AIDS Falls off Public Radar

The Tyee.ca

December 1 marked more than the start of the annual Christmas shopping frenzy; it was also World AIDS day. You’d be forgiven for not knowing that, given the lack of media coverage. Morning papers that day were plastered with stories about U.S. President Bush’s visit to Ottawa, and the death of Canadian icon Pierre Berton. Any mention of the virus ravaging the developing world and still claiming lives here in B.C. ran below the front page fold if at all.

None of this really surprised any of the major local HIV/AIDS groups. After all, Vancouver’s most recent annual AIDS Walk on September 27, 2004, saw registration fall by 25 percent, despite the weather being sunny and warm. Liberal Vancouver-Burrard MLA Lorne Mayencourt, who spoke at the event, found himself pleading with a few hundred onlookers to use their cell phones and ask friends to come down and participate. Not surprisingly, the funds raised by the walk fell $85,000 short of its $425,000 goal. All of this begs the question: where has all the love gone?

Mayencourt has his theories and he recently shared them with me over coffee on Denman Street in Vancouver. As the founder of the Friends for Life Society, which was created in 1993 to provide care for people living with HIV/AIDS and now also cares for those living with other life-threatening illnesses, he was discouraged by what he saw happening to the HIV/AIDS movement.

“I think there’s a fair bit of apathy that’s become attached to HIV/AIDS,” he told me. “Some of that has to do with the fact that, as a community, we’ve gone through so much of it that you kind of get bored with it – you start to numb yourself out of being aware of it.”

Recalling the AIDS Walk turnout, he was glum. “It was a pitifully small crowd,” he admitted. “Personally, I felt disappointed that the community didn’t come out, and most particularly that the gay community didn’t come out…I felt disappointment and shame. I think that we have lost more people to HIV/AIDS in this city than attended the last AIDS Walk. That’s a crime.”

Vast global toll

Mayencourt, like many others I spoke to, voiced concern that the lack of local support for HIV/AIDS-related causes has translated into a lack of support globally, as well. According to the latest statistics from UNAIDS/WHO, the total number of AIDS deaths worldwide between 1981 and the end of 2003 was 20 million, and the number of children orphaned by AIDS living in Sub-Saharan Africa at the end of 2003 was 12 million.

Today, women account for 47 percent of all people living with HIV worldwide, and for 57 percent in sub-Saharan Africa. There are 7.1 million children and adults in South and Southeast Asia living with HIV/AIDS, compared to 1 million in North America.

And yet, “globally the cause has withered,” observed Mayencourt. “I think one of the big issues in Africa right now is the orphans. In developing countries, they’re so dependent on generations. Now the grandmother, the grandfather, the uncle, the aunt, are dead. You think of a whole generation of kids in South-East Asia that don’t have that, or in Africa – what’s the price that we, as a society, are going to pay for not having that mentorship?”

Much of this apathy might have to do with the perception that the disease is under control, he speculated.

Infections up in some groups

“Perhaps there’s some perception that it’s curable, or that it’s manageable,” said Mayencourt. “Yet, the friends that I know that are long-term survivors – I’m talking 18, 20 years – have a pretty tough life. They lose their body fat, they have skin cancers, they get weird intestinal disorders. It’s not pretty, and there’s a perception, perhaps in the young gay community, that ‘Oh, this is something they’ll have fixed by the time I get it. I want to party and I want to have fun and I don’t want to be concentrating on all this gloom and doom.’”

According to Sheena Sargeant, executive director of the Youth Community Outreach AIDS Society (YouthCO), Canada’s only youth-driven HIV/AIDS awareness and support organization, this is precisely what is going on. In a telephone conversation a day after World AIDS Day, she cited a 2003 Canadian Youth, Sexual Health and AIDS Study by the Council of Ministers of Education and Health Canada. The study found that 44 percent of all grade nine students, 46 percent of grade 11 males and 53 percent of grade 11 girls believed there was a cure for AIDS.

“There is a perception that AIDS is not a concern,” she noted, “but it’s still not curable, and the drug treatments make people very, very sick. These drugs don’t work for everybody.”

She added: “YouthCO was funded about ten years ago in response to a huge spike in stats of youth getting [HIV] infections. Recently, there have been increases in infections, in particular, in young gay men and Aboriginal women.”

Statistics Canada notes that “the rate of decline of new HIV infections has slowed or perhaps reversed,” and that “despite improved drug and therapy programs, the number of persons living with HIV in Canada is rising, from an estimated 40,000 in 1996 to 56,000 in 2002.” It adds that analysts are concerned that the annual number of new cases has leveled off since 1997.

The B.C. Centre for Disease Control’s 2001 HIV/AIDS Update indicates that the number of AIDS cases for men 20 to 29 declined between 1996 and 1999 from 15 per 100,000 to 4 per 100,000, but increased in 2001 to 5 per 100,000.

Aboriginals hard hit

As for the disease’s effects on the B.C. Aboriginal community, reports from the Public Health Agency of Canada point out that before 1992, 1.3 percent of reported AIDS cases with information on ethnicity were Aboriginal; in 2002, Aboriginal peoples accounted for 12.9 percent of the total reported AIDS cases for which ethnicity was known. In addition, females represent 45.1 percent of all positive HIV test reports among Aboriginal peoples in 2002, compared with 19.5 percent of reports among non-Aboriginal peoples.

