For over 25 years, HIV activist Shaun Mellors has had a long history of advocating for those living with HIV while battling against new diagnoses. Now the Director of Programmes and Technical for ViiV Healthcare’s Positive Action Programme, he shared with GCN his own story of being diagnosed at the age of 21, his journey towards self acceptance and how the eradication of stigma is a hugely important part of the battle.

In Ireland for the Positive Now conference for people living with HIV, Shaun was due to give a talk on community empowerment, and understanding why it matters in 2020. That sense of community, of reaching others who may be going through what you’re going through, who can offer advice or support, could not have been more necessary when Shaun himself received his own diagnosis in South Africa of 1986.

“I had a very unfortunate experience and very ignorant experience of being diagnosed. I was placed into a hospital ward in complete isolation, with biohazard stickers on it. At the time, there was obviously a lot of ignorance and people did not really know what was happening around HIV. I was still feeling very strong, very healthy, and all the images that I saw of people living with HIV and how people living with HIV were portrayed in the media, were always very sick, very gaunt.”

Shaun continued, “I was approached to participate in a campaign for the Department of Health in terms of being able to show that people with HIV were strong and healthy. At least that’s what I thought. They took photographs which appeared in four national newspapers as a full page picture. The headlines were ‘Shaun Mellors diagnosed with AIDS, a few years left to live’.”

“That was the first time that some of my extended family discovered that I was living with HIV, and so they stopped communicating with me because my family was, is, very religious and very conservative. It was harder to get opportunities to work, I lost my job as a waiter. I had challenges in terms of travel restrictions.” 

Despite those awful early experiences, or perhaps influenced by them, Mellors would become a dedicate advocate and activist. His list of appointments is hugely inspiring – he previously worked at the International HIV/AIDS Alliance (now known as Frontline AIDS) as the Director of Knowledge and Influence and Associate Director for Africa. He was also a co-founder of South Africa’s National Association of People Living with HIV and the Global Network of People Living with HIV, a Global Fund Board Member for the Communities Living with HIV delegation and co-chair of the International Task Team on HIV related restrictions related to entry, stay and residence. Despite that drive and determination, Mellors described how the biggest battles are still personal.

This #ValentinesDay, be inspired by #PLHIV and watch George and Somchai’s modern day love story. Retweet to share: thanks to treatment advances and a whole lot of love, #HIV is a smaller part of their lives. #HIVHasChanged pic.twitter.com/or5enaKj6x

— ViiV Healthcare (@ViiVHC) February 14, 2020

Shaun shared how stigma, and self stigma, are sometimes the largest hurdles that People Living With HIV face, Mellors described, “Self stigma has probably been one of my biggest challenges over the last 35 years. I grew up in a very conservative and religious community and family where there were a lot of prejudices against homosexuality, against anything that was other. So when I discovered that I had HIV, and I came out as being gay, it created a huge backlash, because my community and my faith and my family, at the time when I most needed their support, withdrew that support because they saw me as bad and sinful, and that what I had received in terms of an HIV diagnosis was a punishment from God. 

“I remember when I was probably 12 or 13, and we were driving in a car with my parents, and I saw what was obviously a young gay man walking on the opposite side of the street. He was very effeminate and I noticed him and pointed him out to my parents and they said, ‘Don’t worry about him, he’s sick’. 

“So when I eventually came out as being gay, those feelings and those sentiments of I’m sick, I deserve what I got, I’m no good, I will never be able to succeed, have been with me for a very long time. To try and really change those negative feelings towards feelings of self care and self love, that’s hard work, it takes a lot of time and a lot of investment to do.”

This issue has wider reaching consequences than just the personal, as Shaun elaborated. “We’ve seen time and time and time again that particularly key populations who are experiencing stigma and discrimination, it impacts on their ability to access services, to go for HIV testing, to be open with their healthcare provider.”

Young people deserve to be at the forefront of not only HIV but all the issues that are affecting us' – learn how the SPARK initiative began to fight #HIV challenges faced by adolescents. pic.twitter.com/vx7AegFnPS

— ViiV Healthcare (@ViiVHC) February 14, 2020

Shaun continued that the lack of women and heterosexual men going public with their statuses means that “there is still an issue in terms of how people living with HIV perceive society is going to react to their diagnosis. I think that, as a society, we need to understand why it is still so hard for those other population groups to come out in order to be able to address that, or else it is going to remain a silent epidemic amongst those populations, and people are only going to see one aspect of an HIV epidemic.”

A key component in the battle against stigma and new diagnoses is ViiV Healthcare’s Positive Action Programme, which provides grants to community-based organisations to address many of the structural and systemic drivers of HIV, and overcome barriers to HIV prevention, treatment and care access.

Shaun Mellors explained, “The vision and the mission of Positive Action is really focusing on creating healthy communities in a world free of AIDS. We do focus on what we call ‘priority population’; so adolescent girls and young women, children, and then the traditional key populations; gay men and other men who have sex with men, sex workers, people who inject drugs and transgender communities, because it’s often those communities who are isolated, who do not have access to funding, aren’t able to access services because they are criminalised or denied services because of their orientation or gender identity. 

“Our priorities for 2020 are focusing on HIV stigma, on ending paediatric AIDS, and on ending HIV in people who inject drugs, because that is the one area of the HIV epidemic where infections of HIV are increasing dramatically and resources for those communities are declining dramatically.” 

It’s an interesting year for ViiV Healthcare. I think for me, it highlights the company’s mission and vision of leaving no person living with HIV behind.”

So where to next in the battle, is education the key? “We need to reignite a sense of urgency in the epidemic,” Shaun shared. “We need to ensure governments put sufficient funding behind HIV commitments. For example in Ireland, they decided to roll out PrEP last November, but that’s only in a select few clinics with a potential rollout in 2020. I think that there has to be accountability, that it becomes available to anyone who wants to access it, as opposed to just the select few.

“We have to continue reinforcing the positive messages around prevention and treatment, but also ensuring that at the end of the day, we do not forget about the person who is actually living with HIV.”

You can follow Shaun Mellors on social media here and learn more about the Positive Action Programme here.