Medicine treats illness, but not stigma
Many living with disease feel they must keep their condition to themselves
Within a span of four years, Rhonda went from nearly dying from AIDS to giving birth to a healthy baby girl.
Her story illustrates the challenges of AIDS in 2014. Science has made incredible advances in treatment and prevention but the social stigma associated with the disease remains almost as strong as always.
Rhonda collapsed in 2010. She was taken to hospital in a wheelchair, but fell into a coma within hours. When she awoke three weeks later, she was told she had AIDS.
She’d had no idea she was HIV positive.
“I cried for months,” she said. “I was in a fetal position, didn’t talk to anyone, didn’t tell my family.”
“I thought: ‘I have AIDS. I want to die. I’m sick. I’m dirty. I’m gross. I don’t want anybody touching me.’ That’s how I felt for a long time.”
She was told she might have been HIV-positive for as long as a decade. Given her background, she can only imagine she was infected by a sexual partner.
HIV stands for human immunodeficiency virus, which weakens a person’s immune system and makes the person susceptible to other infections. Once HIV has weakened the immune system and the person has a life-threatening illness or illnesses, that person has developed AIDS.
Rhonda wanted to talk about the great care she received at the Oak Tree Clinic at BC Women’s Hospital but didn’t want to use her real name or have a photograph taken because of the stigma still associated with HIV.
Rhonda said it took two years to deal
with the shock of discovering she had AIDS and to get healthy before she could tell her mother and close family members.
Even then, the stigma associated with AIDS was so intense for her that she became physically ill every time she talked about it.
One place she found that was stigma-free was the Oak Tree Clinic. There, Rhonda said, she was hugged and treated like a family member.
They helped her regain the will to live and to start a family.
As well as the stigma, Rhonda said she didn’t want to go public because she didn’t want to place a burden on her child. In five years, when her daughter is in school, she doesn’t want her to face the possibility of being bullied or singled out because of the disease her mother has.
“I don’t think all day long, ‘I’m going to die.’ Oak Tree was what I needed to get back into a healthy state,” Rhonda said in an interview at Oak Tree.
“They help you stay on your meds. The importance is monumental. They’re uplifting. They’re beyond caring. Not for a second do you feel like you’re talking to a doctor or nurse. You can catch your breath. No one here is judging me.”
There were 272 new cases of HIV in B.C. in 2013, an increase from 237 in 2012, according to the BC Centre for Disease Control. Despite last year’s rise, the recent trend is for fewer people to test positive for HIV: in 2011 there were 288 new cases, in 2010 300, in 2009 337, and in 2008 347.
Since it was started 20 years ago, the Oak Tree Clinic has treated more than 5,500 HIV-positive women. Since 1994, the rate of transmission during pregnancy from mother to fetus has dropped from between 25 and 35
per cent to less than one per cent, said Dr. Deborah Money, vice-president of research at BC Women’s Hospital.
This year also marks the 20th year since researchers such as Money discovered that HIV medications can prevent transmission during pregnancy.
“It’s difficult to get the messaging right that there have been huge successes but the problem has not gone away,” she said.
“We still have new infections every year in B.C. and Canada. We have 35 million people around the world with this disease — over half are women.”
Money said the success of Oak Tree comes from having a multidisciplinary team in one location where women and families can meet with a team that includes HIV physicians, pediatricians, obstetricians, pharmacists, dietitians, social workers and psychiatrists.
“I think the history would say that it’s proven to be a very effective model,” Money said in an interview.
“The women will tell you it makes a huge difference for them. We try to bring as much as we can to one location and make it friendly, make the waiting room a place where you can have children playing.”
In an interview, Money said the stigma around HIV and AIDS remains very real.
She said Rhonda’s story of having to hide her identity is virtually identical for every woman who comes into Oak Tree Clinic.
“They can’t tell their neighbour, family, friends,” she said. “It’s not like telling a person you have breast cancer and everyone rallies around you. They can’t reveal this disease because everyone is still frightened. It’s quite dreadful. That’s the part I find the hardest.”