A Profile in Courage: How Benoît Lives with HIV

Benoît is an active man in his 30s. He loves to laugh. He also loves going to the theatre, and nights out with friends. And he has a lot of friends.

By Delphine Caubet   File: STD-Aids

Oh yes, I almost forgot: Benoît is HIV positive.

It all began in 2002, when he was 23. He’d graduated from Cegep. Ready to enter the working world, he applied for a private insurance policy when a routine blood test bore bad news…

He was in shock. He couldn’t stop crying for a week. “But I finally decided to stop crying and take matters in hand,” he recalls. This young resident of St-Jean-sur-Richelieu headed to Montreal and got in touch with relevant groups and associations to learn all he could about his condition.

Getting that life-changing blood test as young as Benoît did is the exception rather than the rule. According to COCQ-sida, the coalition of Quebec’s community-based AIDS organizations, close to 1/4 of infected persons are only diagnosed when they are at the full-blown AIDS stage.

Death Sentence?

Guy Lacasse is the former head of Maison Plein Coeur, an AIDS help group, and he’s seen what it’s like to get that dark diagnosis. “It’s like getting a prison sentence,” he observes. “It can provoke anger and depression. A sufferer can contaminate others without even knowing it without a good follow-up. Here, we work with people to make sure that being HIV-positive doesn’t define who they are…”

For Benoît, HIV has meant that his blood platelet levels are problematic. “But the medical aspect has improved a lot,” he explains. “At first I was experiencing a lot of side-effects because of the medication. I was either insomniac, or sleepy. Nowadays I have way less side-effects. Maybe that’s why the illness is sometimes perceived as no big deal, as if it’s a thing of the past, because our quality of life is way better.”

Indeed, today’s HIV-positive patients enjoy an average life expectancy of over 70 years. And the risk of transmission has been reduced by 96%. But all these improvements should not lull society into a false sense of security. There are still issues like drug costs, for example.

For those who work, Quebec’s health insurance system will reimburse patients for part of their drug costs. But they can’t always rely on private insurance to cover the rest. Few if any insurance companies will accept an HIV-positive policyholder. Drug costs can be as high as $900 a year. That’s a lot of money for a low income earner.

“Some people stop taking their medication because of costs,” says Lacasse. “And when they stop, their virus count jumps.” Some cases can prove dramatic. A few years ago, Maison Plein Coeur helped a young woman who was HIV-positive. Even though she worked, she could not always afford her medication. Because she would stop and start her treatments, she developed an immunity to therapy. She died at age 21.

That’s not a daily occurrence, but it does happen. And it demonstrates the pressure that working HIV-positives can be subject to, explains Lacasse. “They’re fragile. They can go off the rails fast. We have to do all we can to keep them employed.”

Witch Hunt

HIV signaled the end of Benoît’s professional career. Trips to and from hospital, and the side-­effects of his treatments, forced him to quit his job at a school. For others, a career can become complicated. Many jobs require employees to sign on to group insurance plans. Group premiums can go way up if one employee is HIV-positive, “Especially if there are very few employees,” explains COCQ-sida spokesman René Légaré. “There can be witch hunts to find out who’s responsible. Some employees get denounced publicly during meetings, with their colleagues demanding they be fired.”

A COCQ-sida poll found that 51.5% of those living with HIV in the workplace found themselves rejected by colleagues. This, despite the fact that with proper treatment and follow-up, an HIV-positive can live unnoticed and without assistance, explains Lacasse.

It’s time to dispose of the myth that HIV-positive people can’t thrive in just about any career, even food preparation, asserts COCQ-sida.

End the Solitude

For some, a positive diagnosis does nothing to disturb their normal lifestyle; for others, it translates into complete solitude. Benoît has worked in the milieu since 2004, volunteering at Maison Plein Coeur, and participating in the Théâtre à  2 program to break down the walls that isolate HIV carriers from society.

In his efforts to build awareness, Benoît has become a bit of a public figure himself. He openly advertises his status. He readily answers questions from journalists and the general public on a daily basis. Like the time he was asked what should be done with one of his T-shirts in the wash that had blood on it. Wash it normally, he said, there’s no risk of transmission.

If Benoît isn’t a hermit it’s largely because of his parents, who have fully supported him since the diagnosis. He is especially close to his mom. He’s had romantic relationships, and he’s involved himself with the community. His next step: hopefully, a return to the working world.

What is HIV?

HIV stands for the Human Immunodeficiency Virus. Those infected with the virus will find their immune systems slowly destroyed, if left untreated. The HIV virus is recognized to cause AIDS, which stands for Acquired Human Immunodeficiency Syndrome.  Sufferers easily contract infections and illnesses, their immune systems weakened. But a carrier of HIV can live for many years without developing AIDS. Basketball hall-of-famer and entrepreneurial superstar Magic Johnson is but one high-profile example of an HIV-positive person who has done very well for himself since he was diagnosed in 1991.

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