World AIDS Day: “We are normal people, living normal lives”
UZ Brussels wants to raise awareness of the lives of people with HIV through an app and a travelling exhibition. The project, Positive Stories, is supported by De Warmste Week. This year, the campaign focuses on people with invisible illnesses. "We urgently need to break the taboo," says Prof. Dr. Sabine Allard. "The stigma attached to HIV makes people lonely and afraid to get tested. We will never get the pandemic under control this way, even though it is medically perfectly possible."
In 2024, 662 people in Belgium were diagnosed with HIV. After years of decline, the numbers have been rising again since 2020. What stood out was that the number of new diagnoses among heterosexual men increased by 33 percent. Among gay men, the increase was “only” 15 percent. The new figures, announced by Sciensano on 20 November, caused concern among many HIV experts. Our opening question to Sabine Allard, head of Internal Medicine and Infectious Diseases at UZ Brussels, was therefore quite obvious.
How is this possible, after decades of prevention campaigns?
Sabine Allard: "HIV is no longer a death sentence, but a chronic disease that we can keep well under control with medication. Perhaps this has made some people less cautious. Or perhaps they think that the disease only occurs in the gay community. That is not true. In 2024, half of all diagnoses were made in heterosexual men and women. HIV can happen to anyone. Every face you see at work or in a shopping street could belong to someone with HIV."
To make her point, Sabine invited one of her patients to join her for this interview. Nadine is a sprightly 70-year-old from Brussels. She speaks openly and freely about living with HIV.
When were you diagnosed?
Nadine: "In 2011. I was 56 years old and had to undergo back surgery. The day after the operation, Dr Allard came into my room. They had tested my blood and I turned out to be HIV positive. I was completely taken aback. I thought: 'shit, what now?' I called my best friend in tears. She was there when Dr Allard explained everything to her a few days later. She told me that we could control the virus with medication and that I would be able to lead a normal life.”
Was that a relief?
Nadine: "Yes, it was. My friend said: 'you're not going to die. Take your medication, look after yourself and everything will be fine.' She continued to support me in the years that followed."
Sabine: "It helps a lot if you can share it. Otherwise, a secret like that can make you feel very lonely. That's why I advised Nadine to meet up with other people in the same situation when she suddenly started having a hard time two years after her diagnosis."
Nadine: "I had kept it from my mother because she had dementia. When she died, it suddenly hit me hard: I have HIV!"
How did that contact with other HIV patients go?
Nadine: "The first time was on a Sunday afternoon, with coffee and pancakes. I paced around for fifteen minutes before I could pluck up the courage to go inside. Someone welcomed me straight away. As I sat there and looked around, I realised: all these people have HIV, but you can't tell by looking at them. Nor can you tell by looking at me. That was an important moment. Later, I also counselled and reassured people with HIV myself."
"I had to look for another dentist"
Who did you tell?
Nadine: "My daughter found out two years later when she accidentally opened a letter from a patient organisation. At first she was angry because I hadn't told her. She wanted to tell her best friends and she also came with me to see Dr Allard once. She asked if I was going to die. No? Okay then... I shared it with some friends, but not with others. I don't always feel the need to. At work, I told them when I retired. My managers were surprised, but why should I have told them? It didn't affect my work."
Were you surprised by the reactions?
Nadine: "I had to find a different dentist. My previous one didn't want to treat me anymore, supposedly because he couldn't disinfect his equipment properly."
Sabine: "The stigma also exists in the healthcare sector."
Nadine: "I find it sad that even people with medical training are so poorly informed."
Does your medication have any side effects?
Nadine: "I had some liver problems when I switched to a new medication, but that was quickly corrected. I take one pill after breakfast, and that's it. Just like other people take a pill for their blood pressure or cholesterol."
Sabine: "The medicines are more effective than they used to be and cause fewer side effects. That one pill contains two active molecules, dolutegravir and lamivudine. They inhibit the virus in two different ways."
"The amount of HIV in the body becomes so low that you are no longer infectious"
The medication works so well that the virus is no longer detectable.
Sabine: "Yes, provided you take the medication faithfully. And when HIV is no longer detectable, it is no longer transmissible. My patients sometimes cry when I tell them they can no longer infect other people."
