Jill, who lives in Toronto, went into her doctor's office three years ago for a pregnancy test. While she was there, he suggested that she get tested for HIV.
A few days later, she got a call from the secretary at her doctor's office. Yes, Jill was pregnant. She was also HIV-positive. "I was shocked, I was confused, I was afraid," says Jill (not her real name), who had a partner and two other children. "I even thought about having an abortion - I didn't know what else to do."
Untreated, Jill had a 25 per cent chance of passing HIV to her baby - whether in the womb, during delivery (the most common form of transmission) or through breastfeeding. In the early 1990s, that was fairly common. With no regular testing of pregnant women and no HIV treatments, 10 to 12 HIV-positive babies were born in Ontario every year, most of them in the Greater Toronto Area.
Then along came the HIV drug azidothymidine - better known as AZT. During a clinical trial in 1994, researchers discovered that when given to mothers-to-be early in their pregnancy and during delivery, and then to the baby in syrup form, AZT cut the rate of transmission to 7 per cent. Nowadays, with even more effective drug cocktails, it's less than 1 per cent.
Indeed, according to Toronto Public Health's most recent annual report, released in April, the number of perinatal transmissions of HIV in 2005 was zero, down from six in 2002. "This really is a good-news story," says Frank McGee, co-ordinator of the provincial AIDS Bureau.
Today, the focus for physicians, midwives and advocates in the GTA is to make sure as many women as possible get screened during pregnancy. "Because there's such an effective treatment, we want to make sure everyone has access to it," Mr. McGee says, and that includes the high concentration of women who often fall through the cracks - newcomers from HIV-endemic countries, sex-trade workers and drug users. "Our goal is to have zero transmissions a year."
"This is a 100 per cent preventable disease in babies," adds Dr. Ari Bitnun, a physician at Toronto's Hospital for Sick Children who specializes in pediatric HIV. "If the moms are identified early in the pregnancy and they get treated early to suppress their viral load, and the babies get treatment, we have not seen any transmissions in those scenarios."
During Jill's second trimester, she started taking antiretroviral pills - four in the morning and four at night. "My system wasn't used to the medications, so I vomited like crazy," says Jill, who kept on working until her eighth month. "I was sick throughout the whole the pregnancy."
When her son was born in March, 2005, he started a six-week course of AZT syrup. Doctors regularly took blood from his tiny arms. Jill couldn't breastfeed, for fear of transmitting the virus through her milk. But the treatment regimen worked - he's HIV-negative.
Things could easily have gone the other way, had Jill not been tested in the first place. Over the past eight years, since Ontario instituted regular screening for pregnant women, 211 have tested positive for HIV.
"If you're pregnant, you're at risk of having HIV because you've had unprotected sex," Dr. Bitnun says. "There's a misconception that if you're married and he's your only partner, you can't have HIV. We know it's not quite as simple as that."
Yet in the early days of the epidemic, doctors and midwives generally only tested "high-risk" patients - sex-trade workers, intravenous drug users and immigrants from HIV-endemic countries in sub-Saharan Africa and the Caribbean.
Shari (who doesn't want her surname published) didn't fit the profile. She had a house in the suburbs of Toronto, a successful career in sales, sat on several boards and volunteered in her community. Before getting pregnant in 1992, she had twice asked for an HIV test - once after having surgery outside the country and once after learning her partner had been unfaithful. Both times, her doctor talked her out of it. With no treatment available, the doctor said, "Would you really want to know?"
Eight months into her pregnancy, Shari decided to switch insurance companies. A nurse came to her house to take urine and blood samples for a whole host of ailments, including HIV. "I never really thought about it again," she says.
Three months after her child was born, she received a letter from the insurance company - they had rejected her application and suggested she contact her doctor. "I freaked," she says. When she finally got through to her doctor's office, she asked the nurse to check her HIV results. "She just started sobbing," Shari says. "It felt like a death sentence. And my first thought was, 'I have a three-month-old.' "
Six weeks later, her child tested positive too.
Shari soon began working on HIV issues full-time, and she was one of the activists who lobbied the Ontario government to introduce an HIV-testing program for pregnant women. In 1999, it did. Doctors and midwives were encouraged to offer their patients an HIV test, but it wasn't mandatory, and a woman would get counselling before and after taking it, regardless of her status.
Ontario's "opt-in" system was, and still is, controversial. In other provinces, including Alberta and Newfoundland, HIV is one of the routine blood tests conducted during pregnancy, along with rubella, hepatitis B and syphilis. In those provinces, prenatal HIV screening is extremely high, because the onus is on the woman to say she does not want to be tested.
In a recent report, the World Health Organization recommended that countries institute this kind of "opt-out" system to help prevent perinatal transmission - a recommendation that has not been well received in the HIV community. For HIV advocates, this is a human-rights issue - some women just aren't ready to know their status or to be exposed, for fear they will be ostracized by their partner, family or community. "There's always a stigma attached to HIV, and that stigma plays out in different ways," Mr. McGee says.
"For African and Caribbean women, it relates to their immigration status - can they stay?" he says. "For some people, HIV status can become a racist thing. For women who are using intravenous drugs, it's an illegal activity, and that may be something they don't want to talk to their provider about."
As proof that an opt-in system can be almost as effective - while respecting women's rights - experts point to Ontario. At the start of 1999, the uptake was just 33 per cent, says Dr. Robert Remis, who leads the Ontario HIV Epidemiologic Monitoring Unit. Today, it's around 92 per cent. Yes, some women do slip through the system. That's why Dr. Remis says the actual number of perinatal transmissions in Toronto was probably closer to three in 2005, rather than Toronto Public Health's report of zero.
"But the big picture is what's important. And the fact is, over all since the testing project came into effect, we've reduced transmission by half," he says. "Perinatal transmission has not been totally gotten rid of. It's not perfect. We're always striving to improve."
Support groups
Motherisk: Part of the Hospital for Sick Children, Motherisk offers a helpline and resources for HIV-positive women. 1-888-246-5840; http://www.motherisk.org
Sages-Femmes Rouge Valley Midwives: Jay MacGillivray is the only midwife in Ontario who specializes in treating women who are HIV-positive, working in concert with Dr. Mark Yudin at St. Michael's Hospital. 905-409-6447;
http://www.srvm.pvfnetworking.com
Teresa Group: Pre- and post-natal support groups for HIV-positive women. They also give free formula to HIV-positive mothers for up to a year, anywhere in Ontario. 416-596-7703;
Voices of Positive Women: Support groups and resources for women who are HIV-positive. 416-324-8703; http://www.vopw.org
Dawn Calleja