Tag Archives: discrimination

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I replied that her comments were judgmental and ignorant, contributing to an outdated attitude that forces many people to hide their status.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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The fight goes on against HIV

HIV Stigma

The progress made in the treatment of HIV infection in recent years cannot be overstated. What was once a death sentence is now treatable. A HIV patient beginning treatment today can hope to have to a normal life expectancy, albeit one dependent on continuous medical treatment. Those with undetectable viral loads have almost no chance of transmitting infection, nor does infection prevent people going on to have children.

Story via The Pharmaceutical Journal
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You would find it hard to believe therefore that this month the headline ‘Hollywood HIV panic’ ran in the UK’s biggest circulation tabloid The Sun in reference to an actor being diagnosed with HIV. Charlie Sheen announced soon after that he has been living with HIV for the past four years. The worst part about the illness, said Sheen, is the shame that comes with it. People do not take action or get help because of the stigma, he added.

In the West, you could have been forgiven for thinking we had grown to accept people living with HIV. Many individuals who have challenged the early misconceptions about HIV/AIDS and many more people who have learnt to embrace their status and campaign for greater public acceptance have done much to reduce the stigma of disease and educate the public about HIV infection.

Yet stigmatisation of people living with HIV remains a major problem worldwide. The World Health Organization (WHO) cites fear of stigma and discrimination as the main reason why people are reluctant to get tested, disclose their HIV status and take antiretroviral drugs.

Some national governments still deny the existence of HIV, dismissing it as a disease of the West confined to those who are sexually deviant. It is in these countries where those living with the virus will continue to die unnecessarily.

Stigma creates a culture of fear, and this fear could lead to people refusing to get tested, begin treatment and stop the virus from spreading further.

Nonetheless, in the past few years great progress has been made in the battle against the HIV epidemic. Previously, diagnosing HIV infection was cumbersome and slow. The standard medical practice was to hold off initiating treatment until a patient’s CD4 cell count dropped to a level where they were at higher risk of developing AIDS. Much attention is now directed at identifying those at risk and swiftly diagnosing those infected with the virus, and there is growing evidence that those diagnosed should be started on treatment as soon as possible. For example, the START trial, carried out in 35 countries, was stopped over a year early after interim results showed that the health benefits of starting antiretroviral drugs immediately, regardless of CD4 cell counts, outweighed the potential risk to health. The WHO recommends that anyone infected with HIV should begin antiretroviral treatment as soon as possible after diagnosis.

The use of treatment as prevention (TasP) — a HIV prevention method that uses antiretroviral treatment (ART) to decrease the risk of HIV transmission — continues to grow. In 2011, the landmark study HPTN 052 showed early initiation of antiretroviral (ARV) treatment in those with a CD4+ cell count between 350 and 550 for the HIV-infected partner in a serodiscordant couple reduced HIV transmission to the HIV-negative partner by 96%.

Moreover, this year the WHO recommended that pre-exposure prophylaxis (PreP) — giving ARVs to protect people from HIV before potential exposure — should be offered to all those who are at substantial risk of HIV infection (previously, it was recommended that only certain affected populations, such as sex workers, men who have sex with men (MSM) and people who inject drugs, received PreP).

Earlier in 2015, the world exceeded the AIDS targets of Millennium Development Goal 6 — halting and reversing the spread of HIV, with new HIV infections falling by 35% and AIDS-related deaths decreasing by 41%.

Meanwhile, new ARTs continue to enter the market and new formulations are being researched.

All of these indicate that the fight against HIV and AIDS is heading in the right direction in terms of drug treatment and research. However, if further progress is to be made, this will depend on identifying everyone who has the virus, which continues to be a challenge — and stigma plays a large part in this.

So although we have come a long way, there is still more to do, particularly in terms of educating people and changing their attitudes towards HIV, if we are to ever see the last of this virus.

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Older HIV patients ‘need more support’

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Around a quarter of the 100,000 people with HIV in the UK are over 50

The older generation of people with HIV need better support to keep them well, nurses say.

About a quarter of the 100,000 people with HIV in the UK are aged over 50.

Two-thirds of these are on treatment for other long-term conditions – twice the rate for the general population, Terrence Higgins Trust data shows.

The charity and the Royal College of Nursing said this “silent generation” of older HIV patients need better co-ordinated care to stay healthy.

The issue is set to be debated at the Royal College of Nursing conference which is being held in Liverpool this week.

With people living for longer with HIV thanks to advances in treatment, nurses have reported they are seeing more patients with the condition seek help for conditions associated with old age.

‘Better co-ordinated’

RCN public health forum chairman Jason Warriner said: “For the first time, we have a generation of older people living with HIV and having to cope with the ageing process.

“They have respiratory problems, diabetes and heart disease. That is proving challenging. You have to be careful about drug interactions and other complications.

“Nurses need more training and we need to ensure patients are not getting passed around from health professional to health professional. Their care needs to be better co-ordinated.”

Dr Rosemary Gillespie, chief executive at the Terrence Higgins Trust charity, said: “As the people living with HIV in this country grow older, many of them will face a number of related health issues.

“They will be looking to healthcare staff to treat their condition sensibly and sensitively. Nurses have a central role to play in this, to ensure that people with HIV are not just living longer but living well, and receive the care they deserve.”

Stigma

Maurice Greenham was diagnosed with HIV in 1984.

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Speaking to BBC Breakfast, he said there was still a stigma about having HIV.

“It’s getting better because it’s being talked about,” he said.

“I’m fortunate. I feel comfortable with my diagnosis and I’m out as a gay man living with HIV and very few people of my generation do feel comfortable talking about HIV and indeed going to support groups.”

Dr Mark Lawton, a sexual health consultant at Royal Liverpool Hospital, said there was some data which suggested that some people who worked in care homes had a negative attitude, and also that there was an “overwhelming lack of knowledge and understanding”.

“There are still problems – people not getting tested because they don’t think they’re at risk of getting HIV and HIV doesn’t discriminate and we shouldn’t,” he added.

A Department of Health spokesman said: “It’s unacceptable that people diagnosed with HIV should face any form of stigma, discrimination or prejudice.

“Older people diagnosed with HIV should be able to access any additional health and social care services they need to ensure they can live independent and fulfilled lives.”

Story via BBC

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