10 persistent HIV myths we need to move past to break the stigma of the disease

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Alice Howarthhttps://dralice.blog/
Dr Alice Howarth is a research academic working in pharmacology and therapeutics at the University of Liverpool. She is vice president of the Merseyside Skeptics Society, has written for The Guardian, Breast Cancer Now and is co-host of the skeptical podcast Skeptics with a K. In August 2020 Alice took on the role of deputy editor for The Skeptic.

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It’s a Sin, the TV show written by Russell T. Davies about the early days of the AIDS crisis in the early 80s, is a beautiful piece of television. For me, as a child of the 90s, It’s a Sin does an especially great job of portraying a range of emotions, beliefs and reactions that people living through those early days must have encountered as news of the illness sweeping predominantly through the gay community spread through the media and other sources.

As someone who has a special interest in how we communicate science and how that influences the reactions of people particularly when it comes to their health, I find that information vacuum especially interesting. In those days, of course, you couldn’t Google for information on the new virus that’s causing chaos. Today, during COVID, we see some of the problems caused by the ease of access to information, misinformation and disinformation and how that can lead to belief in conspiracies, yet It’s a Sin perfectly illustrates how a lack of information can also lead to the same belief in those conspiracies, with a monologue from Ritchie – one of the main characters – about how this disease can’t possibly exist because viruses can’t distinguish between sexualities.

In the 2020s, we can also correct our mistakes pretty quickly. Looking at the example of COVID, we now have widespread use of face masks, but you might recall early on in the pandemic, expert advice at the time was against face mask use. We’ve learned more, corrected the advice, and moved on.

When it comes to the HIV pandemic, our last most recent pandemic, it’s clear that correcting mistaken messaging from those early days has been much slower. Still, four decades later, we are left with misinformation and misunderstandings around HIV and AIDS.

So, here are ten myths relating to HIV and AIDS.

Myth 1: HIV and AIDS are synonyms.
Truth: HIV and AIDS are related but different.

HIV is the virus. Human Immunodeficiency Virus (HIV) has two known types: HIV-1 and HIV-2. When HIV enters the body it enters cells of the immune system and starts to make copies of itself. It also causes death or damage of those immune cells. If it succeeds in causing the death of a lot of immune cells, it causes an acquired immunodeficiency syndrome: AIDS.

Understanding the difference between these two terms is important.

A person with HIV can live a long healthy life with relatively few consequences. Of course, living with HIV is not easy: you must take medications, which may have some side effects, and you must undergo regular testing to make sure your treatment is working. And then there is the stigma. Unfortunately, there is still a lot of stigma for people living with HIV, a lot of it a hangover from how we handled things in those early days. But clinically, if you know your status and have access to medication, living with HIV is relatively straight forward. Many people with HIV will go on to live a long and healthy life.

AIDS, is a serious condition which increases the susceptibility to a wide range of infections and ultimately leads to deaths like those seen in It’s a Sin. Once the immune system is damaged so significantly, even the common cold can be deadly. It’s a Sin showed examples of people developing a rare form of cancer called Kaposi’s sarcoma which causes brown spots or lesions to grow on the skin. Kaposi’s sarcoma is one of the few cancers we know of that is caused by a virus. It’s not caused by HIV, it’s caused by another virus, one that people with AIDS lose the ability to fight off. 

A still from It's a Sin - Ritchie's boyfriend Donald lays on the bed looking into the eyes of Ritchie. The actor who plays Donald, Nathanial Hall, is HIV positive and discusses his status proudly to help promote HIV acceptance.
Ritchie’s boyfriend Donald is proudly played by HIV positive actor Nathanial Hall.

Myth 2: you would know if you or someone else had HIV.
Truth: most people living with HIV have no symptoms.

Even without treatment HIV infection has a stage called the latency stage. This stage can last a decade or more and in that stage the virus is active and transmissible but it is replicating at a slow pace and hasn’t overwhelmed the system. A person who has HIV in the latency stage feels pretty normal; they have no obvious symptoms.

Myth 3: you would have no indication if you became infected with HIV.
Truth: different stages of HIV infection come with mild to moderate symptoms.

There are some things that can indicate HIV presence in the body. Firstly – when a person first encounters the virus, their body recognises the infection and starts to fight it off. In the first few days of infection a person might feel a little under the weather. This is called the acute phase and at this stage a person would have a lot of virus in their system and are very infectious. They might have flu like symptoms. They might feel fine.

