Tag Archives: Health

Pregnant and diagnosed with HIV: the group providing support for mothers


Thirteen years ago, when Babalwa Mbono was eight months pregnant with her second child, she went to her clinic in Cape Town, South Africa, to have a routine HIV test.

Article via The Guardian

“I went with confidence because my first child was negative and I was negative then,” she says. When the test came back positive, Mbono couldn’t believe it. “When the counsellor who tested me showed me the results I thought, ‘you’re joking!’ I even asked her if she was sure.”

Mbono left the clinic in a daze and went home to reflect on the news, still in denial. She looked healthy and well, unlike her sister who had died three years previously from Aids-related tuberculosis. “For me, [the result] was something that was not real,” Mbono adds.

Nowadays many people in South Africa know about HIV. The country has the biggest and most high-profile epidemic in the world, with an estimated 7 million people living with the condition, according to UNAids figures. But in 2003 it was not a big topic, and discussions usually revolved around death, says Mbono. The fear of what having HIV might mean for her unborn child started to creep in, and she worried that she would not live long enough to care for a baby who might be infected.

When Mbono found out that she had HIV, South Africa’s government was still deciding whether to make antiretroviral treatment (ARVs) available to all, despite a third of pregnant women testing positive. Today, 48% of infected South African adults are on ARVs.

Back at the clinic, Mbono was linked up to a mentor mother through Johnson & Johnson’s mothers2mothers (M2M) programme. The scheme started in 2001 and has helped 1.4 million HIV-positive mothers in nine sub-Saharan African countries. It currently operates in Kenya, South Africa, Malawi, Lesotho, Uganda, Swaziland and Zambia – seven countries where it has virtually eliminated mother-to-child transmission (MTCT) among its patients, with a 2.1% transmission rate (the UN classifies virtual elimination as less than 5%).

Mbono’s HIV-positive mentor allayed her fears about death and her anger towards her husband, whom she blamed for giving her HIV after he tested positive with a much higher viral load. Through M2M, Mbono learned about taking ARVs to reduce the risk of MTCT in the womb and during breastfeeding, and about how to change her lifestyle to live a long and happy life with her children.

Last year, South Africa was one of six priority countries (all in sub-Saharan Africa) to meet a Global Plan target of reducing MTCT by 90%, with 95% of pregnant women with HIV on ARVs and an 84% reduction in new HIV infections among children.

Over the past year, Cuba, Belarus, Armenia and Thailand – non-priority countries – managed to eliminate MTCT altogether. In South Africa, mother-to-child transmission of HIV has fallen to 3.5%, putting the country within reach of eliminating paediatric infections, although maternal mortality remains high.

The M2M programme “makes the person feel supported”, Mbono says. “It’s a sisterhood, and it makes you feel like you have a family to cry on.” Through counselling, which helps to breaks down the stigma still attached to HIV/Aids in South Africa despite its high prevalence, Mbono also found the courage to confide in her parents and siblings.

And six months ago, she decided to disclose her HIV status to her daughter Anathi, who had just turned 13. “It really felt shocking,” says Anathi, who feared that there would be no one to look after her seven-year-old brother, who was born HIV negative. “I was afraid that she would leave us.”

Mbono reassured her daughter that she had tested negative when she was 18 months old, but Anathi decided to go alone to the clinic and be tested anyway, where she also accessed free counselling from health workers.

“I was so, so scared, but eventually they just sat with me and told me to not freak out and to not think negative things about my mum,” Anathi says. Over the two days she waited for her results, she spent time with her mother and learned more about M2M, even reading her mentoring books.

Mbono’s experience with M2M made her give up unhealthy habits, such as not eating properly and drinking alcohol, and inspired her to become a mentor mother in 2003. “The [programme] gave me the strength to go out there and tell people about HIV and correct the mistakes that people are making and [that] I also made when I didn’t have any information.”

She has gone from counselling others on HIV/Aids and family planning, to training other mentors and seeing them become nurses, social workers and students.

“What makes me most happy [is] when I see a woman who had broken up in pieces when she was told about HIV … and when you see her on the next visit she is much better than the day she left.”

