There are people in Vancouver with HIV/AIDS who are dying without ever having access to health care. So says Paul Lewand.
"About 50 percent of our members live in poverty."
The tall, lean, and ponytailed chair of the 4,000-member British Columbia Persons With AIDS Society is sitting in the nonprofit organization's bustling Seymour Street offices. Now in his 40s, he was diagnosed with HIV 12 years ago. He is on antiretroviral therapy, which was introduced at the 1996 International AIDS Conference in Vancouver. He takes other medications as well, frequently switching from this drug to that drug as, one by one, they are trumped by a constantly mutating virus that can turn your body into an open wound vulnerable to every human infection on the planet-including prejudice and poverty.
Everyone talks about how poverty fuels AIDS in developing countries, but no one talks about poor people here at home, where HIV infection rates are climbing in every community category except one. We cast our eyes fretfully to Asia, where throughout 2003, 2004, and 2005, 67 people succumbed to the so-called avian flu, while AIDS killed 3.1 million people worldwide in 2004 alone, including 23,000 in North America and Europe. Meanwhile, in 2004 there were five million new HIV infections globally, with the steepest rise in Asia, a region that is expected to see another 12 million people infected with HIV by 2010, the year Vancouver hosts the Winter Olympics.
In Canada, we like to think that HIV/AIDS is no longer a death sentence. However, it is a life sentence, one locking you into an unforgiving schedule of medications that work only when basic needs such as healthy food and reasonable shelter are met.
"When you're thinking about where you're going to sleep and how you're going to eat tonight, it doesn't give you much time to think about where to get medication, let alone maintain a regimen," Lewand says. "And you can't take your meds unless you have a decent diet, because your stomach just won't handle it."
The financial realities for B.C.'s PWAs living in poverty are sobering. If they are well enough to work, they can earn a maximum of $400 a month on top of their B.C. disability. This amounts to $12,000 a year to live on. Try getting by on that in Vancouver, especially when you're sick. (After taxes, working for a year at B.C.'s minimum wage of $8 comes to roughly the same.)
"I house-clean part-time to make ends meet," says Lewand, who is adamant that affordable housing is the number one priority for PWAs.
The B.C. government pays for HIV meds, at least for now, but people living-or, rather, existing-with HIV/AIDS on limited financial resources are often stuck in cramped, frequently unsanitary single rooms, which severely compromises their health. Subsidized- housing programs are swamped. The nonprofit AIDS service organizations (ASO) Wings Housing Society and McLaren House are unable to accommodate more than a thousand people on their waiting lists. It can take as long as six years to get a subsidy, if you're still around to get one.
Roommates are an iffy option. Many people have a hard time maintaining the necessary personal and environmental hygiene, but what's particularly disturbing is that in 2005, in supposedly enlightened Vancouver, there are still lots of people who don't want to live with you when you're HIV-positive, and there are many who won't rent to you. A 2004 survey by Ekos Research for the Public Health Agency of Canada says that one in 10 Canadians and one in four Americans believe that people with AIDS deserve it. Today, gay men share the burden of this prejudice with women.
"It's always a challenge when the media ask to speak to a woman willing to disclose her name and come forward about her HIV status. Women face a lot of stigma," Lewand says.
Efforts by the nonprofit Positive Women's Network to find someone willing to go on record for this story proved futile, even though HIV infection rates among women are climbing. In 2004, women accounted for 25 percent of all reported HIV infections in B.C. and Canada, and almost half worldwide. Their silence is understandable. Human history has shown little compassion for or interest in women in crisis, especially poor women. How many of us can name just one of the dozens of women who have disappeared from Vancouver's Downtown Eastside?
This is díƒÆ’í‚ ©jíƒÆ’í‚ vu for gay men who were there when the shit hit the fan in the 1980s, a generation for whom a positive HIV test once meant probable death-who marched in the street, picketed conferences, and chained themselves to doorways to get government attention, helplessly watching while their friends and lovers died horribly.
Perplexingly, since 2000, the HIV-infection rate among men who have sex with men (MSM) in B.C. has grown by almost 50 percent, according to the B.C. Centre for Disease Control. (A cautionary note concerning HIV statistics: they represent only the people who get tested because they or their doctor think they may be at risk.) One hundred and seventy-six of 454 British Columbians testing HIV-positive in 2004 were MSM, including those who don't self-identify as gay and also have sex with women. This coincides with a 2004 survey of 2,690 gay and bisexual men conducted by Vancouver's Centre for Community-Based Research, which reports that one in four had unprotected anal sex with one or more partners in the previous year, mostly in secret in secluded public spaces and bathhouses after meeting via the Internet and chat lines. This is a concern when one of the men is HIV-positive or if both men are positive and one of them carries a drug-resistant strain of the virus.
Of the 454 British Columbians who tested positive in 2004, 114 of them were women. The big news from the Centre for Disease Control is that for the first time, heterosexual contact, not intravenous drug use, was the main conduit for infection. In 2004, 115 British Columbians who tested HIV-positive were infected through IV-drug use, down from 350 in 1996, when the statistic peaked and Vancouver's Downtown Eastside was tagged as the most HIV-infected urban neighbourhood in the developed world.
