In 1986, every haemophiliac in Malta was asked to undergo a blood test. There were no explanations, simply a devastating result – all 28 patients had been infected with two life-threatening viruses, hepatitis C and HIV. Just seven remain alive today. Ariadne Massa speaks with a survivor.
Clyde* walks with a slight limp and his eyes are bloodshot, but there are no other visible indicators of the ravages that three serious diseases have had on his body.
“I never gave up and as much as possible I try to live normally,” he says with a shrug.
Living normally though has been a constant struggle, from sacrificing his dream career, to suffering severe side effects from the drugs, undergoing frequent operations and being weighed down by the secret of being an HIV survivor.
“There is still stigma and ignorance hanging over HIV. Few can handle the truth,” he adds.
Clyde was born with haemophilia, a condition that impairs the body’s ability to control blood clotting, and the “story of my life was sealed”.
As a little boy he was shuttled to hospital three times a week. Treatments soon started to improve and Malta started importing freeze-dried concentrates made from human plasma from the US to control the bleeding.
Everyone was left to fend for themselves… and most of us started slowly dying off
In 1986, at the height of the AIDS hysteria, all the Maltese undergoing treatment for haemophilia were asked to undergo a blood test, but nobody proffered an explanation. When the results emerged, patients and their families were called in to a small room and given the grim news – all 28 patients had tested positive for hep C and HIV. Nobody was spared.
“I was still a teenager but I remember my parents returning from that meeting saying how they were all gathered in a tiny room and told: ‘You have HIV and you’re going to die... Your life is over’. What a cruel way of breaking the news.
“Everyone was left to fend for themselves… and most of us slowly started dying off.”
Suddenly, Clyde had to bury his secret for fear of becoming a pariah among his friends.
“Everyone had heard of AIDS and it was like the plague. On the pitch we’d make jokes such as ‘why didn’t you pass me the ball, I don’t have AIDS you know – all the jokes were about AIDS,” he recalled.
Luckily he had no outward symptoms, but just as puberty’s raging hormones were kicking in, he was having to digest the magnitude of his condition.
When he turned 20 he started dating, but he would only confide in those girls he was planning on getting serious with.
Was he not endangering their lives by not being upfront about his condition?
“I took all the precautions but there is still too much ignorance out there. Few can handle the truth. When things got serious with a girl, I’d tell her about my condition and that I couldn’t have children. In those days they’d seek advice from a priest who always encouraged them to break it off.”
In 1996 his condition became critical and he was resigned to following in the footsteps of the haemophiliacs before him… to the grave.
“I had accepted my fate. During the six months I spent in Boffa Hospital I had planned all my funeral arrangements. I was in so much pain that for me death would have ended all the suffering; I’d have finally rested,” he says.
That was when his doctor advised him to seek treatment abroad. His family pooled all their savings and booked tickets to what they feared what be Clyde’s last journey. Three months of treatment in the UK resuscitated him and he returned to Malta focused on living as normal a life as possible. He managed to partially follow his work dreams; and married “the most beautiful woman” in his life – though when she left him after seven years “HIV became chickenfeed compared with losing her”. As he gets older, his joints are weakening as a consequence of haemophilia and he fears he will soon be confined to a wheelchair, but few things stifle his determination to soldier on.
“I have one message: never give up!”
* Names have been changed.
Consultant Charles Mallia Azzopardi: “Condoms are not in fashion. The problem is not availability but the perception that condom use negates sexual satisfaction. Any health campaign has to target and deal with this issue.”
HIV remains one of the biggest preventable killers worldwide. But Mater Dei Hospital consultant Charles Mallia Azzopardi believes new treatments are lulling people into complacency.
1. Do you fear people are being lulled into complacency as new drug treatments slow the virus’ onslaught?
Highly effective anti-HIV medications have now rendered the virus from a uniformly fatal disease into a chronic controllable disease with an almost normal life expectancy. This is obviously very positive, however, this has undoubtedly resulted in complacency. When faced with a sexual encounter a significant proportion falsely rationalise that it’s worth taking the risk and forget the problems – health, psychological, social – associated with living with HIV.
2. What are the latest figures for HIV/AIDS?
Our clinic at Mater Dei Hospital caters for between 300-350 patients. HIV-positive people are living longer but over the last three years we have noticed a significant increase in infections, especially among the gay community. This year, to date, we have had a record of 46 new infections.
3. Figures from the GU Clinic repeatedly show that more than half of all those who visited the clinic never wore a condom. Where are we going wrong?
There is absolutely no doubt that proper condom use significantly reduces the chances of sexually transmitted diseases, including HIV. However, condoms are not in fashion. The problem is not availability but the perception that condom use negates sexual satisfaction. Any health campaign has to target and deal with this issue.
4. Are people equipped with the right knowledge? Or are they being short-changed?
We need to aggressively target those at high-risk, i.e. those with multiple unprotected sexual contacts. In Malta, through aggressive free needle initiatives, we have not had major problems of HIV in our injecting drug community.
On the other hand, studies have consistently shown that HIV-positive people can be rendered almost non-infectious if treated with the appropriate medications, which reduce their viral load to undetectable levels. This will entail a nationwide screening campaign to identify and treat any positive person to interrupt transmission.
There are medications that people at high-risk can take to reduce the likelihood of getting infected. These are known as Pre-Exposure prophylaxis (PreP) and come in the form of one pill a day and are taken before the exposure. There are other medications known as Post- exposure prophylaxis (PEP), which are taken after a high-risk sexual encounter, which very significantly reduces the risk of HIV infection. Unfortunately, these medications are still expensive.
5. Do people out there know what precautions to take? Or are they simply taking too many risks?
Simply taking too many risks.
6. Are the health authorities doing enough?
Authorities can never do enough.
7. Profound misunderstandings remain. What are the most frustrating examples you encounter of this? And what angers you the most about these misconceptions?
Whoever chooses to embark on unprotected sexual encounters is playing Russian roulette. You can be unlucky and become infected after just one encounter. There is no doubt that the more you play the game the more you face the risk of infection.
These days there are apps that make it possible for somebody to find an anonymous sexual partner and have sex during the midday break!
What frustrates me the most is the very high risks people are willing to take, not necessarily when under the influence of alcohol or drugs.
The stigmatisation that individuals with these infections face is still very high. It’s amazing how perceptions change when the problem hits closer to home – in such circumstances attitudes seem to change for the better overnight!