When I admitted I was HIV positive, my fellow academics excluded me

When I was diagnosed with HIV, I had no idea that new drugs had transformed the virus from something life-threatening to little more than an inconvenience. Today, a daily pill gives me an average life expectancy and makes it impossible to pass the virus on. But there’s one last major health barrier: the social stigma, and the mental health issues it causes. Worryingly, this is so prevalent that it can even come from those who claim to be experts on the topic. In my case, this happened when I disclosed my status to academic mentors.

Three days after my diagnosis, a professor specialising in sexual health contacted me online to share her views about HIV-positive people. She said the virus affected only reckless people, who couldn’t be trusted to take their meds.

I replied that her comments were judgmental and ignorant, contributing to an outdated attitude that forces many people to hide their status. She replied: “It’s not irrational to protect yourself. They should be honest, unless they are unethical”, adding that HIV was a “killer” with “a higher probability of death” than other sexually transmitted infections. I had looked up to this professor, and her comments hurt.

Framing HIV-positive people as “reckless” and HIV-negative people as “rational” is a binary logic that has roots in the political climate of the 1980s. HIV was seen as the responsibility of individuals, rather than of the state to provide adequate healthcare. The inaction of Conservative leaders at the time inspired queer protest movements. Similar tensions have re-emerged recently over whether the NHS should fund PrEP, a tablet (identical to mine) that prevents HIV infection. The tabloids call it a “promiscuity pill”.

Although my PhD supervisor was initially sympathetic about the diagnosis, once I fell out with the professor he began to treat me differently. Until then, we had maintained a close personal and professional relationship, communicating regularly through social media. Our relationship changed quickly from friendly to formal. Where once we had exchanged hundreds of WhatsApp messages, these dwindled to a couple a month. Eventually, all communication was through university emails, focused on work.

Until you experience it, indirect discrimination can be difficult to see, let alone prove. I decided to drop my supervisor, given the emotional pain I experienced when he ignored my messages. But other PhD students in the professor’s sphere of influence also stopped talking to me.

By falling out of favour with the clique’s matriarch, I was ostracised by the whole gang of scholars, perhaps for the good of their own career prospects or publication metrics. Mine, by contrast, have suffered. While my previous publications have been cited by this group dozens of times, my most recent journal article has not been cited once, despite its relevance to their body of research.

My story is not the only example of so-called experts holding discriminatory views. For example, one black woman living with HIV described in a blogpost “an HIV researcher who became disgusted after she revealed her status to him”.

We must remember that HIV is an intersectional issue, disproportionately affecting not just middle-class white gay men, but people of colour, trans women and sex workers. While it’s by no means widespread and may often be subconscious, discrimination and disgust towards those of us living with HIV matters. It will be a barrier to wider participation in the academy for as long as its hypocrisy goes unchallenged.

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Doctors urged to consider psychological as well as medical factors in HIV treatment

Doctors need to consider the social and psychological, as well as the medical, aspects of HIV diagnosis and care, advised Professor Rusi Jaspal in his keynote speech at the UK’s largest HIV conference.

The fourth joint conference organised by the British HIV Association and the British Association for Sexual Health and HIV, brought together around 400 clinicians from across the country to discuss the latest advances in treatment, care and initiatives to engage hard-to-reach communities. You can watch his lecture here.


Prof Jaspal, Chair in Psychology and Sexual Health, explained how tenets of Identity Process Theory can help clinicians understand the factors that can lead people to engage in high-risk behaviours – and provided evidence-based recommendations on how clinicians can intervene to help reduce the risk of HIV infection, particularly among men who have sex with men (MSM).

In response to social and psychological trauma, such as homophobia or childhood abuse, some MSM may adopt unhealthy coping strategies. Some may not engage with treatment or care because they do not see themselves as in need of help or because do not want to see themselves as being “high risk”. By understanding more about how patients view themselves, their social networks and their psychological wellbeing, Prof Jaspal argued, clinicians may be better positioned to identify potential risk factors and improve patient outcomes.


He said: “By discussing with patients the broader context of their lives, clinicians may be able to identify potential risk factors for HIV infection or for poor engagement with HIV care

“Crucially, doctors should be aware of the complexity of patients’ lives and identities – what may seem a good clinical solution to a particular medical problem can pose significant risks for psychological wellbeing, so this needs to be managed carefully. Understanding this can improve the effectiveness of the clinical solution.

“At a time when cuts are being introduced due to austerity, it is essential that policy-makers and commissioners do not overlook the importance of psychosocial support in sexual health. By investing in psychosocial support services, we have the potential to improve sexual health outcomes, and to prevent HIV, in patients.”