Some 95% of babies in M2M’s South Africa programme test negative for HIV at 18 months, and that also makes Mbono proud. “That makes me feel that I’ve done my job, because 18 months is a long time for the mother to be supported and to be educated. There are so many challenges that they come across, and we are there [for them].”

Anathi set up a counselling group at school to discuss HIV and sex with 18 girls and five teachers, as well as a drama group to perform plays to parents and pupils that discuss staying HIV negative and breaking down stigma.

“Most people don’t talk about it … Young people are not getting enough information about HIV,” she says. Anathi has a friend who she says became a recluse after she found out she is positive, and she knows two girls who have gone off the rails since their mothers recently died of Aids.

But for Anathi, dealing with her mother’s HIV has made them stronger and brought them closer together.

She still worries about how well her mother has slept or eaten when they are apart, even though learning about ARVs has lessened her fears of her mother falling ill and not recovering. “I just worry too much and I call,” she says. “She is like my daughter.”

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How to combat the threat of HIV drug resistance

 A mother holds her antiretroviral drugs, Triomune, at a HIV testing and treatment clinic in Lagos, Nigeria. Photograph: David Levene for the Guardian

A mother holds her antiretroviral drugs, Triomune, at a HIV testing and treatment clinic in Lagos, Nigeria. Photograph: David Levene for the Guardian

As we strive for an Aids-free generation, we must help people adhere to antiretroviral treatment to stop them developing resistance.

For people living with HIV, antiretroviral treatment (ART) has been a life-saver. ART stops HIV from making copies of itself and prevents HIV from attacking the body’s immune system.

At the end of 2015, 17 million people were taking ART around the world and Aids-related deaths had fallen by 45% since the peak in 2005.

Story via The Guardian

But those who don’t stick to the ART regimen set out by their doctor or health worker might become resistant to the drugs. Resistance occurs when ART regimens are not taken as prescribed, which allows HIV to make copies of itself and increases the risk that the virus will mutate and produce drug-resistant HIV. A person who is on a drug such as Efavirenz can develop resistance after as little as a two-day interruption of treatment.

Globally, HIV drug resistance is on the rise. The World Health Organisation (WHO) reported that up to 2010, HIV drug resistance levels remained at 7% in developing countries. However, recently, some countries have reported levels at or above 10% among those starting ART, and up to 40% among people restarting ART.

At the beginning of the epidemic in sub-Saharan Africa, there was fear among the international community that people living with HIV in resource-limited settings would not be able to adhere to their treatment due to a lack of education and resources. Would they be able to keep time well enough to take their ART at the same time every day?

However, studies have demonstrated that people in sub-Saharan Africa may be better than people in the west at taking their ART as prescribed. The issue in developing countries is that people lack the resources to get to a clinic and pick up their pills. I’ve worked in Namibia since 2009, and whenever I visit ART clinics, there are long queues stretching out the door. People often have to wait all day and many can’t afford to take this time off work every month.

The stigma associated with being seen waiting in a queue to pick up medication is also a factor in people not adhering to their treatment plans. To avoid this, some people on ARTs travel to a clinic many kilometres away from their town, so they can receive treatment without anyone recognising them. And if you took a whole day off work, borrowed money for the transport and stood in a queue all day, only to learn that the clinic had run out of your pills, what would you do?

ARTs & HIV drug resistance

As the use of ART increases, so does the risk of HIV drug resistance. It’s no surprise, then, that global HIV drug resistance is on the rise, both among those already on ART and those just starting on it.

What could happen if levels of drug resistance reached critical levels? Their ART regimens would no longer be able to stop the HIV in their bodies from making copies of itself and they would then have to be switched to second-line regimens, if available.

But second-line regimens are more expensive. For countries already struggling to provide ART to those who need it, this would is likely to mean that fewer people could be started on ART.

Drug resistance has been a problem since the beginning of the HIV epidemic. In the west the problem was usually limited to individual patients. But in resource-limited settings, if a high percentage of the population develops drug resistance we could see large increases in Aids-related deaths and higher healthcare costs.

We must act now to help people adhere to their treatment plans, before it’s too late. Globally, there has been a huge focus on getting more people on treatment, but the quality of how it’s delivered has fallen by the wayside.

