AIDS Took Him One Year Before the Cure

Bérenger September 1970 - March 1995

December 1st comes back each year like a riptide. World AIDS Day. For most people, a reminder. For me, a face.

Bérenger was born in 1970. We grew up as brother and sister. He died in March 1995, at twenty-four, in a world where treatments were still only promises. The disease took him before AZT for everyone, before stabilized dual therapies, before the triple therapy that would change the course of lives.

He often said, looking at his T4 results: "I feel like a car that has to climb a hill, but has no gas left." He wasn't complaining. He was stating a fact. It summarized everything.

We lived in continuous pursuit. The slightest article, the slightest scientific rumor became a thread to hold onto. When we learned that a triple therapy was being tested, we wrote to the minister. An almost naive request. His response arrived one week after Bérenger's death. Science was advancing, but not for him.

And then there was life, stubborn, obstinate. Every moment of respite, we went out dancing, as if the night could keep the disease at bay. We partied on a volcano, convinced that if it was the last time, it had to count.

After his death, dates closed like doors. He didn't see his brother get married. He didn't see his niece born. He wasn't at my wedding, even though I felt him beside me. He will never know my children, or the life I lead today. My sister, his mother, did not survive his absence. She died one year after him. Some losses have no refuge.

I often think about the doctors, the nurses, the friends who held the line with us. I also think about my father, a man from another era, who found the right words: no matter what the illness was, no matter what the world said about it, Bérenger would remain his grandson and he would fight for him until the end. Vincent, his brother, became a good and luminous man. I believe Bérenger would have been proud.

The Inequality in front of AIDS Persists

Thirty years have passed. In July 1996, one year and four months after Bérenger's death, triple therapy was presented at the Vancouver conference. Here, today, PrEP exists. Treatments allow people to live. We sometimes forget what it meant to be sick before 1996.

But elsewhere, nothing is simple. Sub-Saharan Africa accounts for 65% of people living with HIV worldwide. In Eswatini, 27.5% of the adult population lives with the virus. In Lesotho, 20.5%. In Botswana, 19.7%. In South Africa, 16.6%. In these countries, entire generations are decimated.

Without treatment, an HIV-positive pregnant woman has a 15 to 30% risk of transmitting the virus to her child. With breastfeeding, this risk rises to 45%. With appropriate treatment, this rate drops to less than 1%. Yet in 2024, 120,000 children were still born with HIV worldwide. Access to therapies remains unequal. Zip code still determines who lives and who dies.

The Vaccine We're Still Waiting For

AIDS is not a story from the past. It is a matter of justice. A matter of life. A matter of common world.

Research is advancing. Promising vaccine candidates are in Phase I clinical trials. In France, the Vaccine Research Institute team is testing CD40.HIVRI.Env. In the United States, the HVTN 133 trial shows encouraging results. But no vaccine is in Phase III. Nothing is ready.

And meanwhile, 1.3 million people were newly infected with HIV in 2024. One person dies of AIDS every minute.

We need a vaccine, not to celebrate a victory, but to repair an inequality. So that the future no longer depends on the accident of birth or zip code.

We Continue

If I write today, it is so that Bérenger is not swallowed by forgetting. So that my sister is not forgotten. To remind that research only saves when it arrives in time.

And to say that we must continue. For them. For us. For our children. For all those we don't want to lose anymore.

Support research for an AIDS vaccine. Support the sick.

To donate:

In Quebec:

• Fondation québécoise du sida: https://fqsida.org/

• COCQ-SIDA: https://www.cocqsida.com/

In Canada

• Canadian AIDS Society / Société canadienne du sida : https://www.cdnaids.ca/

• Casey House (Toronto) : https://caseyhouse.com/ 

• Fondation canadienne de recherche sur le sida (CANFAR) : https://canfar.com/ 

In the United States:

• amfAR (American Foundation for AIDS Research): https://www.amfar.org/

In France

• ACT UP France : https://www.actupparis.org/

International:

• UNAIDS: https://www.unaids.org/en/donate

Let's do it for those we've lost. Let's do it for those still living. Let's do it because it's right.

Three Films to Watch:

• Philadelphia (1993, Jonathan Demme) - The first major Hollywood film to address AIDS, with Tom Hanks and Denzel Washington

• Les Nuits fauves / Savage Nights (1992, Cyril Collard) - A raw, autobiographical portrait of living with AIDS in France

• 120 BPM (Beats Per Minute) (2017, Robin Campillo) - The story of ACT UP Paris in the 1990s, their fight, their rage, their love

In the loving memory of Bérenger and Jacquie

Us