“People Almost See It as a Redundant Issue”: The Gryphon Interviews Youth Stop AIDS

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Youth Stop AIDS is a youth-led movement campaigning for a world without AIDS. It seeks to challenge the stigma surrounding HIV and AIDS and advocate for funding for new drugs and a cure for the disease. One branch operates within Leeds University Union. I sat down with the President of the Society, Ellie Lawson, about what the society does and why AIDS is still at issue in Leeds today.

Q: Could you tell me a bit more about Youth Stop AIDS? What is the society and how does it run?

ELLIE: We are their youth-focused initiative with 15 societies across England and Scotland. Although we all function as individual units, we’re part of one organisation. On a university level, YSA is a free-for-all in that we have the president, the co-committee and other roles concerning welfare and events, etc.  So it’s pretty much up to us how we want to raise awareness. Recently in first semester we focused more on trying to get a name for AIDS out there again because it hasn’t been on the agenda.

Q: How significant is the stigmatisation of AIDS/HIV within the University of Leeds?

ELLIE: I think the stigmatisation of HIV within the University lies with the fact that it isn’t treated as an everyday issue; it is seen as distant and consequently may not be treated in the same way as other sexually transmitted diseases. Sexual health provisions in Leeds are good and access is reasonably good if you know where to find this information. The information and the services are there, it’s just about making that known to the wider student population. For example, it should have been more visible that there have been cuts, as Leeds Student Medical Practice now does not provide testing directly. However, there are alternative places to go like the sexual health clinic in the Merrion Centre. I would say the stigmatisation of HIV within the university is just that it doesn’t tie in as well as it should do with other sexual health testing.

It has to be for Yorkshire MESMAC, who are one of the leading providers of HIV treatment and testing in Leeds to come in on specific occasions like HIV testing week for any kind of awareness of testing to be done. But I think the University are slowly recognising the fact that they are the means to implement change regarding the stigmatisation of HIV. The recent welfare officer, Matt, has done a lot to improve this and the recent cohort of execs in the LUU leadership race have tried to tackle sexual health. However I think there’s a lot more to do in terms of making sure people know they need to get tested in the first place. HIV is still relevant and it shouldn’t be something that is only an issue on specific days or weeks of the year.

Q: Why do think there has been this stigma surrounding AIDS?

ELLIE: I think there are two main reasons/causes for this stigmatisation of HIV/AIDS. The first is that it is no longer seen as relevant. The treatment of the disease is completely different now. We’re seeing figures on various media platforms saying that “HIV isn’t as prevalent anymore”. It’s almost as if it doesn’t exist. It was a huge issue back in the 1980s when we had the AIDS crisis. Because we’re no longer in an “AIDS crisis”, people underestimate its relevance and almost see it as a redundant issue. They do not educate themselves and this continues the cycle of stigmatisation.

The second is that our society treats HIV as something that has and always will be an exclusively LGBT+ issue. Wider society has become ignorant, over time, of the various routes through which HIV can be transmitted and demographics it can affect outside of the LGBT+ community.  It can be transmitted through blood passed down from mother to child and needn’t in every case the result of sexual activity. It’s seen as a purely sexual thing and I think that’s also related to the fact that we see sex as something that can’t be discussed. It could be that HIV and the stigma of it are more to do with people’s stigma on sex rather than their stigma on the disease itself.

Q: What should students be doing more of to tackle stigma/the problem in Leeds?

ELLIE: In universities such as Leeds there’s a massive wave of people who are interested in politics and I think it’s about directing and manifesting that interest in the right way. People need to know what’s happening now in the world of HIV/AIDS Activism and where their lives may intersect or impact that and how they can make others aware too. Really it’s an education thing. We’re all educated people and we’re all politically motivated in some way so it’s just about putting those two things together and not just helping yourself by learning about HIV but also helping other people.

Q: What are the biggest misconceptions regarding people’s attitudes to HIV/AIDS?

ELLIE: While the standard of living and life expectancy for a person living with HIV may have improved relative to the past, things in some ways are no better than they once were.