With HIV-transmission rates going up among everyone except IV-drug users, you have to wonder what's going on. All too often, HIV/AIDS-prevention strategies focus on the specific needs of specific communities but overlook the behaviours linking these communities, behaviours that usually take place beneath the radar.
"We're just scratching the surface," says Soni Thindal, a community educator with the nonprofit Asian Society for the Intervention of AIDS (ASIA), in the society's West Pender Street office.
Thindal, Rosy Deol, and Elina Chui are three refreshingly blunt young women doing community outreach to educate other Asian Canadian women about HIV prevention. Although Asian Canadians represent a small fraction of new HIV infections in B.C., the numbers are starting to rise. As part of their overall campaign, Thindal, Chui, and Deol visit workers in about 40 Vancouver massage parlours where men can purchase sex with women, many of whom are immigrants.
"A woman who owns a parlour we do outreach in says that she thinks there are between four and five hundred parlours in the Lower Mainland," says Deol, who does not dispute the figure. This does not include what Deol calls "micro-brothels"- countless private residences across the GVRD where (mainly male) bosses sell sex with women.
"Economics play a big part," Deol says. "Maybe the women have children. Maybe their partner left them. And, let's face it, people that come to Canada are often de-skilled."
Chui, a former sex-trade worker, says that based on her experience, condom use among sex-trade workers is common. However, many men will pay more for sex without a condom. "The girls do it [don't use a condom] or they are not going to get money. A lot of them think they're strong and it's [HIV/AIDS] not easy to get. I want them to understand that it's not true."
"A women doing sex work may be protecting herself with her clients but not with her partner," Deol adds. "That's a big thing with [Asian] women in general. They're not comfortable talking about this sort of thing with their partners. And their partners [the men] may be doing something outside the relationship that is putting them [the women] at risk."
"Asian women aren't supposed to be sexual," Thindal says dryly. "It's a problem that I grew up with in East Van. I can't go to the Superstore by my house and buy a condom because someone will see me. Even the men are uncomfortable buying condoms."
When Thindal isn't talking to sex-trade workers, she's in high schools on behalf of the nonprofit YouthCo AIDS Society, talking to kids from her community-and the community at large-who have many misconceptions about HIV/AIDS.
"In order to get to the point that you can talk about [sexually transmitted] diseases, you have to get to the point that you can talk about sex," Deol says. "We have a lot of work to do."
Sitting down over a cup of hot chocolate at a Davie Street coffee shop, Sharyle Lyndon is anything but shy about talking sex. It took three days and four ASOs to track down an HIV-positive woman willing to use her real name.
She's gay, but don't call her a lesbian.
"That's too separatist. I haven't got enough flannel to go to Commercial Drive. I'm a dyke; a fat, old dyke," the 55-year-old Lyndon says.
Lyndon is a board member of the nonprofit A Loving Spoonful, which every day delivers nutritious meals to more than 300 people living with HIV/AIDS. Her dyed-blond, spiked hair peeks out from underneath a sporty cap. She's well dressed and immaculately made-up. The studded S&M collar around her neck is a nice touch.
Lyndon's flair for drama has been an asset throughout three decades as an influential gay-rights and AIDS activist. She grew up in a religious family in affluent Shaughnessy and went to a private girls' school, York House, which prepared her for a varied career: as a madam in the sex trade, a businesswoman, and a radio talk-show host, mainly in Hawaii, where she moved in her early 20s. In 1987, she produced that state's first Gay Pride parade and helped pave the way for same-sex marriage there. A self-professed political animal, she originally moved to the States to escape what she calls the political apathy in Vancouver, apathy she thinks continues to hinder more and better HIV/AIDS services.
"I know that it's not the politically correct thing to say, but this is a big city with a small-town attitude," she says.
Lyndon was diagnosed in 1982 and lives with full-blown AIDS. She has never slept with a man or used a needle. When she's well enough, she is an advocate on behalf of other women living with HIV/AIDS, who feel powerless. She's pretty clear about where she thinks the powerlessness comes from.
"On record, as with most medical issues, statistics are written by men for men," Lyndon says. "How come you can go into any [gay male] bar and pick up a free [male] condom, but I have to pay $19.95 for three female condoms?"
Like the women at ASIA, Lyndon thinks that we need to talk frankly about the real issues affecting people living with HIV/AIDS, not to mention the people who will become infected if the discussions don't take place. She also thinks that we need to reach a whole lot deeper into our pockets.
"If someone wants to help, write a cheque and put "direct services" on it. Then donate it. Let the government take care of administration costs, and let all donations focus on needs."
This echoes Lewand back at BC PWAS.
"The current provincial government is trying to mainstream things," he says. "They don't like special programs. They want everything to run the same way. Our [HIV/AIDS] drug program is in real danger."
If more money and support aren't forthcoming, then one day soon someone is bound to call up the people who put together those lists that consistently rate our city as the best place in the world to live and tell them what's really going on here. It's something that the people marketing our Olympics won't say: that every day in Vancouver is World AIDS Day.