Within a few weeks this stage progresses to the latent stage and the symptoms abate. But the longer you live with the virus the more likely you are to start to get little niggly symptoms of problems with your immune system. You might start to get some rashes and joint and muscle aches; you might get a fever or lose some weight. All symptoms that we all regularly encounter – there isn’t really a unique sign that points specifically to HIV infection, but it also isn’t totally invisible either.

Myth 4: you must stay away from people with HIV.
Truth: transmission of HIV requires very specific circumstances.

A still from It's a Sin - Jill dons pink rubber gloves in the early days of the pandemic while she's helping to care for Gloria.
Jill didn’t need the pink rubber gloves to help care for Gloria, but we weren’t clear of this when HIV was first identified.

In the early days when we first discovered the virus, we didn’t really know how it was passed on. But we did know other viruses could be passed on by contact or even close proximity, just like COVID.

We now know that the virus is passed on through bodily fluids. But not just any fluids. You can’t catch HIV just from being close to someone living with HIV, but you also can’t catch it by kissing them – even if you exchange saliva, nor can you catch it from sharing drinks or even just touching their blood should you need to help them in a medical emergency.

HIV isn’t an easy infection to pass on. Usually, it requires the contact of a fluid carrying the virus, either with a cut or wound on the skin of another person, or with a mucus membrane like the walls of the vagina or rectum which are thinner and allow the virus to pass through, or of course directly with the blood stream if you are sharing needles or receive blood.

Myth 5: once you’ve been exposed to HIV, there’s nothing you can do but wait and find out if you have the virus.
Truth: acting fast post-exposure is important and can be protective.

Although we can’t cure HIV once it’s made itself at home in the body, if you act quickly when you think you might have been exposed there are medical options to help prevent the virus settling in. Post-exposure prophylaxis (or PEP) is medication that is taken every day for 28 days after HIV exposure. It doesn’t always work, and it’s more likely to work the sooner you take it after exposure – ideally within 24 hours and no more than 72 hours but if you think you’ve been exposed it’s an option.

Myth 6: if you have HIV you can never ever have unprotected sex ever again.
Truth: risk management relies on communication and information.

The transmission I’ve discussed so far is transmission from someone who is living with untreated HIV, or treated HIV where the viral load isn’t fully under control yet. But these days, the goal of treatment is to get the viral load in the system so low that it is undetectable. We know the virus hides, and it never truly goes away (there are only a couple of known cases where the virus has 100% left the system and those rely on some pretty unusual circumstances) but if we can’t detect it, if it is undetectable, then it is effectively untransmissible.

Engaging in safer sex is always preferable because of the risk of other sexually transmitted infections and unwanted pregnancy, but if you’re in a committed relationship with someone or someones you trust then you can all make an informed decision together on how to engage with accurate information on the risk of transmission and personal information of your own circumstances and goals.

Myth 7: condoms or abstinence are the only ways to protect yourself from HIV.
Truth: undetectable = untransmissible.

There is medication called pre-exposure prophylaxis or PrEP which can be taken immediately before sexual contact if you are at risk. Currently in England this is mainly available if your sexual partner is living with HIV but there is a trial underway that makes the medication available for people who might have sex that is at greater risk of transmission. Again, this has no effect on other sexually transmitted infections so you probably still want to use a barrier method of protection.

Myth 8: it only affects gay people.
Truth: risk varies based on the type of sex, not sexuality.

There are some sexual activities that are at greater risk for HIV transmission if one of the parties carries the virus. That includes penis-in-anus sex which means that the highest risk group is men who have sex with men but penis-in-anus sex isn’t exclusive to men who have sex with men, nor do all men who have sex with men take part in this particular type of sex. Plenty of women are diagnosed with HIV infection each year and penis-in-vagina sex does carry risk of transmission. Sex between two women has the lowest risk, though there have been a few instances of infection this way recorded too.

Myth 9: people with HIV can’t have children by pregnancy.
Truth: risk of transmission between father and mother, and mother and baby can be managed medically.

Although there is a transmission either between partners or from mother to infant at every stage of child bearing: conception, pregnancy, child birth and breast-feeding, we are now able to manage this medically to prevent transmission either between partners or from mother to child.

Myth 10: it’s better if I just don’t think about it.
Truth: knowing your HIV status can save lives.

Best-case scenario, should you contract HIV, is that you know about it, and you know about it early. HIV is not a death sentence if you know you have it. It is treatable. With treatment your risk of transmission to others is hugely reduced. Decades of research have given us good medical options that mean many people living with HIV have long, healthy, happy lives.

There’s always more we can do, especially to help vulnerable or marginalised groups but we’re in a strong place scientifically. The trick is to be informed and to get tested regularly.

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