Life after an HIV diagnosis: ‘I don’t want it to be my identity’

There are 754 people known to be living with HIV in Malta, according to figures tabled in parliament last month—a 65% increase over five years. 

The number has risen every single year: 457 people were known to be living with HIV in 2020, 539 in 2021, 612 in 2022, 650 in 2023, and 696 in 2024. 

Thomas—not his real name—is one of the 754 known to be living with HIV in Malta today. 

“Things were very different when I was diagnosed. The way I found out was shocking. I was getting these really bad fevers, night sweats, feeling very weak, ill, you know, there were times when I couldn’t sleep properly,” Thomas tells me as he recalls the bad news he received 13 years ago. 

He explains that his body began to shut down and that was when he decided to go to hospital to try and figure out what was wrong. “After a few days of running checks and receiving various diagnoses, I was lying in a hospital bed, not knowing what was going to happen to me,” he tells me. 

After a couple of days, doctors decided to run an HIV test. It turned out positive. “I wasn’t just HIV positive, I was actually AIDS positive, because my CD4 count was ridiculously low, and the viral load was shockingly high. Basically, I was pretty much at risk of dying,” he says. 

However, he adds that although it was a shock, the diagnosis gave him hope, because the uncertainty he had been living with was finally over. “I said, okay, this is something maybe I can bounce back from,” he recalls. 

After being diagnosed, Thomas began taking antiretroviral medication, which came with its own challenges. The body required time to adjust, and at the time, the routine included taking six pills a day. 

“I work in finance. And it was very hard to come up with excuses and explain why I was in hospital, not being able to return to the office and just simply say, ‘look, this was the issue’,” he says. 

The stigma 

Thomas felt pressure to hide his diagnosis due to the stigma surrounding HIV. He says it was an overwhelming task deciding who to confide in. The lack of supportive platforms or open dialogue around HIV made the experience even more isolating. The stigma made it feel like opening up could unleash unpredictable consequences, “like Pandora’s box”. 

Luckily, Thomas had a friend living abroad who had gone through a similar experience, and this person provided vital emotional support. However, he was unable to tell his parents on his own terms, because a discharge letter sent to his parents’ address, where he was residing at the time, disclosed his condition. 

“She [his mother] opened it [the discharge letter], and that’s how she found out the underlying reason for what made me ill. It was a shock for her, especially since she had a cousin who’d died from AIDS in the 1990s. However, I was fortunate enough that she reached out to my sister, who explained to her that things were different now.” 

Thomas says that he was lucky because his family accepted him without any hesitation. Since then, he thinks of his diagnosis as something he has to live with and accept. However, it doesn’t define him. “I didn’t want it to be my life, my identity,” he insists. 

Medicine has come a long way 

Thomas speaks about how life-changing it was when his medication went from six pills a day to just one. He described developing paranoia out of fear of missing his medication, and how it was constantly on his mind. Changing over to the one-pill-a-day medication was a “massive relief”. 

However, he still worries about medicine shortages. “The hospital only gives us a supply for two months. And you can only refill a few days before you run out, which leaves people in fear of running out of medication.” 

This fear is not unfounded, as in 2020, Malta experienced a critical shortage of HIV medication, leaving several individuals without their life-saving treatment. 

Furthermore, Thomas speaks about the stigma that still exists. “I think it’s down to a lack of education. Even just the stigma that only gay people can contract HIV. It’s a pandemic that affects all genders, all sexual orientations, and all ages. No one is spared.” 

‘We thought we were getting somewhere’ 

Checkpoint Malta spokesperson Jackie Roberts expresses her frustration to MaltaToday over the Health Ministry’s continued inaction amid a concerning rise in HIV cases. She notes that as an NGO, they had placed hope in the launch of the Sexual Health Strategy and after more than a decade of waiting, they expected more decisive government action. The strategy was launched in December 2024 and covers the five-year period until 2030. 

Since then, the NGO has reached out to the ministry countless times, asking when Pre-Exposure Prophylaxis (PrEP) and Post-Exposure Prophylaxis (PEP) would be added to the national formulary list. However, they say they haven’t received a concrete answer. “We’ve heard nothing concrete. There was talk of it being February, then July, and so on.” 

PrEP is a preventive treatment aimed to minimise the risk of contracting HIV. PEP treatment is taken within the first 72 hours of suspected exposure to HIV and involves taking a 28-day course of antiretroviral medication to prevent the virus from establishing itself in the body. 

Not only was the introduction of PrEP and PEP listed in the strategy, it was also promised in the Labour Party manifesto ahead of the last general election. 

“We thought, when we submitted our proposals during the consultation period, that we were being listened to. However, despite assurances from the ministry, we do not feel enough is being done to prevent new infections,” Roberts says. 

She adds there isn’t a clear path for people who want to get tested. “People don’t know where to get tested. And when they do, there are delays and confusion. It’s not easy for people who aren’t experiencing symptoms to get tested.” 

This is despite the fact that the World Health Organization (WHO) recommends getting tested for HIV at least once a year if you are sexually active. The WHO guidelines also suggest that those with increased risk factors, such as having multiple partners or engaging in unprotected sex should benefit from more frequent testing, such as every three to six months. 

This confusion, Roberts adds, extends to contraception, which, according to her, the onus “is always put on the public”. She asks: “Where is the initiative from the government?” 

Roberts says that while NGOs and community organisations, including GIU, are doing their best, the activist stresses: “We need leadership at a ministry level to push this through.” 

Comparing Malta’s situation to the UK, she notes that self-testing is widely available there. “The UK has support structures. We don’t have a system in place,” she notes. 

Although access to testing has improved and conversations about HIV are more open, stigma persists. “Hate speech, stigma, a lack of training among healthcare professionals, GPs, pharmacists—it’s still there. Many don’t understand PrEP or PEP,” Roberts says. 

Fear remains a barrier, Roberts says. “People worry: what if I test positive? What happens to my residency? People are frightened to even go to hospital.” 

Checkpoint Malta, MGRM and other NGOs in this sphere are also calling on the government to introduce an opt-out system for HIV testing at Mater Dei Hospital. They argue that this would increase the rate of testing and lead to earlier interventions for people who test positive. 

Health Ministry replies 

Responding to questions submitted by MaltaToday, the Health Ministry said that the current HIV treatment tender is being renegotiated since the previous one is due to expire. 

“The new procurement process is set to include both PrEP and an additional entitlement to free PEP, as was included in the Sexual Health Strategy. This process is underway,” a spokesperson said. 

Asked about the opt-out system recommended by NGOs, the ministry spokesperson said that “various means to ramp up HIV testing are being considered by a technical working group, including increasing HIV testing opportunities both within and outside of health settings, considering available resources and feasibility of implementation.” 

The ministry said that the aim is to provide additional opportunities for HIV testing “in line with the need to meet the accelerated HIV targets for 2030, particularly for key populations.” 

* The name of the first interviewee has been changed to protect his identity. 

Where to get tested 

People can book an appointment by emailing [email protected]. They can also contact the GU Clinic for a test appointment for all STIs, or ask at their pharmacy for a self-test kit. People living with HIV who are seeking community can contact [email protected].