranded RNA - essentially a blueprint for their own reproduction.

Once inside the cell, HIV uses clever enzymes to convert this blueprint into DNA in a process called reverse transcription, hence the name - retro means backwards in Latin. The DNA then integrates into the host cell’s genome, turning it into a virus replication factory. HIV is so damaging because it “infects the critical cells of the immune system, which have a role in amplifying immune responses to other infections” says Leigh-Brown. These are known as CD4, or T-helper cells, which detect invaders and rally an immune response. When HIV infects CD4 cells, they are put out of action and eventually die. If the CD4 cell count falls below 200 per millilitre of blood, the immune response is “no longer sufficient to keep other infections at bay”.

The fear and misunderstanding that surrounded AIDS further marginalised the gay community. At first “they didn’t call it AIDS, they called it GRIDS - Gay Related Immunodeficicency Syndrome, because at that time it was seen as something that just affected gay men” says Robert Pollock, volunteer coordinator at Waverley Care, Scotland’s first HIV charity.

“As is often the case, stigma led to discrimination. In the early years, people would refer to AIDS as the ‘gay plague’. Patients were turned away from hospital doors”

“When we talk about HIV we talk about a... group made up of gay men, intravenous drug users, sex workers. They're already marginalised and stigmatised, and on top of that you're sticking HIV into the mix.” As is often the case, stigma led to discrimination. In the early years, people would refer to AIDS as the ‘gay plague’. Patients were turned away from hospital doors. A few in the faith community called AIDS sufferers an “abomination”, reflecting the insistence of some prominent religious figures that homosexuality is sinful.

Despite the increasing number of AIDS related deaths, a knowing silence fell upon the world’s governments. It took the mayor of New York, at the epicentre of the epidemic, two years to acknowledge the existence of AIDS. It took the US President Ronald Reagan even longer, by which time 20,000 Americans had died, while his administration joked with the press about the ‘gay plague’ and downplayed the seriousness of the crisis.

When governments finally acknowledged the crisis, the resulting national awareness campaigns were often homophobic, fear-mongering, moralistic, or simply misdirected. One advert in a 1985 issue of pop science magazine Discover stated “AIDS … is now –and is likely to remain –largely the fatal price one can pay for anal intercourse.” Other adverts endorsed celibacy or monogamy. In the UK, the national TV campaign saw AIDS represented as a gigantic tombstone. The message of these campaigns was clear: AIDS is a death sentence, especially if you’re gay. It took more than 10 years for an effective treatment for HIV to be developed, but the gay community had to fight for it.

The AIDS Coalition To Unleash Power (ACT-UP), an international movement that began in the United States, was a response to the apparent lack of urgency from governments and drug companies. “The activists were pushing research on drugs, which wasn’t happening in the 1980s to any great extent” says Leigh-Brown, who recalls the protests he witnessed at AIDS conferences at the time, and the positive direction in which the ACT-UP movement pushed the research. “Many of the individuals, some of whom I got to know, were extremely intelligent and, basically, educated themselves in virology to understand what was happening.” The pressure from activists expedited the discovery in 1996 of an effective treatment, and made HIV the first virus to be successfully countered by a drug.

The treatment is known as Combination Therapy. Some referred to the treatment with multiple drugs as the ‘AIDS cocktail’, each one targeting a specific part of the retroviral life-cycle. Pollock described the new treatment as a pivotal moment in the fight against HIV. “That's when people started living longer, and stopped dying of HIV related illnesses. [Now] people don't typically go on to develop AIDS because treatment is so effective"

“Unfortunately, the stigma from the 1980s and 1990s, bolstered by poorly thought out national campaigns and damaging rhetoric, has left its mark today”

Unfortunately, the stigma from the 1980s and 1990s, bolstered by poorly thought out national campaigns and damaging rhetoric, has left its mark today. "When you talk to someone living with HIV, most people would say the challenge in 2019 is stigma” says Pollock. Not only stigma from wider society, but the internalised stigma felt by people recently diagnosed. “It can be quite an isolating illness” says Pollock, and as a result, depression is twice as common in those with HIV than the general population. “The main thing we support people with when they use our services, in addition to HIV, is probably their mental health."

If we can fight that stigma, then it is more likely that people will go and get tested and treated, and partners who are at risk of contracting HIV can take preventative treatment known as PreExposure Prophylaxis (PrEP) which is available on the NHS in Scotland, and undergoing trials in England. “In terms of reaching a large number of individuals, availability of PrEP on the NHS has been really important in Scotland” says Leigh-Brown.

Extending this to the rest of the UK would push towards the UN 90-90-90 goal (already achieved by Scotland), which aims to have 90% of those with HIV diagnosed, 90% of those people receiving treatment, and 90% of those people undetectable for the virus, and therefore non-infectious. Fighting stigma cannot be done overnight. However, if stigma is ultimately about our perception, then we can all do our bit to educate ourselves about HIV and AIDS. We need to leverage the influence of HIV positive role models, such as Welsh rugby legend Gareth Thomas, who is thriving despite his diagnosis, and arguably at the peak of his fitness. Those with HIV can live long and healthy lives, and not just survive, but thrive.

Originally published in Edinburgh University Science Magazine, Issue 25: What Science Got Wrong Illustration by Karolina Zięba