I will never forget Regina.* She taught me that HIV stigma is still rife and very, very dangerous. She was a 40-year-old Ugandan woman who came to my clinic in 2013 with a nasty bout of genital herpes. She agreed to an instant HIV test which came back positive. We talked about HIV. Her kids ― aged 11 and 9. Her job. And how knowing her result meant we could get her on treatment and give her a future.
She left. She didn’t come to her follow-up appointment. I called her. I texted her. I wrote a letter via recorded delivery pleading with her to attend. But she didn’t come. Six months later she turned up in Accident and Emergency after a seizure. A CT scan showed a HIV-related brain tumour and a week later, she died.
Regina’s case is not a one off. And it’s a stark reminder of how HIV stigma is literally costing lives. Fear of people discovering you are positive and being ostracised as a result continues to push people into a toxic, life-threatening denial. The WHO says fear of stigma and discrimination are the main reasons why people are reluctant to get tested, disclose their HIV status and take HIV medication. Which why 17 percent of HIV-positive people in the U.K. are unaware they actually have the virus.
So what do you think of when you hear the term ‘HIV stigma’? Maybe it conjures up images of HIV-positive people being cast out of their homes and communities because of their status, or perhaps being verbally or physically abused . Maybe it’s something you don’t think is anything to do with you and happens in countries thousands of miles from your own.
In reality, whilst these heartbreaking situations are of course happening, HIV stigma often takes a more subtle form, permeating everyday social situations that those without HIV might not even notice. Making a joke about Charlie Sheen. Presuming HIV only affects people who ‘sleep around’ or inject drugs ― and that their ‘immoral’ behaviour means they deserve it. Not believing you need a test because you’re not gay or ‘a junkie.’
So for World AIDS Day 2016, HIV bods Terrence Higgins Trust are running the #ItsNotOver campaign. Backed by familiar faces Stephen Fry and Graham Norton, the charity is asking us to open our eyes and realise that the fight against HIV is far from over ― and that stigma is one of the biggest barriers to ending the epidemic.
“I think mainstream society is still very stigmatising and ignorant about HIV,” says Silvia Petretti, deputy CEO of the HIV charity Positively UK. “Heterosexual men and women are often stuck in the 80’s: they don’t know about HIV medication or that people on successful treatment for HIV won’t transmit the virus. When people see that even a ‘nice lady’ like me can have HIV, they have to question their prejudices.”
Silvia herself was diagnosed with HIV in 1997, aged 29. “The idea of telling someone I fancied that I had HIV was utterly terrifying. The fear of judgment, rejection ― and being considered a ‘slut.’” She has also felt first hand the significant levels of intimate partner violence (IPV) experienced by HIV positive women: rates of IPV among HIV-positive women in the U.S. are estimated to be double the national rate.
“IPV is not always physical ― but psychological and emotional violence can be just as damaging,” says Silvia. “It took me over 10 years after the end of an abusive relationship to get myself into another as it was so traumatising. And sadly I was rejected and threatened again. A close friend of mine was beaten up by her partner, because of HIV, others were demeaned and controlled. It is not just a statistic. I have seen it time and time again.”
Whilst particular groups are at higher risk of contracting HIV (men who have sex with men (MSM), people from endemic areas of the world and injecting drug users), HIV really can affect anybody. As well as being passed on through unprotected vaginal and anal sex (very rarely oral) and injecting equipment, it can also be passed on from mother to child during pregnancy, known as ‘vertical transmission.’
Cece contracted HIV in the womb and was told she had HIV aged 11. “I just remember everything falling into place and finally understood why my whole life I’d been going to doctors appointments and taking medicine. However, it took me a very long time to be able to even say the 3 letters and I spoke to nobody until I was 16.”
“It made things difficult in terms of living a double life. I missed out on sleepovers and school trips. Growing up with HIV is difficult because at the same time that you are discovering who you are, you’re finding out that the world is not going to accept your status. This was probably the most difficult thing whilst growing up. Especially when feeling unable to defend yourself in the face of immature AIDS jokes.”
Stigma affects all aspects of life and is felt acutely by some in the workplace. Maria* is a newly diagnosed woman living in the UK. She has only disclosed her status to a select group, a decision fuelled by attitudes she has encountered at work.
“My boss has made some very judgmental and ignorant comments about HIV, about how people “deserve” it because they are promiscuous,” she says. “I have worked for my company for years and contributed to its growth. I have not taken a day off sick since my diagnosis, my performance hasn’t changed. I’m angry that I feel threatened by my boss’s possible reaction if I were to tell him. I consider this a form of psychological abuse.”
Stigma within the healthcare system itself also remains problematic. Some patients report feeling judged by doctors or nurses when requesting a test or discriminated against because they are HIV positive. Studies have shown that the situation is improving with education but work still needs to be done. The 17% of people unaware of their positive HIV status are responsible for over 80% of onward transmissions and patients diagnosed later have much bleaker outcomes. We need to shut these barriers down and test, test, test.
Attitudes to HIV in 2016 remain backward, fuelled by misinformation and fear of the unknown. And at a time of political and social uncertainty, we must work harder than ever to amend our own behaviours and breed non-judgmental, informed attitudes towards what is now a chronic, manageable disease.
This is one of the reasons Silvia became an HIV activist. “I had to fight back and that’s why I became open about my status, because I didn’t want to have a secret to have power over me,” she says. “I am not ashamed of having HIV. It is only a virus. I decided that the first step for me was not to treat it as something shameful anymore. But not everybody can be open. For many of us secrecy is still the safest option.”