They've been inseparable ever since friends set them up at a Maple Leafs game four months ago. They see each other every day, usually to watch movies or hang out at the mall.
For the first few weeks, the pretty teen with deep blue eyes kept something from her boyfriend. But when they started talking about losing their virginity, she knew she had to tell him.
“It was a big secret and I didn't want to keep it any longer,” said the 17-year-old, who asked to be called Anna.
I have HIV, she wrote in a page-long letter.
Johanne and William Decarie with their daughter BillieJo at their Rockland, Ont., home in 1993. Billie Jo's mother was infected with the human immunodeficiency virus during a blood transfusion in August of 1985. Later, unaware of her condition, she infected her husband. And, despite using condoms, the Rockland couple conceived a child who inherited the cruel legacy of a blood system that failed them. (John Kenney/CP)
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Anna and hundreds of other Canadian teenagers are pioneers: They are the first people to grow up HIV positive.
When they were little, doctors and nurses spent much of their time helping infected children die comfortably. No one ever expected a child with HIV would become a teenager.
That changed almost a decade ago when a three-drug cocktail was approved for children, transforming the virus from a virtual death sentence into a chronic, manageable condition. Suddenly, parents and health professionals had to address a host of unforeseen issues, from telling youngsters they are HIV positive to tackling the thorny issue of sex.
No one knows exactly how many Canadian teenagers are living with HIV. Some have not yet been tested, and public health officials do not break down statistics for 13- to 19-year-olds. However, 1,545 individuals age 19 and under were diagnosed with the virus between 1985 and 2005. Data are not kept on how they contracted it, and no one knows how many are still alive.
Every month or so, 34 HIV-positive teens from Southern Ontario — along with 50 younger kids — come to a waiting room at the Hospital for Sick Children in downtown Toronto. All but a handful of these patients contracted the disease from their mothers. Of the teens alone, three are AIDS orphans and another nine have lost one parent. For many patients, the staff at this clinic, which ran one of the country's first pediatric HIV-AIDS programs, are like family.
One day this week, a woman swayed back and forth to soothe her baby girl. A preschooler with pigtails and a pink polo shirt rode a truck beside a table laid with juice and snacks. A boy in a blue Gap shirt played Nintendo after having his blood pressure taken. Friendly nurses dodged strollers, a social worker made her rounds and program director Stanley Read greeted patients with a smile.
There are no AIDS posters on the walls here, no pamphlets about living with HIV. No one walking by could tell these people have the disease.
In addition to protecting the families' privacy, the non-descript waiting room helps prevent the younger children from knowing exactly why they're here. For as long as they can remember, most have swallowed medication every day and been poked and prodded every month. Many have no idea why. Their caregivers and parents, many of whom are racked with guilt, think it's better that way.
“They often want to protect the child and they'd rather not tell them for as long as possible,” Dr. Read said.
But before the youngsters hit puberty, the Sick Kids staff urges disclosure. Telling a pre-teen he or she has HIV often elicits a shrug, while telling a teenager is much more emotionally charged. And children aged 10 to 12 are old enough to understand, Dr. Read says. Once they're told, they're instructed to keep their HIV status to themselves. Those who want to share it with someone are urged to first talk to the clinic team, who have heard horror stories of “friends” shunning patients and telling the whole school.
However, some HIV-positive kids resent not knowing their status earlier. A lanky 17-year-old with bushy sideburns remembers being told he had the virus when he was a pre-teen. Born in Europe, he got the disease as a toddler, probably the same way Anna did, through tainted blood or medical equipment.
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