Shaking the shame and smashing the stigma around HIV

Shaking the shame and smashing the stigma around HIV


In my last blog I talked about some of the reasons why stigma, misinformation and fear around HIV is still a real and serious issue in the UK.

In order to get everyone who may have been exposed to HIV, no matter how low the risk, tested, communities have to work together to smash the stigma and break the boundaries that keep HIV from being something people talk openly about.

The irony is, that if people are misinformed about HIV and how it is transmitted, they are less likely to know if they need to be tested for HIV. The virus can exist in the body for years before symptoms show and as a result, a quarter of people with HIV have no idea they have it – becoming unknowingly responsible for the onward transmission of the virus. This is true of heterosexual people as well as men who have sex with men.

Stigma around HIV and misguided ideas about who can contract HIV, can prevent those worried that they might have been exposed to the virus getting tested or even seeking advice. Test and Treat programmes (where voluntary testing diagnoses people with HIV and they receive anti-retroviral treatment regardless of CD4 count or viral load) are being implemented in various countries all over the world and are generating evidence that HIV prevalence can be decreased.    

Despite there being a number of options for testing and treatment, the challenge remains of raising awareness of HIV and the various testing choices available, to encourage more people to know their HIV status, seek treatment and limit further HIV transmission.

In 2010, a nurse called Rachel Lewis wrote a great report on breaking stigma regarding HIV. She wrote that denial often goes hand in hand with discrimination, and many people deny that HIV even exists in their community.

She adds: “Although it is well intentioned and may be necessary to prioritise prevention messages for those considered to be at high risk of infection, messages that only target certain communities can bring their own problems.

“They can add to the stigmatisation of people in these groups and make them reluctant to admit risk or reveal their HIV status. This targeting may also give people outside these groups a false sense that they are not themselves at risk of HIV provided they avoid the targeted groups.”

Awareness around HIV and encouragement of HIV testing can only be successful if the public can break through taboos and misunderstanding.

People who have accurate information are less likely to stigmatise or show negative attitudes towards people with HIV. Everyone can be a role model. Displaying a positive attitude to HIV and generating conversation with those who’s values and beliefs may be different can really make a difference.

I think anyone who knows the truth about HIV – how it is spread, how it is treated and that it is ‘three letters not a sentence’ can play a role in raising awareness around HIV and normalise the whole conversation.

Learn the facts, then educate others. 

HIV communities and charities such as the National AIDS Trust do great work in producing research and nurturing debate – but these messages need to be talked about in the mainstream media and not be published in a sensationalist way.

So we need to have more news stories about living with HIV and more education around transmission routes and prevention. We need to have more mainstream articles on HIV and sexual health generally – basically we need to inform people without any scare tactics, that people with HIV can live normal lives – but that means they have to know their status and have the right treatment at the right time.

I know more awareness and more conversations will gradually build confidence in the misinformed population and slowly but surely the uptake of both testing and treatment will increase

It’s unrealistic to think that HIV stigma can be eliminated overnight, but I believe we can change perceptions one conversation and one blog post at a time.

Rachel Lewis introduced the mantra: "Less blame, less shame, less stigma, less HIV". I love this – and my mission is to get this message out there and let the conversation roll....… 


NB -The development of self testing for HIV in the UK gives people an additional testing option and means that if they want to, people can test themselves, where and when they want and get an immediate result. There have been mixed views from professionals about a person receiving their own result, but for some people it works to not have to go to a clinic or send a sample off and wait days for a text or a phone call from somebody they don’t know.

HIV Self Test Kit - Buy Now

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