The Battle Against HIV May Have Changed But We Still Have Vital Work to Do
By Zoe Schulz, myGwork
HIV (Human immunodeficiency virus) is a virus that weakens your immune system, if untreated it can make it increasingly difficult for you to fight everyday infections and diseases. Today, an HIV diagnosis is not a death sentence, but a manageable long-term condition. With treatment, people living with HIV can reduce the level of the virus in their body to undetectable, meaning they cannot pass the virus on (even through unprotected sex) and will live a long and healthy life. Despite this, there is still a huge amount of misinformation surrounding the virus, meaning that although an HIV diagnosis does not come with a death sentence, it does come with a heavy amount of stigma and discrimination. It is one of the only illnesses where the stigma can be more deadly than the illness itself, but through education, we can and must change this. Thanks to modern medical advancements, a world without HIV is now a tangible possibility, something that couldn’t have been dreamed of even a few decades ago. However, for this to become a reality, we have to fight the cloud of discrimination and misinformation that follows the virus.
It is thought that the HIV virus first appeared in humans around the 1920s, however it wasn’t until the 1980’s that the world began to notice. By this time, it had already spread across five continents and it’s estimated that up to 300,000 people could have already been infected. In 1981, the centres for Disease Control and Prevention (CDC) reported five healthy homosexual men becoming infected with a strain of pneumonia that they would not normally see in someone with an uncompromised immune system. A year later, The New York Times published an article about a new immune system disorder which had infected 335 people, killing 136 of them. They noted that it was mainly homosexual men affected and hence labelled the disease gay-related immune deficiency, or GRID. Shortly after, a journalist asked President Reagan’s Press Secretary about what she called the “gay plague” to which his response was laughter. By 1984 scientists had discovered the cause of AIDS to be HIV and licensed the very first HIV blood test by 1985, a small but important step in what would be a long battle against the virus.
That same year saw the rise of one of the first HIV activists, Ryan White, an Indiana teenager with AIDS who was banned from his school over fear of other students catching it. He spent his life speaking out against HIV stigma, but tragically died at the age of eighteen. By 1987 over 40,000 people had died from AIDS, yet it still seemed as though very little was being done to address the new virus. This is what fuelled the group ACT UP to form and they began to organise public demonstrations in the hope of bringing attention to an epidemic that was wiping out their community. HIV disproportionately affected gay men, trans people, people of colour, sex workers and drug users, this was used to spur discrimination and stigma against those infected with the virus. That same year AZT became the first available treatment for HIV, although it did not cure the virus only slowed it down. We now also know that the dosage many people were given of AZT is highly toxic with severe long-term side effects. ACT UP continued to work to put pressure on the government to speed up their response to the crisis. Avram Finkelstein, one of the artists of the ACT UP poster “Silence=Death,” wrote in a post for the New York Public Library "In 1981, my soul mate started showing signs of immunosuppression, before AIDS even had its name. By 1984, he was dead, a year before Rock Hudson had been outed by the disease and died, and Reagan had uttered the word. This private devastation compelled me to form a collective with two of my friends." By 1995, AIDS was the single biggest killer of men aged 25-44 in America and millions around the world had been infected. Later that year the first effective treatment to halting the virus was released and lay a pathway for people living with HIV to survive. However, by then the public opinion of HIV had been cemented, engrained with homophobia, biphobia and transphobia.