Rusi-book-cover560x876Prof Jaspal’s lecture introduced Identity Process Theory, which presents a model of how people attempt to cope with the adverse psychological events that can occur in their lives, so that clinicians might be able to predict coping patterns and encourage more effective and healthy coping strategies in patients.

The keynote discussed the temptation of engaging in ‘escapist’ behaviours like drug use in sexualised settings (or ‘chemsex’) in order to cope with psychological adversity. HIV is preventable with the use of condoms and/ or pre-exposure prophylaxis (PrEP). HIV infection is effectively treatable with the use of antiretroviral therapy.

Prof Jaspal’s book ‘Enhancing Sexual Health, Self-Identity and Wellbeing among Men Who Have Sex With Men: A Guide for Practitioners’, which presents practical recommendations for sexual health practitioners, is out on 21 June 2018.
Men who have sex with men (MSM) are the group most affected by HIV in the UK. Around 47,000 MSM were living with HIV in the UK in 2015 – approximately 46% of the HIV patient population in the Uk.

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Caught on Camera: How HIV Infects Cells

Live Imaging of HIV-1 Transfer across T Cell Virological Synapse to Epithelial cells that Promotes Stromal Macrophage Infection

Real et al. established by live imaging the dynamics of virological synapses formed between HIV-1-infected T cells and the epithelium at the surface of a human reconstructed mucosa. HIV-1 virions formed at the viral synapse cross the epithelium and reach the mucosal stroma, where the virus establishes a latent infection in macrophages.

During sexual intercourse, HIV-1 crosses epithelial barriers composing the genital mucosa, a poorly understood feature that requires an HIV-1-infected cell vectoring efficient mucosal HIV-1 entry. Therefore, urethral mucosa comprising a polarized epithelium and a stroma composed of fibroblasts and macrophages were reconstructed in vitro. Using this system, we demonstrate by live imaging that efficient HIV-1 transmission to stromal macrophages depends on cell-mediated transfer of the virus through virological synapses formed between HIV-1-infected CD4+ T cells and the epithelial cell mucosal surface.

We visualized HIV-1 translocation through mucosal epithelial cells via transcytosis in regions where virological synapses occurred. In turn, interleukin-13 is secreted and HIV-1 targets macrophages, which develop a latent state of infection reversed by lipopolysaccharide (LPS) activation. The live observation of virological synapse formation reported herein is key in the design of vaccines and antiretroviral therapies aimed at blocking HIV-1 access to cellular reservoirs in genital mucosa.

Read more on the research here: https://www.cell.com/cell-reports/pdfExtended/S2211-1247(18)30570-9

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Ramadan, Fasting and HIV

Crescent Moon

Image Credit: Tom Robson

Ramadan is the name of one of the 12 lunar months of the Islamic calendar.  For 29/30 days of Ramadan, Muslims fast from sunrise until sunset.  Many HIV-positive wish to join their community in observing this important month, can they?

During Ramadan, (due to start on Tuesday) Muslims practice the maximum self-control by denying their bodies every earthly pleasure during the daylight.  This means that eating food and drinking (including water).

After sunset, a fasting individual may eat and drink.  Many attend Mosques at night to pray and socialise.  Ramadan ends when the next crescent moon is born and celebrated with Eid ul-Fitr [breaking fast feast].

Fasting is a healthy practice for people with good health; the Quran exempted some categories from fasting – the sick, pregnant, breastfeeding mothers and travellers — and the wisdom behind this waiver is to spare hardship or damage. However, in spite of the Quranic waiver to those who are sick, many Muslims insist on fasting even if they have a minor health condition, justified the rewarding experience and of course to be part of the community.  Of course if you decide not to fast, the Quran says that you are obliged to feed someone who is less fortunate than you.

The question is, can someone or should someone who is HIV positive fast for Ramadan?

The best person to help you decide is your HIV doctor.  To help you and your doctor make the decision, you need to take under consideration some general factors, such as: when you were diagnosed, your overall health, your viral load and T-cell count.  Those in the early period of treatment should not fast, because the body is still trying to adjust to HIV and the treatment which you are having.

If you have been on treatment for some time, and your T-cell numbers are good, with undetectable viral load, and an overall good health then you might consider discussing your wish to observe Ramadan with your doctor.  Explain to her/him that you cannot let any substance go down your mouth to your stomach from sunrise to sunset.

Ask your doctor if your medication regimen could be adjusted with no risk, so you can take it before the sunrise and/or after the sunset.  If you are on a one pill regimen it might be easier for you to fast than if you are on a multiple pill one.