Drug resistance will rise when ART is not delivered in a well thought-out way. That requires strong drug supply systems with zero tolerance for an interruption of ART drug supply, strong and locally appropriate counselling to promote adherence, support for patients who don’t have the resources to access care, re-engagement of patients who have stopped going to the clinics, alternative ways to deliver care such as community-based ART groups, and strong medical record systems.

As we strive to end Aids as a public health threat by 2030, greater attention must be focused on identifying and correcting gaps in the quality of ART service delivery. Many lives depend on it and the time to act is now. If we don’t, we may find ourselves with a new global pandemic of drug-resistant HIV and be faced with a deadlier enemy than we started with.

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What It’s Like to Tell Your Boss That You’re HIV Positive

Office Workplace

In the modern British workplace, you can’t be fired or discriminated against in any way on the grounds that you’re HIV positive. That would be a criminal offence. Notifying your employer isn’t a legal requirement, but if you do chose to disclose your status and are met with anything other than support, confidentiality and reasonable adjustments, then your employer has almost certainly broken the law.

Story va VICE.

Part of the Equalities Act 2010 was created to lessen its impact in employment and ensure disclosure wouldn’t jeopardise careers or future opportunities. Under the legislature, people with HIV cannot be treated less favourably under any circumstances. But thanks to the stigma and misunderstanding surrounding HIV, some have found it wholly ineffectual.

Had Shaun* stayed silent about his own diagnosis, he wouldn’t be fighting to save his career. “I have felt over the past two years that they were looking for ways to get me,” he says. For the last six years, Shaun has worked in the insurance department of a FTSE 100 British supermarket chain and has asked for anonymity as the situation is ongoing.

He received his diagnosis one Monday lunchtime in September of 2013. Disorientated, he returned to work the following morning, but by 9:30AM he found himself coerced into a meeting room while human resources tried to determine the cause of his visible distress. Despite his best efforts to resist disclosing his status – one he had barely begun to come to terms with – he was told he would be sent home if he refused to explain his discomfort.

“I felt forced. I wasn’t ready to say it myself, to anyone, never mind the HR person who I don’t really know,” he recalls. “I disclosed. She literally just went, ‘I’ll need to go and check whether I’ll need to tell all the first aiders.’ I was like, ‘I don’t even have to tell you, never mind anyone else.’ I got a message in the afternoon saying they had checked and they didn’t need to tell the first aiders.”

Shaun was under no legal obligation to disclose his status to anyone in his company. Six weeks later, they displayed an offensive level of ignorance around the subject.

“They took me into a room and told me they’d done some research and that if I cut myself at my desk, or in the building, to make sure that someone comes into the room and cleans it up,” says Shaun. “I believe my words were, ‘Well of course, if you were a negative person you would just lie in a pool of your own blood, wouldn’t you?’ That just angered me even more because where have they researched it? Where have they got that information from?”

The Equalities Act 2010 states employers are to make reasonable adjustments with regards to people living with HIV; the most common being time off for clinic appointments. Despite an attendance track record Shaun describes as “exemplary” (before his diagnosis he hadn’t taken sick leave since 2009), his employer began tracking his absences on a spreadsheet stored on the company server.

“My head of department wanted to know which appointments were not covered by the Equalities Act, with no details or explanation to me as to why they wanted that information,” explains Shaun. “I said, ‘You’re making me feel like you’re out to get me. And, allegedly, that’s not the case. I don’t believe them, but at the same time they said because I’m spending so many hours out of the business, they were trying to quantify how much work I had done.”

When he disclosed his status, Shaun was stunned by how little his employers knew about HIV – especially with regards to employment law. This was, after all, the well-resourced HR department of a FTSE 100 company; that they can brazenly display such ignorance – not to mention intolerance – and get away with it doesn’t bode well for people living with HIV who work in much smaller businesses.

Alice started working as a sales consultant at a London-based recruitment firm – a small company with five employees – four months after her diagnosis. Shortly after starting her medication she fell ill and decided to let her boss know, meeting up with him in a pub outside of office hours.