Transmission is a big thing that people don’t seem to get still. One thing that a lot of people don’t get is U=U i.e. undetectable means untransmittable. So if you’re on effective medication you won’t pass it on. HIV cannot survive outside the body so you’re not going to get it from a toilet seat that someone with HIV has sat on, which believe it or not, is a very common misconception.

Another important misconception relates to whom it affects. This misconception lies greatly in the fact it is seen still as a gay man’s disease, which it’s not. Young people are disproportionately affected by it, more so now than any other demographic – a statistic that you wouldn’t immediately assume to be the case. Yet, they are the only demographic where the figures are rising.

The problem with misconceptions such as those that I have expressed,  is that HIV is not seen for exactly what it is. It’s still relevant and people still die, not just here but in many countries across the world. You can still acquire HIV at any time in your life but the only thing that’s changed is that it’s not necessarily going to kill you.

Q: And what are the reasons behind these misconceptions?

ELLIE: Ignorance; a lack of understanding; a lack of awareness; the idea that if it’s not affecting you, it’s not affecting anybody else. You can completely buy into this whole stigma thing by the way that you were raised perhaps. If you’re not socialising with people who may be able to educate you on these things, then you’re not going to know any different. So I guess it’s a lack of self-motivation to find out what exactly is going on.

Q: What are the biggest problems that currently face YSA and other AIDS initiatives?

ELLIE: The main one that I know in particular with YSA but a problem that I’m sure impacts other AIDS initiatives is funding. Funding for events and campaigning has been really hard hit this year with the future of our annual Speaker Tour (where people living with HIV, or people associated with YSA across both the country and the world visit the individual universities involved and share their stories) being called into question.  This event costs £12,000 to run and Youth Stop AIDS had a cut of somewhere in the region of that amount this year so we have ultimately had to reconsider how we are going to hold such an important event going forward.

Q: And do you think that by 2030 we will be able to stop AIDS? Is it something that we are likely to see in our lifetimes?

ELLIE: It’s possible. We have a campaign called “It Aint Over” that focuses exclusively on the idea that we can see an end to AIDS in our lifetime. We know what we have to do. We have the tools like condoms and antiretroviral drugs and knowledge to end AIDS by 2030 but we need our leaders to make commitments to their promise to make it a reality. Countries like the UK, which are looked to for political leadership, need to step it up and send a clear signal that HIV continues to be a top priority. If HIV is prioritised and properly funded and has the necessary support, it would be possible to see an end within our lifetime.

Q: What is YSA doing within Leeds to tackle stigmatisation?

ELLIE: Our focus is to tackle stigmatisation through conversation. We wanted, in our first semester, to start conversations with students directly to effectively and openly discuss topics such as safe sex. This tackles the roots of misunderstandings about how you can contract HIV and how to prevent it.

This is why we chose to work quite heavily with institutions like Yorkshire MESMAC and we held an event called the Condom Packing Party at the University where we spoke at length about accessibility and prevention. We wanted to make students aware that they can get free condoms and safe sex packs from Yorkshire MESMAC and from a variety of different institutions in Leeds. We have worked with the Union and Tamsin Scott, the current Equality and Diversity Officer for this academic year and hosted our annual Youth Stop AIDS Big Weekend here on campus in December. It was an opportunity for all the YSA campaigners to come together and review the different models we use for campaigning and how we would tackle stigmatisation going forward.

Our focus thus far has been to get our name out there and to build sustainable partnerships with other organisations and students alike. With such a wide range of societies in Leeds, it is sometimes hard but the power is in the number of people you have and your collective voice.

Q: Are the efforts made by students at the University of Leeds visible on a wider scale?

ELLIE: One strategy that YSA use is to lobby governments. We get in touch with MPs and say, “This is what we want. We want to end AIDS by 2030. This is how we expect you to do it. Can you commit to that?” YSA has had representatives talk in Parliament and has been to Parliament itself. Given that there are so many YSA branches in London, they quite often do things in Westminster. They’ve got visibility to an extent as they’re visible in the circles of AIDS activism. Hosting the Big Weekend up in Leeds was great as it showed that it wasn’t just a London-centric thing. It was a display of the efforts being made by the society and its members and a positive sign of things to come. Are they visible as much as they should be? I don’t know. I don’t know if I have just have a cynical opinion where I believe we deserve more attention than we receive.