Nadine: "That was a huge weight off my shoulders. It gave me the courage to start a new relationship. My partner came with me to the consultation, and Dr Allard reassured him that he couldn't be infected. We've since broken up, but for other reasons. Thanks to medication, people with HIV can live 'normal' lives. A young woman I met in the support group was infected by her ex. She now has a new partner and two children with him."
Is this feasible for all HIV patients?
Sabine: "Wherever the medication is available. If at least 95 percent of HIV patients take medication and if the virus is no longer detectable in at least 95 percent of that group, the pandemic would come to a halt. That is, in fact, the global ambition."
Has HIV changed your life?
Nadine: "There's a before and after. The deep connections with fellow sufferers were heart-warming and hugely enriching. I appreciate being alive more than I used to. I have a four-year-old grandchild, so I'd like to stick around a little longer." (laughs)
"In our wildest dreams, we will be on stage at Pukkelpop and Tomorrowland next year"
What would you like to convey to people who do not have HIV?
Nadine: "That we are not monsters, nor are we dangerous, but normal people who lead normal lives. And that it can happen to anyone. We were looking for love, like everyone else. I did not know that my partner had HIV. We used condoms, but not that one time."
Sabine: "Who doesn't wear a seatbelt once when driving? But because HIV is sexually transmitted, it remains a taboo. That taboo must be broken. Many patients are afraid of how others will react and choose to remain silent. That's a shame. By sharing your experience, you lift a weight off your shoulders and learn to accept the disease. It also helps to share knowledge about HIV. Right now, that knowledge is lacking. It's as if the disease no longer exists. Some people don't think about it, while others still have images from the 1990s in their heads, of people getting AIDS and dying."
An image that is completely inaccurate today.
Sabine: "That's why we submitted our project proposal to De Warmste Week. We want to give people an insight into the daily reality of people living with HIV, via an app and a travelling exhibition. In our wildest dreams, we'll be at Pukkelpop and Tomorrowland next year."
HIV: from death sentence to cure
In 1981, AIDS was recognised as a new disease that was almost certainly fatal. The discovery of the HIV virus in 1983 enabled targeted research and development of treatments. The major breakthrough came in 1996 with the introduction of antiretroviral therapy that combined three active ingredients and was able to control the virus for the first time. After 2000, new classes of drugs emerged, which were more powerful and had fewer side effects. Since 2010, most patients have only needed to take one pill a day, containing two or three active ingredients. This therapy makes the virus undetectable and untransmittable. HIV has thus evolved from a death sentence to a chronic, easily manageable condition.
And there is more in the pipeline, says VUB researcher Thessa Laeremans. "The existing treatments will be improved, so that roughly one pill per week or one injection every six months will suffice. But the big breakthrough would be a cure. At VUB, we are working on two strategies: a therapeutic vaccine that activates T cells and an approach based on natural killer cells."
The first approach aims to strengthen the T cell response in the immune system of HIV patients to such an extent that their own immune system (i.e. without lifelong medication) can detect and destroy HIV-infected cells. Not easy, says Thessa. "The HIV virus is present in cells throughout the body, without those cells looking abnormal. This makes them difficult for T cells to recognise. There is no 'flag' that shows: HIV virus is present here."
In her PhD, Thessa researched a second strategy involving other cells from our immune system: natural killer or NK cells. "Unlike T cells, they do not need a specific 'flag' to recognise and attack HIV-infected cells. That makes them very promising. NK cells do have two disadvantages: relatively few circulate in the blood and they are less efficient at reaching HIV-infected cells. So we are looking for a method that both increases the number of NK cells and improves their ability to find infected cells."
Prof. Dr. Sabine Allard is head of the Internal Medicine and Infectious Diseases Department at UZ Brussels. She studied medicine at the VUB, received her PhD in HIV immunotherapy in 2012, and specialized in general internal medicine, HIV, infectious diseases (STIs), and complex infections. She heads the HIV Reference Center and the S-clinic for STDs.
Thessa Laeremans obtained a Master's degree in Biomedical Sciences from KU Leuven (2017). She obtained her PhD in 2023 and now works as a postdoctoral researcher at the VUB. Her research focuses on HIV immunotherapy, specifically the role of natural killer cells in controlling the viral reservoir and functional healing strategies.