“It was just awful,” she says, recalling his reaction to her disclosure. “Straight away I could tell it was the wrong thing to do because his eyes widened and then he said, ‘When am I gonna get AIDS? When am I gonna be ill?’ He started to freak out and then said he needed to change the contract because if I fell over he was going to be sued. He said, ‘Why the hell didn’t you say? I think it’s so unfair that you didn’t say.’ I thought he would thank me for telling him and maybe be a bit shocked. I was speechless.”

The conversation lasted around 40 minutes, with topics ranging from the potential dangers of sharing cups and cutlery in the office (there aren’t any dangers), the jokes he had previously made about people with HIV in the office (which he then denied making), the fact he needed her parents’ number in case anything happened to her (he didn’t) and his anger that he wasn’t told sooner.

The discussion finished constructively with a promise that he’d put together a workable plan. She never made it back into the office. Instead, she received an email stating that she’d failed to pass her probation and wouldn’t be kept on. Compared to a previous conversation Alice had with him, it made for a sharp change of direction.

“He honestly was like, ‘You’re gonna make loads of money,'” says Alice, considering their relationship prior to his disclosure. “We were working really closely together, starting to do other projects.”

While Shaun and Alice have faced difficulty from their employers on account of their HIV status, Jayce Carberry, 26 from Medway, Kent, suffered from the prejudice of his clients. He received his diagnosis in 2012 and at the time was working as a freelance hairdresser. When the rumours about his diagnosis started to spread through his relatively small hometown, he chose to own the situation and address them with a Facebook status.

“I was doing really well and I was busy all of the time,” says Carberry. “I text to confirm appointments, and [after my Facebook status] I would get a text or a phone call back saying, ‘I read on Facebook about your HIV and I don’t really feel comfortable with you cutting my hair.’ I would say I lost a good 40 percent of my client base.”

The most common reason his clients abandoned him was their irrational fear of what would happen if he cut himself on his scissors and they came into contact with his blood (very little, is the answer). With a sharply diminished client list, he tried to return to a salon he previously worked at and invested in. He was told hiring him “would be a risk to the reputation of the salon”. He had previously left the salon on good terms and the owner was supposedly a friend.

“I gave up hairdressing. It was demoralising with all that going on,” he says. “I got really depressed about it and hid away from the world for a couple of months and lived off my savings for a while. And then I went to sign on. I had no other option.” Carberry has since moved to Brighton. As well as setting up a blog detailing his journey, he now manages a sexual health website for the METRO Charity.

There’s a definite sense that fighting, even if you’re on the right side of the law, is difficult, if not impossible. While Shaun may yet find himself in an employment tribunal, Alice chose to avoid a lengthy and expensive trial. As Jayce Carberry was self-employed, he has no case at all.

Legal fees, time constraints, lack of evidence, ignorance around employment rights – the reasons why HIV discrimination in the workplace often goes unpunished and underreported are numerous. But the stigma and misunderstanding of HIV is what enables the law to continually be undermined. Until companies – and the general public – gain better knowledge of what the virus is, these stories will sadly continue to repeat themselves.

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*Name changed to protect identity

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It isn’t going away!!


The story of how LASS has responded to the challenge of HIV and AIDS was featured at this year’s East Midlands Oral History Day at Nottingham Library.

Tim Burke, who helped run our 25th anniversary history project in 2014, spoke to the conference about how the project got off the ground and about the interviews with volunteers and staff past and present that resulted in our publication “…and it won’t go away”.

He also read some extracts from the book that showed how LASS volunteers over the years have supported people living with AIDS/HIV.

“There was a great deal of interest from conference participants and they snapped some of the few remaining copies of the book,” said Tim.

“It was something of honour to be asked to contribute to the conference and I hope it will have further raised awareness of the significance of LASS’s work since 1987.”

This year’s event had a theme of oral history and health and LASS’s project was featured alongside other oral history projects ranging from working at Boot’s the Chemist to the medicinal use of cannabis and people’s experiences of life in and out of mental hospitals.

