Disclosing HIV status on social media – HIV update, 24 May 2022

A round-up of the latest HIV news, for people living with HIV in the UK and beyond.

Disclosing HIV status on social media

David MG/Shutterstock.com
David MG/Shutterstock.com

While many people are discreet and private about having HIV, or carefully share their status with a few people they are close to, some people living with HIV choose to share their status to a much larger group of people on Facebook, Instagram or other social media platforms.

Researchers in Australia spoke to a handful of men who had done so to find out about their experience. A limitation of the study is that it only included five interviewees, who were all White gay men with a university education.

They said that framing and controlling the narrative about having HIV was one of the main benefits. Crafting their own ‘disclosure post’ gave them a sense of agency. One man said:

“One night I was just like, ‘Nuh. I really want to raise awareness and remove stigma.’ And I actually bit the bullet and posted a Facebook status. And that's kind of how I fully became out about it. I didn't want any more secrets.”

The men mainly received supportive responses, but some did think that they have been ‘unfriended’ and gossiped about by some people. One man stopped going out as much as he did not want people to come up to him and talk about HIV.

One benefit of sharing HIV status in this way could be not needing to have multiple conversations where the act of disclosure would take on more gravity. One man posted a photo of his medication using the ‘close friends’ feature on Instagram. He said:

“One of the things I don't like about disclosing in a Hollywood sense is that it gives it too much weight, as in it feeds into a very old idea of HIV. So it requires this ‘sit down and brace yourself’ moment. Whereas I felt the suggestive, social-media form was more saying, ‘Oh, this is a part of my life now,’ rather than like, ‘I have something horrible to tell you.’”

Another interviewee said that he only discussed HIV on social media once he had talked face-to-face with family members. He did not want people he was close to come across the information on Facebook or hear it second hand.

Recommended treatments for HIV

The British HIV Association (BHIVA) published its draft treatment guidelines earlier this month.

We have updated our page on the recommended treatment options for people starting or changing HIV treatment in line with these guidelines.



In type 2 diabetes, the body is able to produce the hormone insulin but receptors have reduced sensitivity toward it so it is less effective. Insulin is the essential hormone that regulates blood sugar and when it becomes less effective, the body can’t transport glucose into cells to use as a source of energy.

This results in persistently high levels of sugar which in turn causes blood vessels to harden. This causes many problems including strokes, heart attacks, delayed healing and increased risk of infections.

Risk factors for type 2 diabetes include obesity, increasing age and genetics (people of south Asian, African and Afro-Caribbean descent are at higher risk).

In the general population, men have higher rates of diabetes than women. But an analysis involving almost 40,000 people living with HIV in the United States has found that women living with HIV are significantly more likely to be diagnosed with type 2 diabetes than men.

After adjusting for obesity and other risk factors for diabetes, the researchers found that women with HIV were 1.3 times more likely to have diabetes than women who don’t have HIV – whereas men with HIV were at no greater risk than men without it.

Why is this? One possibility is that women have innately stronger immune responses to initial HIV infection due to the effects of sex hormones – this is beneficial for controlling HIV, but may lead to greater insulin resistance over time.

Another possibility is that although the researchers tried to take account of other factors that affect the risk of diabetes, they were not able to fully do so. In the US, women living with HIV are more likely to be socio-economically disadvantaged than men, and the researchers may not have been able to capture all the social factors that affect the risk of diabetes. It’s also worth pointing out that the situation for women with HIV in other countries may not be the same.

This study highlights the importance of including enough women in research studies, to shed light on female/male health differences. Most studies recruit more men than women.

A second US study looked at whether the use of anti-HIV drugs called integrase inhibitors raises the risk of type 2 diabetes in people with HIV.

Integrase inhibitors are very widely used and include dolutegravir (Tivicay, also in the tablets Triumeq, Juluca and Dovato) and bictegravir (in the tablet Biktarvy). Some people put on weight after starting these drugs and there has been uncertainty over whether they are also linked to diabetes. This might be just because of the weight gain, or in addition to it.

The study included over 5000 people attending a large HIV clinic in Alabama. The study population was predominantly Black (62%) and male (77%).

Obesity had the greatest impact on the risk of developing diabetes. People with the highest body mass index (over 40) were ten times more likely to develop diabetes than people with a weight in the normal range. People classed as obese (a body mass index between 30 and 40) were four times more likely.

HIV-related factors played a smaller role. Treatment with an integrase inhibitor, living with HIV for more than ten years and a CD4 count between 200 and 350 each raised the risk of developing diabetes by around 1.5 times.

The researchers say that preventing excess weight gain is critical for prevention of diabetes in people with HIV.



On Monday's episode of aidsmapCHAT, Susan Cole and Matthew Hodson were joined by President of the British Association for Sexual Health and HIV, Dr Claire Dewsnap, who shared the latest news on monkeypox.

They also spoke to Ukrainian activist Anton Basenko from the European AIDS Treatment Group, Kenyan journalist and aidsmap Emerging Voices writer Edith Magak and senior advisor to the All-Party Parliamentary Group on HIV/AIDS, Mark Lewis.

Broadly neutralising antibodies

Wongsakorn Napaeng/Shutterstock.com
Wongsakorn Napaeng/Shutterstock.com

A lot of HIV researchers are working on broadly neutralising antibodies as potential HIV prevention, treatment, and cure therapies. As we reported a few months ago, one person has been off antiretroviral therapy with an undetectable viral load for almost four years after he was given a combination of a broadly neutralising antibody and a drug that prevents HIV-infected cells becoming latent and hiding from the immune system. But this was an isolated case – he was one out of 59 people in the study, and only one out of the 20 people who maintained an undetectable viral load after stopping his antiretroviral therapy.

In the most recent study, 17 people received seven infusions of two antibodies over a period of 20 weeks, and stopped receiving antiretroviral therapy after the first infusion. Most (13) maintained viral suppression for 20 weeks and some for longer, including two who maintained suppression for at least a year. The latent HIV reservoir of immune cells infected with HIV (which need to be eliminated for HIV to be cured), appeared to shrink, but only modestly.

Overall, these findings show that these two antibodies can suppress HIV and may reduce the number of cells containing viable HIV. Even if this antibody treatment doesn’t cure HIV, its ability to delay viral rebound could make it useful in combination with, or in place of, daily antiretroviral therapy.

HIV data sharing study

HIV data sharing study

Brighton and Sussex Medical School with the University of Sussex are running a focus group with people living with HIV so they can understand your views on sharing of health data for research purposes. They will use the results of the group to help guide future management of health data.

The focus group will take place online on 6 June from 6:30-8:30pm. You are able to join using a pseudonym and with your camera turned off, or you can also take part by having a one-to-one telephone interview. Everyone taking part will be given a voucher for £62.50 to compensate them for their time and involvement.

If you'd like to be involved contact michael.smith83@nhs.net

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