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Two years ago, Lisa lived on the street, addicted to heroin, and was slowly dying of an HIV infection that received no treatment. Today, she sits in a room three storeys above Hastings Street while Dr. Susan Burgess places a stethoscope to her chest. Lisa is small, pale, and a little dazed. Her meth-addled boyfriend just stormed off. The peanut butter and honey from breakfast still stick to her fingers.
“I was sick every day before,” she says. “But now Susan and the nurses can make me healthy, right? The smallest scratch, they care. Susan knows how everything is with me.” And why does the doctor come to her, instead of the other way around? “Lots of reasons. I mean, for one, sometimes the methadone makes it so I can’t get out of bed.”
Burgess does 40 to 50 house calls like this every week, attending to 200 patients who would otherwise be lost to care for a multitude of reasons (including outright fear of standard medical institutions). She writes a prescription for Lisa’s chest infection, checks about her HIV meds, meets the new kitten, and is back on the street in less than 10 minutes.
There are many people receiving treatment like Lisa’s because the B.C. government has invested $48 million in a pilot project conceived by the B.C. Centre for Excellence called STOP HIV/AIDS. The program has paid for new street nurses, new advertising campaigns, HIV testing fairs, and more, in an aggressive four-year push with two ultimate goals: universalize HIV testing (i.e., everyone gets tested, whether they’re “high risk” or not); and massively expand the delivery of HIV medication to hard-to-reach people, like Lisa, in the Downtown Eastside. (A concurrent program is running in Prince George.) The STOP stands for Seek and Treat for Optimal Prevention; it is a blitzkrieg in the war on HIV.
All this is predicated on the fact that Lisa, an HIV-positive person, cannot infect anyone else (via sex or through needle-sharing) if she’s taking her pills—the amount of virus in her bloodstream is so low it’s undetectable. But like hundreds of others, she will only take her pills if a health-care worker shows up weekly (or daily) to remind her. The promise of the kind of care STOP AIDS provides is enormous: if everyone were so treated, the spread of HIV would be essentially halted.
Alas, facts often promise things realities cannot support. And in the rush to end a health crisis with pharmaceuticals, some are arguing that untenable breaches of civil liberties are taking place.
Micheal Vonn is one of the smart and bellicose lawyers at the B.C. Civil Liberties Association; she has the skeptical look of a young Fran Lebowitz. And she’s lately been fielding complaints about the STOP program, which, she charges, promotes the population’s health at the expense of individual rights. (Vonn herself has worked on HIV/AIDS programs since the 1980s, and now serves on the Canadian HIV/AIDS Legal Network board of directors.)
Vonn’s concern is that, under STOP, the treatment of people like Lisa has been subsumed by the greater good. “What we are seeing,” she says, “is a switch from talking about the patient’s rights to talking about ‘population ethics.’ But what the hell are population ethics?” What the hell they are, are positions by which public good is held in balance against what’s good for the individual (akin to the way a corporation’s rights can be considered against a worker’s rights). “Before the health of entire populations became the focus,” says Vonn, “we did something called ‘health promotion,’ which helped people make healthy decisions, instead of making healthy decisions for people. It seems to me that giving people control over their own health is, well, key.”
It was a no-brainer for early HIV/AIDS efforts to focus on personal decisions like condom use when Big Pharma was coming up empty. STOP, with its arsenal of rapid-testing systems and effective drugs with minimal side effects, is playing with new rules. But as rely more on pharmaceuticals and less on personal choices, has the patient not become a passive agent of his or her own health? Notes Vonn: “STOP is predicated on a raft of assumptions, including: everybody will be successfully treated; the only rational choice is to take medication; everyone ought to start taking medication whether they are sick yet or not; and HIV-positive people can be ‘found’ and treated immediately. If we think about this in a real-word context instead of just a mathematical presentation, we see that the lived reality is far more complex. We simply are not sure.”
STOP is seeking out those who don’t know they’re positive and then insisting on treatment, goes the argument, without reference to their individual needs or circumstances (and, potentially, without reference to their choices). Cindy Patton, a sociology professor at SFU, recently suggested that the “universal care” that gets referred to in STOP documents, should really be called “population control.” Backing her up, a doctor at St. Paul’s Hospital who works in the HIV ward (speaking anonymously) says that STOP allows him to track down and push treatment on patients who have already decided to ignore medical advice. “The troubling part in all this,” he says, “is that it assumes certain types of people don’t get to have their decisions respected.” Ignoring medical advice, though it may be as ill-advised as continuing to smoke or becoming obese, is one of those stubborn rights we have under Section 7 of the Charter of Rights and Freedoms. We are meant to be the masters of our own bodies. Vonn sees great danger in allowing ourselves to become, instead, tallies in the scorebook of “community health.”
That greater good, that public-ness, includes all those test results, too. Until recently, says Vonn, written consent was required before a person’s HIV test results could be shared with anyone other than the Medical Officer of Health. Today, however, all HIV test results flow into something called PLIS, which is the province’s first health information bank. This became possible after privacy protections were removed from our Communicable Disease Regulation in November 2010. The information in that health bank is available inside Canada and out for research purposes, and can be disclosed to an array of service providers and support staff, including occupational therapists and dietitians. Ultimately, Vonn believes a constitutional challenge will be necessary to ensure core medical privacy rights in B.C. But this is far from a localized issue. In Ontario, the Canadian Medical Association Journal reported, legal experts were “stunned” and “appalled” last summer when provincial officials announced their plan for electronic health records that would include a patient’s legal and financial history.
