04/19/2013 06:27 EDT | Updated 06/19/2013 05:12 EDT

HIV positive women call for gender-focused care to curb death and transmission

VANCOUVER - Battling HIV-AIDS is a full time job for a British Columbia woman who's had the disease for more than 25 years and struggles to find care in a province with "seriously inadequate" health-care resources for women living with the illness.

The lack of woman-centred, holistic and culturally-competent treatment is a "national disgrace" for Margarite Sanchez, 56, who was diagnosed with HIV-AIDS in 1993.

Her diagnosis came as a complete shock because she was not among so-called "high risk" populations of drug users or sex trade workers and her doctor didn't think she needed HIV screening, Sanchez said.

"I was even encouraged not to get tested," Sanchez said, adding it's a statement she still hears from concerned women who ask their family physicians to test for HIV.

But the petite, curly-haired woman persisted because she was rapidly losing weight, had flu-like symptoms, diarrhea and a re-occuring fungal infection called candida.

"I was just getting so sick. I couldn't figure out what was going on," she said.

Sanchez described the moment when her test results came back positive and said both she and her doctor were floored by the verdict.

"It was like completely having the carpet pulled out from under you," she said.

While Sanchez wouldn't say how she contracted the virus, she said by the time her results came from the lab she was living with "full-blown AIDS."

The then 36-year-old mother of two young kids faced a scary prognosis at a time when there were few effective antiretroviral drug treatments to mitigate the devastating symptoms.

"I experienced what a woman would experience in a resource-challenged country where no medications are available to her," Sanchez said.

"I've been through the wringer," she added.

Sanchez went through three specialists during the first year after diagnosis, dealing with medical professionals who lost her paperwork and kept her husband and kids out of the loop.

It was a mission for the Salt Spring Island woman to get care — five-hour ferry rides and strict adherence to a multitude of pills.

All at a time when her CD4 count, which indicates the number of white blood cells helping to fight infection, was close to zero. "Normal" CD4 counts are between 4,500 and 1,200.

Next week, the United Nations group UNAIDS will hold a workshop in Vancouver. The meeting comes following the recent release of studies from the B.C. Centre for Excellence in HIV-AIDS that found women with the disease are 25 per cent more likely than men to receive sub-standard treatment in B.C., which researchers said puts women at higher risk of death or transmitting the virus to others.

The numbers were particularly high for those who earned less than $15,000 annually or used illicit drugs, the studies found.

The results didn't surprise doctors at the province's only "one-stop-shop" for woman-centred HIV-AIDS care.

Dr. Neora Pick and Dr. Mary Kestler have long been calling for improvements to the current medical system when it comes to treating women.

"HIV is not a death sentence anymore," Pick said, but added there are significant barriers to providing treatment for a gender that's often more concerned with caring for others than themselves.

"A lot of these women had a lot of trauma, and violence, and abuse, and rape," Pick said, adding there are also sometimes language, socioeconomic or geographical barriers that prevent women from getting help.

Pick said there are about 3,000 women living with HIV-AIDS in the province — the Oak Tree Clinic currently treats about 600 active cases, including kids who were exposed to the virus at birth but don't have it themselves.

There's little the clinic doesn't do. Staffed by less than 20, the centre has social workers, counsellors, nurses, in-house blood tests and a pharmacy. They also offer childcare and food.

The clinic has launched a number of outreach initiatives to try to reach and engage women — especially those who are marginalized or within the provincial corrections system.

Another program they've recently launched is a cellphone pilot that sends weekly text messages to check-in with patients and show someone cares about their health status.

The clinic is often pushed to its limits, Kestler said, because women who've had bad experiences with family doctors come to them with health concerns that aren't necessarily specific to the disease.

Kestler said there can be a lack of understanding among general practitioners who refuse to take on patients with HIV-AIDS.

"Many of our women have had outrageous experiences with doctors saying things to them like, 'Well, we don't need to treat this because you're going to die in five years anyway,' Kestler said. "And putting on gloves just to touch the patient even though you don't need to do that."

"You can imagine that you're a woman and you go into a doctor's office and hear something like that? That's the last time you're ever going to go," she added.

With little information about the disease when she was first diagnosed, Sanchez said it was an extreme relief to find holistic care at the Oak Tree Clinic.

"I was so grateful when I found that place," Sanchez said, adding that treatment is often a time-consuming and draining process for those who live outside Canada's urban centres.

"It was, and still is, full-time work being HIV positive," Sanchez said.

While she kept her status a secret to protect her kids when they were growing up, as soon as they graduated high school Sanchez decided to break her silence.

"I told them, Momma's coming out of the closet," Sanchez said laughing. Since 2006, she's has been an outspoken activist for those living with the illness who are often stigmatized.

"I've been really lucky. I've had very (few) negative repercussions from living openly positive. I do know women in our community who have had a very hard time," she said.

"I know women in Saskatchewan who have experienced extreme violence ... the stigma in the larger community is still really nasty," Sanchez added.

Now an artist, gardener and activist, Sanchez runs two HIV-AIDS peer-support groups in the Lower Mainland and an online forum called VIVA where so-called "positive women" can connect from the comfort of their own homes.

"Every day above ground's a good day," Sanchez said. "I'm really grateful to be alive and am just trying to make the most of it."