Once you get the green light from your doctor, you still need to take extra steps when fasting Ramadan.

For example, try to prepare good supplements to use on a daily basis during the month if you haven’t been doing so; in Ramadan eating less meals a day could seriously decrease your intake of important minerals and vitamins. Drink plenty of water during the night and avoid salty meals that could make you thirsty. Avoid unnecessary exposure to sun or heat to avoid dehydration. Do not overload your body with work and rest well while fasting.

Medical experts appeal to those who fast and ask them to stay from fizzy or carbonated drinks like cola, lemonade & other flavours even at Lftar (fast-breaking time).  A long day of fasting causes dehydration of the kidneys.  Having cold and fizzy drinks can suddenly cause the kidneys to fail.  Instead, use fresh water and fresh juices.

Ramadan is a good opportunity to quit bad habits; remember that smoking is not allowed while fasting, so if you do smoke maybe this is a good time to quit.

Fasting can also have great health benefits if done the proper way.  According to Mayo Clinic, “Regular fasting can decrease your low-density lipoprotein, or ‘bad,’ cholesterol. It’s also thought that fasting may improve the way your body metabolizes sugar. This can reduce your risk of gaining weight and developing diabetes, which are both risk factors for heart disease.”

Remember: the Quran forbids Muslims to commit acts that could even remotely jeopardise your health.  If your doctor advised against fasting, or if you have any concern that fasting might hurt your health, then don’t fast and invest the month in doing all the other good deeds that you can do; you can delay your lunch meal to be able to join your community in the daily fast-breaking ceremony.

We wish you a joyful and happy Ramadan filled with blessings and generosity.  We hope this Ramadan will enable you explore the great benefits of spirituality while fighting against HIV/AIDS or any other hardship.

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Art Therapy Workshop

You are invited to an Art Therapy Workshop with a focus on mental health & wellbeing on Thursday, 10th May – 11am till 1pm

Light refreshments provided – All are welcome, no previous art experience necessary.

For more information, please see our Facebook Event, or contact contact Rachael (rachael@lass.org.uk) or call us on 0116 2559995

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The Future of HIV and U=U

People all over the world are receiving effective HIV treatments and more treatment options are in the pipeline. Now, global health organisations want to end the AIDS epidemic

Via New Scientist

IN 2015, the Joint United Nations Programme on HIV/AIDS (UNAIDS) launched an ambitious target: to end the AIDS epidemic by 2030. The aim is that no child will be born with HIV and anybody already infected will be treated with medicines that give the best opportunity for healthy living.

This goal is in stark contrast to the early days of the epidemic, when the virus wreaked havoc. In the 1980s and 90s, an HIV infection was almost always fatal. But treatment has come a long way since then.

Today, nearly 21 million people around the world receive life-saving antiretroviral therapies, which can reduce the amount of the virus in the blood to undetectable levels. And scientists have even greater ambitions: some are developing vaccines, others are formulating long-acting treatments and still more are working on a cure. “HIV has changed from a deadly disease to a manageable disease,” says Jens Lundgren at the University of Copenhagen in Denmark, who has been working on HIV care and research for the past 30 years.

Until recently, HIV’s spread was rapid because it is easily transmitted via contact with infected blood and other body fluids. The most common routes of infection are through sex and shared needles.

But the risk of transmission can now be substantially reduced with antiretroviral medicines. Bruce Richman, who was diagnosed with HIV in 2003, says the treatments have changed his life. “For much of the time I had HIV, I isolated myself and had a sense of fear and shame,” he says. “Because I had a fear of transmitting HIV, I feared getting close to romantic partners.”

But that changed in 2012, when Richman’s doctor informed him that his antiretroviral treatment had reduced the amount of HIV in his blood to undetectable levels. The news was a revelation and Richman realised he no longer needed to hide.

Keen to spread the word, he started a campaign to publicise the life-changing effects of antiretrovirals and their impact on transmission rates. He called the campaign U=U (Undetectable = Untransmittable). His aim was to change the way people understand what an HIV diagnosis means, encourage those who are infected to keep up with their treatments and help lift the enduring stigma of HIV. “It improves the lives of people with HIV, and opens up social, sexual and reproductive lives that we didn’t think were possible,” says Richman.

“Eliminating AIDS as a public health threat by 2030 is potentially achievable”

Since 2016, the U=U campaign has teamed up with 570 other organisations in 71 countries to share the message. “In most of these countries people have been taught to fear HIV and people with HIV,” says Richman. “Now we’re turning a corner.”

