At age 30, Nicole could be a poster woman for good looks and good health — except for one issue she feels compelled to keep secret.
While her family and close friends know, she is very careful about telling others that, at age 21, she was diagnosed with HIV.
The fair-haired, fit-looking woman is a divorced mother with two healthy children, holds a good job and owns her home. She is a heterosexual woman who had none of traditional risk factors for HIV, such as intravenous-drug use or promiscuity, when she was diagnosed.
She’d love to let us use her last name to help lambaste the deep stigmas that still exist about HIV, the lack of knowledge about how controllable it is and how hard it would be for women like her to transmit the virus. But as the sole support of her family and with a boss who has no idea of her status, she just can’t risk it.
Nicole is deeply disturbed by the ungrounded belief in easy transmission that is still widespread in society. Even some close friends aren’t keen on her borrowing a hairbrush, or sipping from the same glass.
“Having this stigma is so anguishing,” she said. “It takes some of the quality from my life.”
Devastating diagnosis
She has no idea whether the man who passed HIV to her had any idea he was infected. She found out as a result of routine blood work about 10 years ago. She was so devastated her family doctor had to drive her home. She was sick at the thought she might never be able to have kids or, worse, faced imminent death.
Nicole managed to get on with her life. She met her husband, who was also HIV positive, online. Neither of their children has HIV.
Now divorced, Nicole’s deepest wish is to find a partner, a father figure for her children and a husband unafraid to love her. She has experienced devastating setbacks on that score. She dated two men and, in each case, when the time seemed right, she worked up the courage to them about her status. She explained that experts in the field have assured her that there is almost no chance she can transmit HIV to others. But, within 24 hours, each man dropped contact with her.
That made her feel “discardable,” she said.
“My body has not been affected by [HIV], nor is it expected to. It’s actually expected to be unaffected for the rest of my life. But my spirit and my heart have been.”
That’s why, she said, she wants to fight stigma around HIV.
New treatment, new hope
The B.C. Centre for Excellence in HIV/AIDS also wants to get out the word that taking HAART — a landmark mixture of highly active anti-retroviral therapy — reduces the level of HIV in the blood and sexual fluids to undetectable levels, dramatically decreasing the likelihood of HIV transmission, said Kevin Hollett, the centre’s communications co-ordinator.
HIV transmission by heterosexual contact accounted for about 22 per cent of the 238 new HIV cases in B.C. in 2012 — or about 52 new cases, down from 75 in 2011.
That’s far less than the 63 per cent transmitted by men having unprotected sex with men, but nearly double the 12 per cent transmission rate via intravenous-drug use, according to figures from the B.C. Centre for Disease Control.
There’s no reason for Nicole not to have a healthy sexual relationship without fear of transmitting HIV, said Dr. Julio Montaner, one of the world’s pre-eminent HIV/AIDS experts.
Montaner, a professor of medicine at the University of B.C., said that thanks to HAART — a therapy that he helped develop — Nicole’s viral load is undetectable and, as such, it is not possible for her to transmit HIV to others.
The virus that was often death sentence when Nicole was a child is now a chronic illness that can be well managed in many people.
“Twenty years ago, a woman infected with HIV at age 20 would be told, ‘Sorry, you have a disease that is going to kill you prematurely, you’re going to have a very rocky course ahead, you are basically not going to have a normal reproductive life,’ ” Montaner said.
“Today, a 20-year-old woman who comes to my office for the first time and has an HIV diagnosis, yes, it’s a problem, but we have a strategy. The treatments are highly effective, they are simple, they are formulated into one pill once a day, most of the time.”
A 20-year-old woman diagnosed today with HIV and given anti-retroviral drugs can expect to live in good health until the age of 73, Montaner said. He’s hesitant to call it a normal life-span “because anything that requires treatment, by definition, is not normal. But I usually [say] near-normal longevity and a very high quality of life.”
Twenty years ago, Montaner would have had to advise Nicole not to have children. Now he can say, “You will be there to nurture your children and you will be there to see your grandchildren.”
Moreover, B.C. Women’s Hospital researchers have developed a drug regimen that has prevented births of any HIV-positive babies in B.C. in the last 15 years to HIV-positive mothers who underwent a full anti-retroviral regime.
The toll of stigma
Even though Nicole has a nice life by anyone’s standards — something that can’t be said of impoverished injection-drug users, for instance — the HIV stigma must take a toll on her well-being, said Katrina Jensen, executive director of AIDS Vancouver Island.
“You can’t underestimate the impact that stigma and discrimination have on someone’s health … no matter how privileged they may seem. If they’re part of a group that experiences a lot of stigma, that is bad for their health,” Jensen said.
As a woman in her childbearing years, Nicole only recently began to take medication — four pills a day. She continues to have routine blood work done to monitor her T-cell counts and viral load.
“Now that I’m on medication, it is likely I will have undetectable viral load for the rest of my life,” she said.
As her children grow up, Nicole doesn’t want them to feel there’s something wrong or shameful about their family. They’re too young to understand the implications of HIV. She regrets she can’t use her surname to defy the stigma and help normalize HIV. She’s got a mortgage to pay, kids to support, a job to do and a public image she doesn’t want to tarnish by untruths. She’s not willing to be “a sacrificial lamb,” but she wants people to remember her story when they hear about someone living with HIV.
A look at the numbers
• Number of people in Canada living with HIV, including those with AIDS, in 2011: 71,300
• Number of people in Canada living with HIV, including those with AIDS, in 2008: 64,000
• Number of people in B.C. living with HIV in 2011: 11,700
• Number of people in B.C. with AIDS in 2011: 70
• Number of people on Vancouver Island living with HIV in 2012: 888
• Number of new HIV infections in Canada in 2011: 3,175
• Number of new HIV infections in B.C. in 2012: 238
• Number of new HIV diagnoses on Vancouver Island, from 2008 to 2012: 159
• Rate of new HIV infections in Canada in 2011: 7.6 per 100,000 people
• Rate of new HIV infections in B.C. in 2012: 5.2 per 100,000
• Rate of new HIV infections on Vancouver Island, from 2008 to 2012: 4.2 per 100,000
• Rate of new HIV infections on Vancouver Island in 2012: 3.4 per 100,000
• Percentage of cases in B.C. in 2012 in which HIV transmission caused by:
- gay, bisexual contact: 63
- heterosexual contact: 22
- intravenous-drug use: 12
• Annual cost of HAART anti-retroviral treatment: $15,600
• Lifetime cost of HAART anti-retroviral treatment: $500,000
• Number of HIV blood screens done on pregnant women in B.C. in 2011: 46,910
• Number of HIV-positive babies born in last 15 years to mothers who underwent full anti-HIV drug therapy: 0
• Annual deaths due to AIDS in B.C. in 2011: 59
• Annual deaths due to AIDS in B.C. in 1996: 253
• Annual deaths due to AIDS in Canada in 2009: 355
• Annual deaths due to AIDS in Canada in 1995: 1,764
Sources: B.C. Centre for Excellence in HIV/AIDS, Statistics Canada, Vancouver Island Health Authority and B.C. Centre for Disease Control, B.C. Women’s Hospital & Health Centre Foundation