Since then, medical advancements have come leaps and bounds. Treatments that were only dreamed of back then are highly effective and allow people with the virus live long healthy lives. On top of this, we have developed new tools which have allowed HIV campaigns, activists and health workers to create a tangible roadmap to creating a world with zero HIV transmissions. With reaching zero HIV transmissions now being a question of when as opposed to if. Among these new tools is PrEP, which when taken correctly can prevent someone who is HIV negative from contracting the virus when exposed. This was a gamechanger first discovered in 2005 that works by using the same medication that treats HIV. Taking PrEP means that there is enough of the drug in your body to block HIV if you are exposed to it and is a simple way for someone who might be at risk of contracting the virus to protect themselves and take control of their sexual health. The argument for making PrEP accessible and affordable to all who wished to take it is a no-brainer, from a morality and economic view; not only can it stop people contracting HIV, but it will save the government millions in HIV treatment. However, making PrEP accessible was not as easy as it should have been, with many labelling it “reckless sex drug” and blocking its availability. Many of the arguments we’ve seen used against PrEP mirror that of which we saw used against the contraceptive pill in the 1960s, which in hindsight is easy to see came from a place of misogyny just as the resistance to PrEP was rooted in homophobia. Despite this, HIV organisations have worked tirelessly to combat this and in the UK it was made readily available on the NHS earlier this year. Although a useful tool, PrEP alone won’t reduce transmissions of HIV to zero. However, when used alongside widespread rapid testing and ensuring everyone who is HIV positive is on effective treatment, zero transmissions becomes a reachable goal, one the UK government has committed to reach by 2030. Matt Hancock, MP spoke of the commitment in January 2019 “We’re setting a new goal: eradicating HIV transmission in England by 2030. No new infections within the next decade. Becoming one of the first countries to reach the UN zero infections target by 2030.” However, Ian Green, Terrence Higgins Trust CEO says a lot more is needed if we are to get there, he explains “We have the necessary tools to end transmissions but we need to maximise these across all groups affected by HIV right across the UK to ensure that no-one is left behind.”
Although medical advancements have come leaps and bounds since the ’80s, the public education on HIV sadly has not. A recent survey by YouGov showed that one in five British people still believe HIV can be transmitted by kissing, plus 30% believe you can catch it by sharing a toothbrush with someone who is HIV positive. On top of this, less than 30% knew that someone who is HIV positive and on effective treatment cannot pass on the virus. Ian Green explains “We’ve come a long way since the AIDS crisis first emerged, when the nation was gripped by panic and fear. Thankfully, we now know far more about how HIV is and is not transmitted, and medical advances now mean HIV doesn’t have to stand in the way of living a long and healthy life. But it’s not over – while science has moved on, we can see today that inaccurate myths from the 1980s are still deeply entrenched in society, both in terms of how HIV is transmitted, and what it’s like to live with HIV. Misunderstanding of the virus can fuel stigma and cause immense distress for people coming to terms with an HIV diagnosis.”
These outdated beliefs that many still hold around HIV result in a huge amount of stigma and discrimination around the virus. This stigma stops people from testing and creates fear around a virus that is treatable if you know you have it. It also makes life much harder for those living with HIV, putting further strain on relationships and mental health. An anonymous person living with HIV shared with the National AIDS Trust that “to have HIV is also to know one’s fair share of isolation and marginalisation within a society that blames us, to begin with, for having it.” If everyone that has HIV knows they have HIV, then those people can take effective treatment to ensure they don’t pass it on to anyone else, therefore stopping transmission. However, when stigma prevents people from testing and finding out their status, they can unknowingly pass on the virus. This is why fighting stigma is so vital in the fight against HIV. Ian Green explains “The medical progress in the fight against HIV has been incredible but stigma remains a huge barrier standing in the way of ending transmissions once and for all. That’s why work to update the public’s knowledge of HIV is just as important as access to condoms, self-tests on the high street shelves and fighting for PrEP access. We also need to get the basics right and that starts with teaching young people about HIV in schools.”
Defeating HIV is now more about politics and education than it is science; we have the tools we just need to make sure we use them. LGBTQ+ history and the fight against HIV will be forever be intertwined and we cannot forget the people who stood up against a tirade of homophobia, biphobia and transphobia in the ’80s and ’90s, as without them we would not have made the scientific advancements that we have and this in turn helped fuel a fight for wider LGBTQ+ rights. From the very beginning, the fight against HIV has been simultaneously a fight against homophobia, transphobia and racism. We cannot go back and change things for those who lost their lives in the early battle against HIV, but we can make sure no more people needlessly die. Stigma and misinformation can also be deadly, which is why the importance of education is not to be underestimated. Treatment, PrEP and testing only work when people have affordable access to them, therefore we must all make a commitment to ensuring this is possible not just in our own backyard, but globally.
