One of the delegates at last summer’s huge 12th World AIDS Conference in Geneva was Farsai Mahaso, a soft-spoken 20-year-old man from Zimbabwe whose HIV positive mother had turned their home into a humble but buzzing center for people with the virus. There are no multimillion-dollar AIDS service organizations in Zimbabwe, and AIDS stigma is heavy. But at the Mahaso home, people with HIV received information and moral support. “Through the love of my mother,” Mahaso says, “they found themselves in good hands.”
One week before the conference, Mahaso’s mother died. If she’d had access to the combination therapy available in the United States and Europe, she might still be alive. But at the conference, Mahaso couldn’t avoid walking through the garish pharmaceutical-company displays advertising the very medicines his dead mother never had a chance to take. “People are dying and dying, and [drug companies] are getting richer and richer,” he says.
The excess of pharmaceutical marketing is neither new nor unique to AIDS. And yet, the theme of this year’s conference was “Bridging the Gap,” a reference to the horrifying gulf dividing the relatively lucky 10 percent of people with HIV in the developed North from the hapless 90 percent in the developing South, many of whom lack clean water, let alone protease inhibitors. Almost 3,000 conference delegates came from the South, often courtesy of special scholarships funded by drug companies, yet they were forced to run an emotional gantlet every time they passed through the pharmaceutical section.
There, booths as big as bungalows featured streaming banners, brilliant billboards, video displays and perky PR reps. DuPont Pharma’s booth featured a rising sun, while Merck’s was overrun with silhouetted mountain climbers ascending to the summit—a revolving, brightly lit advertisement for the company’s protease inhibitor, Crixivan.
It was an obscenity on a par with feasting in front of starving masses. “This conference isn’t about bridging the gap,” fumed one African doctor, who asked not to be named. “They are here to show us how wide the gap is.” Zambian journalist Larry Hore said tartly, “I feel mocked.” And then there was Consolata Odiembo Auma, a 32-year-old woman from Kenya. She’s been HIV positive for eight years, but antivirals are so far beyond the reach of her impoverished country that she had never even heard of them before arriving at the conference. “Maybe if I ask them,” she said with a shrug, “they’ll give me the drugs.”
Some drug companies are slashing their prices for a UNAIDS program in developing countries, a welcome and heartening trend. But as UNAIDS director Peter Piot noted, their motives are mixed because Third World countries represent “emerging markets, and this is a way for companies to get a foot on the ground.” In fact, the genius of the UNAIDS program is that it relies on capitalism; countries will pay for the medicines. While some corporate executives are personally committed—Paul Stoffels, for example, once worked in the Congo and now heads Virco, a Belgian firm that will be donating its drug-resistance assays to the UNAIDS program—profit will keep companies in developing countries far longer than philanthropy: If you can’t beat ’em, join ’em.
But realpolitik has its dangers. In a scathing speech at the conference’s closing ceremony, Richard Horton, editor of the British medical journal The Lancet, said: “It is almost as if we have all become so dependent on [pharmaceutical] hospitality—and we have—that we cannot bear to bite the hand that feeds us. And that failure seems to me a betrayal that gets bigger with the passing of each conference.”
“The degree to which our community lapped this up really bothers me,” adds Martin Delaney, founder of Project Inform, the San Francisco treatment advocacy group. Every night there were several lavish parties; perhaps the most extravagant was Glaxo Wellcome’s casino night benefit, which featured Miss America and Broadway belter Betty Buckley. “Activists were falling over themselves to get invitations to these,” Delaney says. “They convinced themselves they were exploiting the company, but you get sucked into it. Depending on how important you’re perceived to be, the right company people are bumping into your elbow, sitting next to you, getting a sense of what you think.”