For more, and for your own copy of “…and it won’t go away”. Read the following article:

“…and it won’t go away.” 25 Years of Leicestershire AIDS Support Services

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Thailand becomes first country in Asia to eliminate mother-child HIV spread

A HIV-positive mother plays with her son, who did not contract the virus from her, in Phetchaburi province, south of Bangkok. (Credit: SAKCHAI LALIT/AP)

A HIV-positive mother plays with her son, who did not contract the virus from her, in Phetchaburi province, south of Bangkok. (Credit: SAKCHAI LALIT/AP)

Thailand’s success comes from strong prenatal care from large cities all the way to the poorest villages. Nearly all pregnant Thai women are screened for HIV, 95 per cent of those who test positive are treated to prevent transmission to their babies and almost 100 per cent of babies born to HIV-positive mothers are given antiretroviral drugs.

Article via Telegraph

However, hundreds of thousands of migrant women, many of them working or seeking menial jobs in Thailand, are not included in the data. Many poor women from neighbouring Burma and Cambodia do not receive any prenatal care or HIV screening while in Thailand.

A 2010 Thai government report found that two to three times more migrant women were infected with HIV in certain areas of the country.

There are an estimated 2.7 million registered and undocumented male and female migrant workers in Thailand. They have limited access to the country’s health care system, and many are reluctant to get tested or treated for HIV due to language barriers or out of fear they will lose their jobs or have negative interactions with police or other authority figures, according to UNAids.

Steve Mills, technical director at nonprofit FHI360’s Asia-Pacific office in Bangkok, said this is an area Thailand needs to improve, along with focusing more on at-risk populations such as intravenous drug users and sex workers operating outside of brothels. Gay men and transgender people are of particular concern.

“With the evolution of the epidemic and people being on HIV treatment, it’s meant that condom use is harder to get to a satisfactory level,” he said, adding that gay men and transgender people are often harder to reach today because couples often meet through social networks instead of in bars, saunas or other public places where outreach workers once targeted them.

“We need to encourage people to get tested.”

Last year, the World Bank published a study calling for more free anonymous testing and treatment among gay men. It said the rate of infection within Bangkok alone had jumped from an estimated 21 per cent in 2000 to 28 per cent in 2012.

Only one-fifth of those infected were receiving antiretroviral drugs, even though it’s provided by the government without cost.

Thailand was hailed by the international community as a model for other countries after promoting 100 per cent condom use among sex workers in brothels in the 1990s, drastically reducing infection rates.

But Aids continues to kill. In 2014, an estimated 20,000 people died from the disease in Thailand, a rate that has remained steady for the past five years. An estimated 450,000 people are living with the virusin the country of 60 million.


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HIV activism: ‘It feels more like social work than my day job in adult services’

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I want people with HIV to live free from oppression, & for the NHS and social services to become HIV-neutral in their activities

I was diagnosed with HIV in 1994, a time of moral panic about the condition. The stigma I had internalised about HIV, combined with that of sex and sexuality, made me to hide the diagnosis from family and friends for six years. Consequently, and despite physically managing the condition well with antiretroviral medications, I have battled with depression since. While in mental health recovery, I realised I wanted to work in a helping profession and qualified as a social worker in 2010.

I won’t be the first person from a disadvantaged group who has been motivated to do social work. But having worked in a range of adult health settings since qualifying, it has failed to satisfy me, so in July 2015 I founded Live HIV Neutral – an activists’ working network. Its focus is challenging HIV stigma and it aims to broaden the dialogue about HIV prevention to the mainstream arena; only in such forums will stigma be overcome. It is closer to the type of work that inspired me to become a social worker in that it aims to bring about change in society. As the job did not exist, I had to create it. It is unpaid, so I manage it alongside my day job in adult social care.

Many people ask me why I want to do unpaid activism on top of a stressful job in statutory adult services. The honest response is that if I only did the paid work, I would probably no longer be a social worker. The ever-narrowing definition of social work to include primarily legally indicated tasks, such as safeguarding adult investigations and best interests assessments, is not enjoyable. There is little emotional succour in this work, so I try to redress the balance elsewhere. The faultline between social work and community work is debatable. But, to me, this activism feels more like social work. It is what makes the day job bearable.