In fact, women as a whole are seeing an increase in infection rates; the proportion of all reported adult AIDS cases in Canada occurring in women has increased from 6.1 percent before 1994, to 16.5 percent in 2002.

Clearly, our collective apathy concerning the issue does not echo any lack of urgency concerning infection rates. But in the social hierarchy, the groups of people who are experiencing the greatest surge in infections are not the ones who regularly inspire an outpouring of public sympathy, according to Paul Lewand, chair of BC Persons With AIDS Society, Western Canada’s largest AIDS organization and sponsor of the annual AIDS Walk in Vancouver.

Lewand is a soft-spoken man whose achingly thin body is a testament to the fight he has been waging against HIV since 1989. The day we met, BCPWA’s downtown Vancouver headquarters was a hub of activity; members gathered for warm drinks in the lounge and sought support while volunteers and staff raced from task to task.

“The general public has always tended to not pay attention to poor people,” Lewand said. “They don’t care about the welfare and the wellbeing of prostitutes and drug addicts. They’re not the pretty people, they’re not the loud people…It’s just easier to forget. It’s not nice to look at.”

HIV’s changing face

While the society’s membership has more than doubled since 1996, Lewand said the funding it’s received from the Provincial Health Authority has barely increased over that same period, from $951,000 per year to $1,100,000. A spokesman for the provincial government insisted that HIV/AIDS remains a priority, and pointed out that the B.C. strategy to tackle the disease released last year included $120 million for HIV/AIDS programs across the province.

Not only has his society’s membership increased, Lewand said, but the changing face of the disease has made it trickier to address.

“The population [with HIV/AIDS] today is a lot more difficult to reach now than it was a decade ago,” he explained. “I’m not saying that all gay men are the same, but there was one specific group to target. Now, we’re looking at groups that have almost no structure – I’m referring to intravenous drug users. That’s a big increasing population. And, of course, they have a really tough time speaking for themselves, so they can’t really help themselves…Aboriginal women are seeing the highest increase in HIV infections, and its one small group that is fractured between the [Vancouver] eastside with prostitution and addiction problems, and small communities throughout the province.

“Often street workers end up going home when they get sick, and they end up bringing their disease and addiction back with them. It can spread through a small community very quickly.”

Too much militancy?

Lewand speculated that competition with other charities is also driving away public support for HIV/AIDS-related causes.

“The AIDS Walk was a first. It was almost unique when we started 20 years ago. There weren’t any other walks. I think the weekend of the last AIDS Walk had something like five other fundraising events going on. So, it doesn’t matter how well intentioned a person is, you can’t support everyone.”

Mayencourt, who has is also a founding board member of the Life Quilt for Breast Cancer, has some potentially controversial views about why HIV/AIDS awareness has dropped off in comparison with other health issues.

“I kind of feel that the way in which the AIDS community has operated has turned people off, has sent them away,” he confided. “It has been a very confrontational type of disease, whereas breast cancer, with its desire and its public lobbying and its awareness work has been more cooperative.  I think there’s a militancy that makes some people feel uncomfortable…There’s a chip on the shoulder because it’s somehow a gay man’s disease, and this has somehow happened to gay men…I’ve never seen a more political disease in all my life. It’s nasty.”

Lewand sees things quite differently.

“I think the gay community has done an incredible job of taking this from a non-issue and being aware of it before anyone else wanted to admit it,” he said. “People are now saying that we have to go back to the beginning of the movement, like the Act Up things. Maybe that’s the only way to open people’s eyes again. Unfortunately, it means sick people going to jail and court cases and civil disobedience cases and criminal records and all that stuff.”

Medicine takes toll

As for the cost of ignoring the disease, he had some words of warning for those who might believe the disease is now manageable. Everyone’s story is different, he said, and some people have less success with drug therapies than others – including himself.

“A lot of the protease inhibitors have got really nasty digestive side effects. Not being able to eat, constant diarrhea, muscle soreness, aches, peripheral neuropathy – that’s losing sensation in your fingers and toes. Dementia – you can’t even tell whether it’s the disease or the drugs affecting your brain. You can also get lipodystrophy. That’s not so much loss of body fat, but movement. Some people get it distributed in some really horrible places. When it happens around the neck and shoulders and even the face, it changes your whole life. Even if you could ignore it, the rest of the world isn’t going to ignore it.

“There are huge psychological side effects, and again, is it the drugs or the disease? The disease of course has a huge amount, but when you’re taking horrible untested poisons every day, on purpose, and you know they make you feel like shit, it makes you think strange things.”

For Lewand, whose life is now measured out in pills and tablets, the fight against HIV/AIDS is one battle that simply cannot be tossed aside.

“Of course, I’m extremely biased, but this is an important issue,” he said. He paused. Then, as more bodies scurried through the society’s front doors, he looked me in the eyes and repeated it with more urgency. “It still really is an important issue, you know.”

Jessica Werb is a Vancouver journalist with a focus on health issues.