Features | End the silence. End HIV.
In the UK alone there are over 98,000 people living with HIV and around 3,900 of those diagnosed are under 24 years old. LS talks to HIV sufferers who are now heading campaigns to stamp out HIV for good.
Jay is a haemophiliac and has Hepatitis C as well as being HIV Positive. There’s a perception that HIV can be a remote problem – suffered by other people, in other countries.
Jay is just one of the speakers who attends the events set up by Student Stops Aids. His HIV inevitably means he is required to take an abundance of medication in order to survive, but Jay lives in China, where there is no National Health Service. Early in his treatment for HIV the medicine cost him $1,000 per month – he had to work two jobs to cover the extortionate costs just to keep himself healthy and alive. Jay finally got in contact with an illegal group that handled generic, non-branded drugs, from Thailand and India, which reduced the cost substantially to $50 per month. However, this was not enough for him, “I wanted more of my peers to survive.”
His goal became more achievable in 2003 when China began to develop its own generic medicines and, just a year later, treatment for HIV became free in Jay’s area. Yet this was not the miracle cure the people who tested positive had hoped for. One drug made available was D12 due to its low production cost of $2 per person per month. However, the cost has been overshadowed by the irreversible side effects; some of Jay’s friends are “in wheelchairs for life” and despite the World Health Organisation banning it in 2010, it took two years and a “combined force” to get it removed from China’s pharmacies.
Yet, despite our country being at the forefront for change the UK is letting Jay down. Generic medicines, produced in Thailand and India – “the Pharmacy of the Developing World”- are “under attack” by the EU and Free Trade Agreements (FTA).
Nick, too struggles with this form of inequality. “I can accept my HIV and the discrimination but I cannot accept why I get treatment and others don’t.” Being from Glasgow, he is entitled to free treatment, unlike Jay who struggled to survive. On his 24th birthday life probably seemed set for Nick: he was moving to Australia to live with his long term boyfriend and he had a job lined up, a mortgage prepared and flights booked. All he needed now was his visa. But on his birthday he received a call telling him his visa was denied and that he had tested positive for HIV.
“Everything collapsed around me”, he admits. Nick looked online and tried support groups but the stories on the internet were about people who had partied too much and he “couldn’t relate to that”. Nick had “no knowledge of HIV” so went to the Royal Society of Medicine in London where he was told by a doctor that “if HIV were cancer, people would be dancing in the street with the advancements.”
But sadly there is too much discrimination and stigma surrounding HIV for people to be speak openly and positively about HIV. Nick has combated this by beginning his own writing support group for all who are HIV Positive and from that he found the process he needed in which to understand his HIV.
Nick claims that: “people don’t want to engage with HIV” and in Britain right now HIV treatment and prevention is being cut by the government. In 2013 Graham Norton was reprimanded when he and his guests wore World Aids Day Ribbons on his show. HIV is treatable but people need to know about it, how to prevent it and treat it.
There is a possibility HIV could become non-existent. A recent breakthrough in Antivirals in 2010 made a 98 per cent decrease in transmitting HIV. Yet treatment is not the issue in tackling HIV. Daisy, who is from Uganda calls for the “decriminalisation of sex work” which would be “a job to stop rape and the fear of arrest.” In Uganda if you go to a doctor you have to disclose what you do, with sex workers facing arrest and incarceration if caught. This is preventing the treatment and elimination of HIV, as Daisy argues “you cannot fight HIV with only one strategy.”
In Uganda, the advertising for HIV prevention encourages people to “abstain, be faithful, use a condom”, yet this doesn’t apply to sex workers as the client can pay to have sex without a condom. Daisy did not get HIV through her sex work but under much darker circumstances. Her life at 15 was dismal, after being raped and made pregnant she did not receive any support from her family and had to move to the city, away from her daughter. She was forced to get a job to support her daughter and herself.
Dreaming for a chance of education she let an older man support her so she would have the opportunity to better herself, but this was not as perfect a solution as she had envisaged. One night the man called Daisy to his hotel room where he appeared to her naked. This was so strange for Daisy as this man was her “father and in my culture is it wrong for a father to be naked, let alone have sex with his children.” But this is what the older man demanded of Daisy for the support he had been giving her. “I felt betrayed”, Daisy admits. After he raped her, Daisy went to be tested and found she was HIV Positive. She was too afraid to return to work and turned to prostitution as the only way to support herself and her daughter. Daisy is not an isolated case and this vulnerable group of people cannot be overlooked and treated with contempt. “Sex workers will never go away”, she says, and despite its illegality in many countries prostitution is rife and present and a major contributor to the continuation of HIV.
Daisy got very ill from HIV but “had to wait for someone to die” before she could have access to medication – “it was shocking to me.” After she received her treatment, she could return to work, her “life changed, I had strength, my skin cleared” but something resilient stayed within Daisy as she wanted “to prevent this happening to other sex workers.”
She became a councillor and reached out to a wider community and with the help of the Ugandan government her organisation has set up health clinics. Unfortunately, such measures are not enough and that is why Daisy is calling for the decriminalisation of sex work, which would stop the transmission of HIV, rape without punishment and discrimination.
Daisy, like Nick, has felt discrimination first hand; she was “kicked out of health insurance after them treating me for three years because they found out I was HIV Positive.” Progress is being made in developing countries but HIV will never cease unless sex workers are included in their strategies. It seems logical that sex work is no longer illegal as it doesn’t just prevent the spread of HIV but also protects the workers.
34 million people live with HIV globally and an overwhelming 95 per cent of them reside in developing countries. However, it’s something students can directly change. That’s where the Student Stop Aids Campaign comes in. Founded in 2003, the Student Stops Aids Campaign travels around universities with speakers, raising awareness of HIV and working alongside students to challenge governments and global institutions on how those with HIV are treated.
The charity calls for students to not allow “decisions to be made in our name”, but to demand transparency from our EU elective politicians and demand fairness in trade agreements. It is this transparency that The Student Stop Aids Campaign are working towards, either by writing to an MEP, signing a petition, or joining a protest on March 19 in London. HIV should not be stigmatised, hidden from or ignored, but challenged head on by those with the power to create change.