The shift from traditional social work roles toward a more refined definition of tasks was catalysed by a desire to define the professionalism of the sector. There is certainly a need to distinguish between social work and other professions. But I am uncertain whether it’s wise or possible to draw clear lines between social work and community work. I consider much of third sector activity to be social work, which is shown by the growing dependence of social services on this sector to provide essential services: for instance, adult social care’s working relationships with Age UK and carer’s centres.

Live HIV Neutral aims to empower people to make changes in their lives, to live free from discrimination and oppression, and to have an equal voice in society. If that is not a social work role then I am not a social worker. And there is a dire need for community capacity building in this area at a time of harsh local authority cuts. HIV services are linked to sexual health services and these remain the responsibility of local authorities in England. Many people fear losing essential resources as ill-informed commissioners decide the future of services they do not understand.

Further local authority cuts are inevitable. Rather than directly fighting them, I believe it is time for HIV and other blood-borne viruses, such as hepatitis C, to be redefined as the responsibility of the NHS. This would ensure essential health services are funded from budgets with more protection. In addition, it would contribute to challenging stigma. Not everyone who has HIV or hepatitis C got it through sex. And many people who did acquire infections via sex report the experience of attending sexual health clinics as oppressive. Some people with HIV choose to abstain from sex rather than negotiate relationships, yet when they attend blood tests they are routinely asked how many sexual partners they have had.

Another casualty of the cuts in many regions is HIV specialist social worker posts. This is concerning many people who have relied on this specialism to overcome the stigma they face. The cut means social workers in generic care teams are now engaging with people with HIV. This risks people with a lack of specialist knowledge trying to negotiate a stigmatised health condition.

I don’t doubt that some people will say things in ways that others experience as stigmatising. But, despite this, enabling a wider social work cohort to develop knowledge about HIV is a good thing. As people with HIV age and manage co-morbidities such as strokes or diabetes, this knowledge base will increasingly be secondary to another specialisms. Perhaps it is via the education of a wider health and care cohort that HIV stigma will begin to be challenged in these professions, in a similar way as we have seen with mental health stigma.

And that is where the network comes in. We aim to take the conversation about HIV beyond the bubble of the HIV sector. We want mainstream organisations, such as the NHS and social services departments, to consider how they can become HIV neutral in their activities. As a social worker in an integrated health and care landscape, this is the challenge I need to take on. So we have developed the Live HIV Neutral pledge and, for World Aids Day 2016, we want to see organisations taking the pledge and telling society what living HIV neutral means to them. We do not want symbolism, we want meaningful action.

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Why Are Women and Trans People Absent from HIV Prevention Campaigns?



“I’ve been HIV-positive for 25 years,” says Juno Roche. “But as far as statistics go, I’m invisible. A few years ago, I noticed one of my prescriptions still had “male” on it. They still had me down as a man who sleeps with men.”

UK-specific data on HIV positive trans women like Roche simply doesn’t exist. “No data is presented for transgender people,” reads the last Public Health England report into HIV transmission. Given that, globally, trans people are an estimated 49 times more likely to have HIV, the emission is serious.

As you read this, the UK is waiting for the NHS to reveal its latest decision on the rollout of Pre Exposure Prophylaxis (PrEP), Truvada, a drug that’s been shown to reduce the risk of HIV infection by 86 percent. In both the PrEP trials and the literature that followed, the focus was almost solely on cis, gay men. In the fight to be included, trans people stand alongside cis women, who are also noticeably absent from HIV campaigns.

Story via VICE.

Men who have sex with men (MSM) make up around 40 percent of new HIV diagnoses in the UK, so it’s logical that this group should have a central place in campaigns. Likewise, people of black African ethnicity are at higher risk and are, rightly, targeted by sexual health campaigns. However, campaigners believe the silence around other groups is dangerous.

Roche isn’t sure of the exact time she became HIV-positive. She sold sex during her 20s, to support a drug habit. She says that, for her, a desire to be accepted sexually had a direct impact on the level of risk she took. “You’re terribly vulnerable because, if you try to affirm your gender by sex—which I certainly have done—you become less keen to create boundaries like asking people to use condoms.”

