“I couldn’t see myself as a person who deserved to have the same treatment as someone else. I felt less worthy than the general population. That should never be the case”. Daniel Santos is an activist, originally from Brazil. Here, he reflects on his journey from denial to acceptance as a person living with HIV for sixteen years, describes how he now owns his status and looks ahead to the issues facing those ageing with the condition.
Time is alleged to lend perspective. It is also considered a healer. Both claims hold true for Daniel as he describes his journey. Looking back on how he felt following his diagnosis, he is unambiguous: “I was in complete denial. I started living in my own little world, a very depressing world. I decided to completely isolate myself. I didn’t talk to anyone about it, I didn’t disclose it to anyone. I had no drive to have sex with anyone because I didn’t know how I could have a sexual relationship knowing I could possibly transmit the virus to someone. I thought my life was over”.
Daniel received his diagnosis shortly after relocating from his town in Brazil to London. The move allowed him to eschew the ideology of his Christian upbringing and grasp the opportunity of living more freely, in accordance with his identity. The air, thick with optimism and possibility – as felt by many queers as they come of age – was soon cut short, punctured by the “curveball” of a HIV diagnosis.
It arrived at a time prior to the undetectable=untransmittable movement, a campaign grounded in scientific fact whereby a person on effective treatment can have all the sex they want and not pass on HIV. Rather, young and without access to information – Daniel thought sharing a glass of water or kissing represented a viable route of transmission for the virus – he was traumatised.
The only frame of reference for his diagnosis was, “people at their most vulnerable in their hospital beds dying with AIDS because that is the image I was brought up with by watching the news at a younger age”. One of most difficult things for Daniel at the time of his diagnosis was reconciling what he describes as “the face of HIV” – that picture he just described – with his own self-image as “a healthy, perfectly functioning person”. As progress in science and education has revealed, no such “face of HIV” exists.
A “confusion of acceptance” surrounded Daniel when he began his medication. That is, the realisation “that I can live with HIV”. The transition from denial to acceptance to owning his status – facilitated by antiretroviral therapy [ART] and compassionate healthcare – is frankly beautiful to hear him describe, which he does in no uncertain terms: “Being a person that lives with HIV means that I do not pose a threat to anyone, I feel empowered by that. I can lead a normal life, and regardless of being in a relationship or not, I am a form of protection”.
What exactly does he mean by that? “When a negative person takes their PrEP pill, they are protecting themselves against HIV. If a positive person takes their medication on a daily basis and they've been on it for over 6 months then that too is a form of protection”.
Today, drawing on his own experience, Daniel’s mission is to get people to sit up and listen to this piece of science: “I want every single HIV positive person – whether recently diagnosed or still in the closet with their status – to know that they are not a threat to anyone. “If you are a person living with HIV and reading this now, I just want you to remember you’re not alone. You and I are both privileged and survivors of an epidemic that took the lives of nearly 39 million people since it started”.
He continues: “Today according to UNAIDS there are over 37.5 million people living with HIV and 44 per cent have an undetectable viral load. This is over 14 million people that, like myself, can’t pass the virus on to their sexual partners by simply taking their ART medication everyday. This is the game changer fact that allow us all to live a more abundant life which is a birth right of every human being.
“That’s what prompted me to be an activist. Because I battled through the years with self-discrimination, [thinking] my life and my world had ended, running away from that reality instead of facing it. We should face the challenges in our lives by standing up to them and looking at the scientific evidence, empowering [ourselves] through knowledge and putting knowledge into practice. Accept yourself, instead of allowing other people to accept you or not. This is what I did. I embraced this new Daniel, I embraced the fact that HIV is just an undetectable part of me and I am a living, functioning person”.
This is Daniel’s first time to recount his story in full, delivered at once with vulnerability and strength. Tears are fought back before being surrendered to, composure is sought. He is visibly proud of the road he has travelled. To witness that as an interviewer is a privilege.
Not content with campaigning around a single issue, Daniel has now set his sights beyond viral suppression, toward the topic of HIV and ageing. Simply put, people living with HIV who take their medication are now living full lives. Now that the virus can be effectively suppressed, what are the challenges people face? At the moment, there are perhaps more questions than answers.
“As a I grow older, as I know my life expectancy is not six months, not six years, but in line with the general population, is the health system prepared with innovative, patient-centred, cost-efficient and sustainable approaches to treat a person with HIV as they age? Does our health system have the resources to fully screen us for all of the co-morbidities and co-infections a person with HIV may face [people living with HIV are more prone to cardiovascular and kidney diseases, for example]? Or for the mental health issues that a HIV diagnosis could have generated?”.
While the need for integrated healthcare for people living with HIV is a given, the struggle to achieve the same will be uphill. With resourcing basic sexual health screening services already a challenge, achieving such enhanced care seems daunting. However, committed activists like Daniel offer optimism and reassurance. He wants people to become aware of the treatment they deserve and demand it. Invited to the “HIV Outcomes: Beyond Viral Suppression” initiative in the European Parliament late last year, he urges people to familiarise themselves with the recommendations which can be accessed here – and to fight for their introduction.