As HIV morphs into a manageable illness, who manages the companies responsible for continued research, drug development, advocacy for the afflicted and, most important, our safety?

by Michael Liberatore

Since the mid-1990s, the face of HIV/AIDS has changed drastically. Many of us—survivors of the plague days of the 1980s—became complacent even as we mourned the passing of so many beautiful and vital young men: our friends, lovers and family members. In the ‘90s, it seemed that the general public and the pharmaceutical companies had finally gotten on-board—AIDS was the scourge of the century, and it had to be halted. With Bill Clinton in the White House, federal money began to flow for research. What we didn't realize was that the government-supplied monies were only a small fraction of the research and development budget needed to rein in the death sentence that was HIV infection. The bulk of the financial support was coming not from our tax dollars or the pockets of well-to-do Upper East Side and Hollywood-types. It was—and still is—coming from pharmaceutical giants.

Mike Barr, a former ACT-UP/NY member, began to worry that this money, valuable as it is, might be affecting the quality of AIDS medication development. In other words, if pharmaceutical companies were supplying the cash to develop treatments, couldn't they just as easily stall the development of newer, less profit-friendly treatments to assure that their bank accounts continue to swell? Where were the watchdogs to make sure money was being invested in the best interest of those afflicted with HIV? With AIDS service organizations heavily funded by pharmaceutical companies, and doctors receiving research grants, complimentary “samples” and, in some cases, extravagant gifts from these behemoths, who was going to blow the whistle if a bit of impropriety surfaced?

“There was so much pharmaceutical money sloshing around in the bank accounts of AIDS organizations, professional societies for HIV physicians, AIDS research centers, AIDS treatment newsletters and magazines, that it seemed high time someone start paying attention to this—and maybe ask if this arrangement was always as benign as was claimed,” Barr says.

“While the New York Times and New England Journal of Medicine were investigating and exposing flagrant conflicts of interest and abuse of power in psychiatry, diabetes and hypertension medical specialties, those same rampant conflicts of interest and abuse of public trust have never been explored in HIV/AIDS,” Barr continues. “And this is probably true for two reasons: the incredible success, until recently, of treatments in the field and the perception that nowhere is activism and watchdog-type vigilance more rigorous than in HIV/AIDS. But I would argue that those days are long gone. And all you need to do is look at the tax returns of many of these AIDS organizations to see that—not unlike the kidney, heart or cancer foundations—the lion's share of their funding comes from the drug companies, who obviously have no commercial stake in curing anything, but rather only getting as many people as possible to take their drugs for as long as possible. That's where we are in HIV medicine now.”

In trusting naiveté, we assume these companies are dedicated to curing illness. They are, after all, searching for the wonder drug that will make this 30-year-old plague vanish. Or are they?

“I can show you the exact words to counter this assumption in IMS Health, Decision Resource and DataMonitor marketing research reports for the mega-pharmaceutical companies,” Barr explains. “Successful prevention efforts are seen as ‘threats’ to earnings, and the leitmotif sprinkled over and over again throughout their strategic plans is ‘guarding against sales erosion.’ These are the same folks who fund and fly and feed just about every high-profile AIDS research, every AIDS clinician, every AIDS educator, every AIDS activist, every AIDS foundation in this country. If that doesn't make the hair stand up on the back of your neck, you are on too high a dose of an SSRI.” [Selective seratonin reuptake inhibitors are the most common form of anti-depressants.]

Despite this chilling revelation, Barr feels it's important to stress that AIDS doctors and AIDS activists aren't the villains in this scenario. “Look, they just do what is easy; they take the easy money. It's the system that needs fixing. Otherwise, all we can expect in the next 10-20 years is more of the same.”

No cure. No vaccine. And no new drugs to add to our small arsenal of highly effective medicines free of harmful side effects. Still, Barr is optimistic.

“Progress is being made,” he assures. “I just returned from this year's AIDS conference in Montreal, and I have to say I was pleasantly surprised to see that our efforts seem to be bearing fruit. Of course, I can't be sure that AIDS Transparency & Accountability (ATA) Watch has anything to do with this; it could just be a coincidence—or a convergence of our agenda with the current political climate of accountability and transparency. But compared to last winter's conference—where I was more or less single-handedly battling egregious censorship, conference organizers and, believe it or not, our own activist groups—I left Montreal last week realizing that, in fact, tremendous progress had been made.”