The impact of this and other prevention strategies and campaigns has begun to reduce new infection rates. In 2016 in London, four sexual health clinics saw a 40 per cent fall in new HIV infections among gay men compared with 2015. And the number of new diagnoses in San Francisco has dropped by more than 50 per cent since 2006, in large part because of this “treatment as prevention” approach, also known as TasP.

But more work is needed, for example, on a vaccine. For some other viruses, vaccines work by mimicking the biochemistry of people who seem to be naturally protected from infection. “For HIV, we don’t have a good naturally protective correlate to work with,” says Lundgren.

Another difficulty is the lack of a good animal model for human HIV infections. Potential vaccines that show promise in monkeys infected with the similar simian immunodeficiency virus (SIV) have not been successful in human clinical trials.

There are also hopes for an HIV cure, but this has been harder to come by than expected. The main problem with trying to cure HIV is that there is a latent reservoir of the virus in the body.

That is why the leading strategy in the hunt for a cure is the “kick and kill” approach. This aims to kick HIV out of cells that act as a reservoir and then kill the virus.

While focusing on such scientific problems to make a cure a possibility in future, researchers at pharmaceutical company Gilead are also making progress when it comes to the potential for longer-acting treatments. At the moment, antiretroviral drugs must be taken on a daily basis and this can prove difficult for some.

Winston Tse, a senior scientist at Gilead, is working on a treatment that looks to be particularly potent and could take the form of a long-acting injection. He and his colleagues have set their sights on a protein that surrounds and protects the HIV RNA genome which is essential to viral life including its ability to infect new cells. The team is developing compounds that interfere with this protein and so inhibit the ability for the virus to replicate.

“Such a treatment could help with compliance, as well as lessening the emotional burden of taking daily HIV treatment,” says Tse.

It is this focus on prevention and treatment that make the UNAIDS goal potentially achievable – eliminating AIDS as a public health risk by 2030. “I would love a cure, but I’m investing my time into the strategy of testing, treating and prevention, because I think that’s the way to end this epidemic,” says Richman.

Lundgren agrees. “We have the tools, we have the drugs, we have the tests,” he says. “If we push resources, we can control it.”

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Female Condoms: Difficult to find in the US, easy to get in UK.

Female condoms are an alternative to regular condoms. They provide pretty much the same great protection from pregnancy and sexually transmitted infections (STIs). What’s different about them? Instead of going on the penis, female condoms go inside your vagina for pregnancy prevention or into the vagina or anus for protection from STDs.

There are hundreds of different kinds of male condoms for sale in the US, but only one female condom and you need a prescription to get it. Female condoms are almost as effective as male condoms, so why are they so hard to find in the US?

At LASS, we’ve been providing female condoms for over 10 years, and when we mention them at our training events or offer them to individuals who test for HIV at LASS, they are often surprised at their existence.

The situation isn’t as bad in the UK compared to America as the above video from Vox describes but publication and awareness of female condoms isn’t as readily available as their male counterparts, (even in the UK) and we want to change that!

Female condoms have been around since the 1980’s, when a Danish doctor named Lasse Hessel came up with a prototype. However, the media ridiculed it, comparing it to a plastic bag.

Female condoms have never been marketed very well and stigma over a sexual health aid still hangs around to the point that in the US last year, the company that manufactures them stopped selling them in stores and changed to a prescription-only model, so indivuals in the states need to see a doctor, just to get a condom.

That’s backwards thinking and we say they are just as valid as male condoms to help prevent STIs (including HIV) Another excellent reason for using female condoms is they’re the only women -initiated method of planning and actively pursuing safer sex. Many say they’re preferable for anal sex too!

How do female condoms work?

Female condoms (also called internal condoms) are little nitrile (soft plastic) pouches that you put inside your vagina. They cover the inside of your vagina, creating a barrier that stops sperm from reaching an egg. If sperm can’t get to an egg, you can’t get pregnant. The female condom also helps prevent sexually transmitted infections.  Female condoms aren’t just birth control — they also reduce the risk of sexually transmitted infections.

Female condoms help prevent STIs by covering the inside of your anus, vagina, and some parts of your vulva. This decreases your chance of coming in contact with semen or skin that can spread STIs.

Unlike in the United States as the above video shows, female condoms are becoming easier to find online, in stores, and at family planning centers. And you don’t need a prescription or ID to buy them. They’re a small, discreet, and portable way to get big protection from pregnancy and STDs.

We provide them freely at LASS, since all the other condoms out there are worn on a penis, many female condom fans love that there’s a condom they can control. Female condoms let you take charge of your sexual health. Even if your partner doesn’t want to wear a condom, you can still protect yourself.

You can also buy them online, here’s a couple of links from Amazon (Pasante) (Velvet)

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