Then, too, Delaney says, the conference is “a money spigot for researchers.” Each company hosts huge, well-attended “satellite symposia” featuring some of the brightest stars in the scientific firmament, such as Drs. Robert Gallo and David Ho. Dr. John Mellors spoke at five symposia, Dr. Julio Montaner at four. Mellors says his fee per speech is between $1,500 and $2,000, adding that he speaks “to get my message out.” Pharmaceutical insiders say speakers’ fees often run much higher.
Drug companies don’t ask researchers to say something they don’t believe or to spin their data. The companies don’t have to. They simply choose scientists whose philosophies mirror the company line. Why did Bristol-Myers Squibb ask University of Alabama researcher Jean-Pierre Sommadossi to speak? Because he has found preliminary evidence that AZT, made by Bristol-Myers Squibb’s archrival Glaxo, induces a special and long-lasting type of drug resistance (in which the cell, not the virus, stops responding to the drug). Why did DuPont hold a roundtable discussion titled “Protease Inhibitors—To Spare or Not to Spare”? Because the firm doesn’t have a protease inhibitor, and it hopes that everyone will indeed spare protease inhibitors and start with the company’s new drug, Sustiva.
Mellors is popular with the pharmaceutical companies because his most famous research shows that the less HIV in the blood, the longer a patient will live. The implication, which Mellors and many others scientists earnestly believe, is that it is beneficial to suppress the virus with any effective drug cocktail at virtually any stage of disease. This point of view makes him desirable to almost every company. But doctors who take an opposing view—arguing for patients to delay treatment because of possible side effects, difficulty taking the regimens as directed, or simply because no one knows how long the drugs will work—don’t get invited to drug company symposia. This is a major reason why many delegates at the conference worried that pharmaceutical marketing is drowning out balanced scientific debate.
Downright negative information is often just ignored by drug companies. When the fat and cholesterol problems associated with protease inhibitors were discovered, drug companies were slow to invest in studies to understand the problem. Only now have they begun funding this critical research.
Sometimes, pressure fails to move them. At the Geneva conference, Roche Laboratories touted its protease inhibitor, Fortovase. That’s simply a new formulation of the old Invirase, which was absorbed very poorly by the body. While Fortovase and Invirase are made of the same molecular compound (called saquinavir), Fortovase is absorbed much better and appears to be quite potent. But before Fortovase came out, doctors and activists had decried Invirase, arguing that its poor absorption would be the same as giving too low a dose, something known to promote drug resistance. They begged Roche to give the drug only to patients who had failed all the other protease inhibitors. Roche never acquiesced. At the conference, a Dutch study suggested that activists may well have been right. It concluded, “The use of saquinavir (Invirase formulation, 1,200 mg three times daily), was associated with a higher risk of virological treatment failure.” That study wasn’t prominent at the Roche booth.
In the South, patients would love to have the problem of a few bad apples in a bin full of 11 approved drugs and three more soon to pop out of the pipeline. As it is, they have nothing, and this was precisely the gap that the conference was supposed to help bridge. But The Lancet’s Horton noticed a disturbing “malaise among scientists, physicians, even activists” on this wrenching issue. “Why was it,” he asked, “that every day this week, whenever a speaker from a developing-world country rose to talk about an issue central to ‘bridging the gap,’ seats emptied and the hall began to bleed delegates?” Chastising this “shameful” behavior, he said pointedly, “If you walk out of the room when your own colleagues have traveled long distances in difficult circumstances to share their experiences with you, why should any government listen if you don’t?”
In another rousing plenary speech, Mark Harrington of the New York City–based Treatment Action Group pointed out that “political pressure, not science alone” brought forth the lifesaving drugs. Now, only activism can get those drugs delivered where they are needed. It is fashionable to ridicule ACT UP, and, indeed, some of their tactics have worn thin, unable to rouse many people from their malaise. But that may be another Third World/First World gap. When ACT UP seized the stage and unfurled its banner decrying corporate greed and demanding treatment access for all, Farsai Mahaso was hit hard by the unfairness of a world divided by poverty and profit: “I suddenly saw things back home, where people are dying because they don’t have these drugs, and I started crying.”