“As chaotic as my life was then, if there had been a campaign which talked about a prevention for HIV, I would have sought it out,” she continues. “I was terrified of contracting HIV but knew I was at risk and that partners—paying or not—wouldn’t always use condoms.”

Sophie Strachan, is an HIV activist and trustee of the Sophia Forum, which campaigns for the meaningful involvement of women living with HIV in research, policy, and healthcare. As a woman living with HIV, Strachan says she often feels “secondary” when it comes to HIV/AIDS prevention.

“A significant population is being excluded,” she says. “Women are left behind in the response to HIV, yet we make up just over half the number, globally, of people living with HIV. There are 22,500 women with HIV in the UK.”

Being omitted from campaigns, Strachan says, means that “women of all ages and diversity are walking around just not believing they’re a risk group when it comes to HIV.”

“I’m seeing women who are presenting at hospital with acute, AIDS-defining illnesses—because there’s been a missed opportunity with their GP or because they’ve had undiagnosed HIV for a long time—just completely shocked that this is happening to them,” Strachan says.

Clinical trials across the board have traditionally been made up of cis men. As a consequence, there’s a lack of data around the way HIV and HIV medication affects women’s bodies.

When women are mentioned in relation to HIV, the focus is often on childbearing and the risk of transmitting HIV to the fetus. There’s also an automatic assumption that everyone is cis and heterosexual. Women who have sex with women have been largely invisible in the response to HIV/AIDS, and data remains as low for them as for trans women.

“It doesn’t come into the conversation that lesbian and bi women are even a number in the global epidemic of HIV,” Strachan says.

Crucially, for women, HIV can be both a cause and a consequence of gender-based violence. A recent report revealed that in the UK, 80 percent of women with HIV have experienced violence (the number is 89 percent globally).

Given these additional risks, Strachan says she’s disheartened at the lack of women-specific campaigns. PrEP would be an ideal additional choice for women unable to use condoms or for those who want to become pregnant. For vulnerable women, PrEP could be life-saving because, unlike condoms, it is personally controlled.

At CliniQ, a sexual health center for trans people, operating from London’s Dean Street Clinic, co-founder Michelle Ross says that invisibility in HIV campaigns is a huge problem.

“If you think of the campaigns that are going forward around access to PrEP, there’s very little awareness about the issues for trans women and trans men, or for cis women,” Ross says. “It reaffirms that people are invisible and therefore you don’t count. If you’re already a stigmatized community, it reinforces this. What’s really important is seeing someone you can relate to, hearing about health issues that relate to you.”

Outside spaces like CliniQ, visiting the doctor may already be an ordeal. “I was talking to a trans man who has a vagina and a penis, and they said that they’ve had people run out of the room when they went for a cervical smear,” Roche says. “Are you going to go back when that happens?”

Ross says that HIV campaigns need to address the specific needs of the trans community. “What I’d like to see is culturally aware terminology, especially around HIV meds,” she says. “There can be a real concern for some trans people that HIV meds are going to mess with your hormones. If you’ve reached a place where you feel more comfortable with yourself because of the hormones you’re taking, undoing that can have a really negative effect.”

For its part, PHE says it’s aware of the issues and is taking steps to fill in the data gaps. Valerie Delpech, Head of national HIV surveillance HIV and STI Department told VICE, “Public Health England has been working to improve the recording of gender identity among those attending for NHS HIV care. We are now rolling out a new reporting system across England, which includes an option for people to self-identify as transgender or non-binary.”

Earlier this month, the Sophia Forum called for PrEP to be made available for everyone who needs it. The statement was backed by organizations including ACT UP London, Body & Soul, Global Network of People Living with HIV, National AIDS Trust, and Positively UK.

High profile PrEP activists—who are mainly gay, cis men—agree that this isn’t a case of us versus them. As Greg Owen, an HIV positive campaigner and founder of I Want PrEP Now says, “Our approach to PrEP and HIV prevention needs to be the same as the virus’s approach to us: i.e., it doesn’t give a shit who you are. The clue is in the name: Human Immunodeficiency Virus. If you’re human this is your issue. PrEP needs to be access for all.”


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