Q: Why is it important that young people in particular get involved with YSA?

ELLIE: People who are younger are often not as involved in decision-making and conferences as much they should be. We are so heavily affected by it and we are the future of the AIDS response. If the older generations bought into the energy, innovation and the passion of young people and we got the message about AIDS out there, then there is no reason to believe that we can stop transmissions of HIV by 2030.

Q: On a general scale, do you believe that HIV positive people are being failed by the current system?

ELLIE: Yes. Accessibility is a huge problem. Should HIV medication be available universally? Yeah. And why isnt it? Because institutions within the HIV response such as the government and those within the pharmaceutical industry have their own motives and justifications for their actions, which may not be compatible with the best interests of those people living with HIV. High drug prices are caused by patents, which grant pharmaceutical companies an exclusive license to produce a product. In the absence of competition, pharmaceutical companies can then charge whatever price they like, and they do. The rules about patents come from the World Trade Organisation’ Agreement on Trade Related Aspects of Intellectual Property Rights (TRIPS) but when making these rules the WTO also introduce important flexibilities that could be used in situations where a patent monopoly poses a threat to public health. The UK government should be using these flexibilities to override patent monopolies allowing generic manufacturers the license to produce a medicine, and through the competition created, drive the price of the medicine down but they arent and that is, I believe where they are failing people.

Q: Patents and profit motivation are two issues in the UK as the NHS, i.e. the taxpayers end up fronting the extortionately inflated bill. How significant is this problem?

ELLIE: The missing medicines campaign is all to do with the fact that the medicines for people who need them are missing. YSA’s commitments lie mostly with campaigning against this. The system for developing new medicines is failing. If someone has a patent, which says that they can’t share their medicines with anyone else, it limits competition and innovation. This means that vital drugs are either expensive or they are not available.

Q: The government have recently announced cuts of £85 million to the public health budget, meaning that AIDS funding has been cut across the board. Do you believe that attitudes towards AIDS have become complacent?

ELLIE: Yes absolutely. We see and hear all these things in the news of how people aren’t dying from AIDS anymore. On a public level, we have become complacent because we don’t understand it anymore. We don’t see it as relevant. But who is leading who in this situation? Are the government leading us to believe that it is no longer a problem because we no longer see it in the media? Or are the public and their attitudes the drivers behind this? In terms of their cuts to the health budget, you could argue that it completely lies with the government. How can you justify making all these commitments to tackling HIV in international treaties but then cut it so heavily?

Q: So has society forgotten how devastating the effects of AIDS before medication existed were?

ELLIE: You look at the Act Up movement in the 1980s and they were so radical in what they did. This meant it was easy for the general public to understand just how much it was affecting people. These days, people who have HIV are silenced. They lead normal lives so you don’t see the way that stigma affects them. An HIV positive person is no longer going to be rigorously questioned when signing up for an insurance scheme. It takes looking back to see how much more we’ve got to do. We know how far we have come so it’s now about looking at where we are now on the line of trying to stop the spread of HIV and AIDS.

Q: Due to the newly available medication, is it now considered a non-issue?

ELLIE: On Facebook pages, for example, you’ll see announcements like “PreP’s now available on the NHS” and although that is a really big win, there are still subfactors and questions to be asked: Who’s it available to? Who can access it? If you’re a poor individual who can’t afford a cycle of PreP, are you disproportionately affected and what happens then? So yes, if you can afford it, then it’s not an issue essentially because of PreP, you’re undetectable and therefore untransmittable. For those who can’t afford PreP, it is still very much an issue.

Q: This brings us to our final question, if there was one thing that every student reading this article should do/take away from this interview, what would it be?

ELLIE: Probably just that ignorance is a killer in this kind of situation. You can be ignorant by not getting actively involved, but you can also be ignorant in the way you look at the AIDS problem. We need to challenge the mental stigmatisation of HIV and AIDS. To ignore it and pretend it doesn’t exist is complacent.