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Interview: living with HIV, the dangers of stigma, and the mission to eradicate HIV/AIDS by 2030

ByDhruti Chakravarthi

Mar 3, 2018

The Student speaks to HIV/AIDS activists Kennedy Mwendwa, Michael Nugent, Sarah Mary (name changed to protect identity) and James Cole.

Youth Stops AIDS is a youth-led movement campaigning to end AIDS through creative action and deliberation. Each year, the organisation hosts a UK-wide speaker tour to increase awareness through sharing the powerful stories of young campaigners living with HIV.

During the Edinburgh leg of their marathon 2018 speaker tour, The Student had the chance to interview the speakers about the discrimination and stigma associated with HIV/AIDS, UNAIDS’ mission to end AIDS by 2030, and how the problem can be tackled through grassroots activism.

A cyclical relationship still exists between HIV and the stigma attached to it, with discrimination and abuse directed at people living with HIV and AIDS being triggered by strong baseless prejudices and taught ignorance. Kennedy Mwendwa, 24, contracted HIV whilst working as a sex worker at the age of 16, after being thrown out of his parent’s home because of his family’s anger at his sexuality. He explained the various and painful forms of discrimination he

and painful forms of discrimination he faced throughout this experience to The Student.

“It is very hard to receive services. The community is structured on very restrictive laws and barriers. For instance, youths below the age of 18 are not allowed to receive sexual-health and reproductive services. This is especially a deterrent for young-sex workers who do not receive support from their parents. They cannot receive simple sexual reproductive services just because they do not have anyone to consent to.” Kennedy is currently working with national and regional NGOs to demolish these barriers and educate younger generations on several significant elements of living with HIV.

According to the UNAIDS statistics from 2015, in 35 per cent of countries with available data, over 50 per cent of people have experienced  discriminatory attitudes towards those living with HIV.

However, the speakers’ varying accounts revealed the multiplicity of stories of living with HIV, as the experiences of Sarah Mary, who contracted HIV as a baby, stood in contrast to those of Kennedy. When asked about whether she felt discriminated against while receiving any clinical services, Sarah mentioned how fortunate she was to not have been subjected to such prejudice from her caregivers.

Despite not feeling deprived of adequate clinical services, Sarah struggled to find an efficient and proactive mental health service to help combat her depression when she moved to Edinburgh at the age of 18. She commented on the way global funding for mental health services have been cut short massively, and how qualified therapists were not getting paid to treat her. When asked what could be done to transform this system, Sarah strongly emphasised the importance of generating awareness and understanding of mental health issues from the grassroots up.

The World Health Organisation strongly recommends integrating the psychosocial needs of people living with HIV into care services. This includes the prevention of mental illness, and assistance with employment. “Just be the hero to your own story. Don’t be afraid to ask for help”, is the powerful message that Sarah aims to spread.

As part of the Sustainable Development Goals, UNAIDS is leading the global effort to end AIDS by the year 2030. James Cole, the Youth Stop AIDS national coordinator, shared what this initiative means to the global community: “We have made so much progress in the last 30 years. Thankfully, now, the end of AIDS is in sight. It is absolutely amazing to have witnessed the UN leaders get together to construct the Sustainable Development goals with a target of ending AIDS by 2030 in an achievable manner. Unfortunately, at this critical time, when we are so close to ending the epidemic, government leaders have taken their eye off the ball.”

In order to facilitate greater governmental involvement and ‘refocus’ the priorities of those in power, Youth Stop AIDS has launched a campaign entitled ‘It Ain’t Over’. The goal of the campaign is to urge the UK Government to lead the world in combatting HIV, whilst also encouraging government agencies to ensure that young people play a leading role in the design and implementation of preventative programmes.

This campaign is particularly important at a time when the UK Government has decreased funding for the prevention of HIV by an alarming 22 per cent. However, James points to the successes of Youth Stop AIDS as, thanks to the organisation’s efforts, “the government has now confirmed that a minister will be attending and deliberating at the International AIDS Conference; a platform that uniquely provides for the intersection of science, advocacy and human rights”

James also encourages support for a further organisation, the Robert Carr Network Fund (RCNF). James sees their focus on the strength of collaborative societal networks as key to the prevention of HIV/AIDs, aiding the removal of barriers to access HIV-services. Furthermore, this network aims to protect the rights of inadequately served populations globally. Those within these populations include people living with HIV, LGBT+ individuals, sex workers and prisoners.

“Unfortunately”, James notes, “RCNF’s [government] funding runs out next month. The US is currently the main contributor to their fund pool, but with their current outlook and rhetoric towards marginalised groups, a wearying picture with no guarantee of receiving any financial support is foreseen.”

He suggests that the UK government must give a ubiquitous pledge to push all stakeholders to step up at this critical time to ensure that the SDG targets are fulfilled. Otherwise, we will be faced with a HIV epidemic that will only worsen.

Michael Nugent, from Glasgow, is also living with HIV. For Michael, grassroots change is a necessity, as he recognises that the beginning of epidemics always “fuel a sense of fear in people”. He believes that education is key and that awareness should be taught “in a manner that enkindles a culture of empathy and conscious understanding.”

Furthermore, he fervently stresses the importance of asking the right questions to those with HIV/AIDS, encouraging readers to think and read critically when approaching the subject, obtaining a panoramic perspective on the sensitive issue. The shift to a digital consumption of news has led to a ‘clickbait’ culture “compromising the quality of information our society receives”, Kennedy agrees: “It is important for the media to be sensitive and not to simply sensationalise their news.

“We all have beautiful stories to share. All you have to do is listen”.

Image: Rachel Lily/ Restless Development

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