“If you don’t want your information visible in these systems,” says Vonn, “you’ll need to apply for a Disclosure Directive. It’s a large, bureaucratic process that can take months. There are all kinds of other health information banks in the works, too, and you’ll need a separate Disclosure Directive for every one of them. Of course it’s totally unworkable.”
Libertarians will charge that STOP’s “treatment as prevention” is in line with a larger movement toward a nanny health-care system: all will be monitored, and personal responsibility de-emphasized. But the simple question is this: if STOP’s aggressive pushing of tests and treatment really does save more lives—if STOP actually does stop AIDS—then are all other concerns not secondary?
Dr. Julio Montaner—lean, furrowed, silver—is probably a genius. In 1996, he was a key player in the discovery of the drug cocktail that largely halted AIDS deaths. He has served as president of the International AIDS Society. Some of the world’s most prestigious thinkers (including Stephen Lewis and Michel Sidibé) will drop everything to hear what he says. It was Montaner who, at the 2006 International AIDS Conference in Toronto, began the rallying cry of “treatment as prevention.” He has, undoubtedly, steered the course of the world’s HIV/AIDS strategies.
When he hears people complaining about his methods, there’s a weary note to his reply: “Am I satisfied with the level of security in our eHealth system? It could be better, yes. But I think it’s immoral that we should stand by and watch people die because of that. We cannot stop testing people because of these issues.”
Just how many B.C. residents his program could eventually “identify” and then treat is unknown. Best estimates are that 12,000 to 14,000 in the province are HIV-positive; only half are taking medication. But we do know that halfway through STOP’s four-year trial, HIV-positive people are now more likely to take their meds—in part because the meds themselves are easier and more efficacious. Further, B.C. is the only province in the country showing a decrease in the number of new HIV diagnoses. (There were 301 new HIV diagnoses in B.C. in 2010.)
Such optimistic trends could rationalize any health policy to some minds. It would be a mistake, though, to characterize Montaner as a Machiavellian scientist for whom the ends always justify the means. He has declared that mandatory testing or treatment is out of the question (and said as much to Russia’s Minister of Health on a recent visit). “Mandatory anything,” says Montaner, “simply does not work.”
He is, however, deeply invested in the normalization of HIV testing. Minutes after saying that he opposes mandatory testing, Montaner states that the STOP strategy ought to become universal. “We now feel that to control the epidemic we have to expand testing to every adult,” Montaner says. “So, for example, hospitals ought to offer patients HIV testing regardless of the reason they came into the hospital, whenever blood work is being done.” HIV testing, thanks to simple new technologies, is also being carried out in conjunction with flu shot campaigns and can even take place in non-laboratory settings. Since the most disenfranchised populations are the least likely to visit a lab, the lab will come to them, to the very street corners where they hang out. Incentives are used, too, at those non-lab settings, to encourage people to submit to testing—a $5 Army & Navy gift certificate, for example.
All that new blood work, to the chagrin of skeptics, flows into the B.C. Centre for Excellence. All that free testing, all the free pharmacological assessments, and all the free treatment are maintained and centralized through Montaner’s team. And whatever the privacy concerns, it has made the centre a light of hope for researchers around the planet. “In other places,” says Montaner, “you ask research questions and they give you an ‘Ummm…’ because there is no centralized testing and treatment program.”
In contrast to the ad hoc programs that dominate most HIV work, Montaner’s centre stands out as a highly regulated fulcrum. “We have established,” he says, “a centralized, roughly independent program, generating our own guidelines, so we can increase our effectiveness. As a result, we’ve transformed the province into a self-learning machinery. It has given us an edge over time. We can figure things out that others cannot.”
If Montaner’s work is questioned at home, his results are pined for abroad. Aggressive “seeking and treating” has become a call to arms. In China, where 74,000 people are known to be HIV-positive, the government has adopted Montaner’s strategy. Bill and Hillary Clinton have each endorsed Montaner’s work as the best way forward, as has Barack Obama. And the approach is making headway across Africa, too. The Economist, reporting on the last International AIDS Society meeting, stated that Montaner’s ideas are the surest sign that there’s a chance to bring things under control. (In Canada, meanwhile, Stephen Harper continues to ignore Montaner’s work and refuses meetings.)
Back on Hastings, Dr. Burgess is midway through her day’s labour, which she describes as “basically keeping them alive until medical environments become more welcoming.” There’s been Tony, whose veins are so brittle that blood samples are difficult. Dan, who has managed to evade blood work for a year now. And Christie, who barricaded her door and wouldn’t let anyone in.
Driving down the street, Burgess shouts out the window at a stop light: “Rebecca! Rebecca! Do you need your meds? You’ve got enough meds?” before turning down the block to Carrie’s place.
There’s a crack pipe on the coffee table, but otherwise it’s homey enough. Burgess hands over some cookies and gets to work. While she’s on the phone with a pharmacy, three nurses arrive with a week’s worth of HIV medication. It’s a strange party. Carrie is resigned to such unscheduled drop-ins, like a child who expects neither autonomy nor privacy.
After Carrie was identified as HIV positive Burgess spent three years trying to meet. It only happened, in the end, when she discovered the front door was unlocked; she decided to let herself in. And there was Carrie, passed out on a mattress. Some might call that a breach of privacy. It was also Day 1 of treatment.