The power of the patent to determine life or death has always been troubling for HIV activists. Since the development of the first antiretroviral drug in the late 1980s, struggles over medication prices and accessibility have been a hallmark of the fight against HIV. The first drug used to treat the disease, AZT, was produced by Burroughs Wellcome (now GlaxoSmithKline) and priced at an unbearable $10,000 per year when it went to market in the United States in 1987. With treatment out of reach for their friends, lovers, family, and themselves, members of the newly formed ACT UP (AIDS Coalition to Unleash Power) ramped up the pressure on the pharmaceutical industry and the structures that supported it. Over the next few years, they blocked traffic on Wall Street. They closed themselves in Burroughs Wellcome offices. They demonstrated at the New York Stock Exchange. They shut down the Food and Drug Administration. They rallied at the National Institute of Health offices. They made clear that financial interests were controlling the treatment options of people with HIV and that government was paying twice over, once for the research and then again for the drugs. Publicly funded research was being turned into private profit.
But that was then. Is there a more humane system now? Journalist Anne Marie Ruff tackles this query in her recently published novel Through These Veins, imagining what would happen if a cure for HIV were found. The story begins in a remote community in Ethiopia, where a pharmacist develops a cure for the disease using local plants. A visiting Italian scientist secretly gathers a few of the leaves and sends them to a university researcher in the United States for verification. When a scout for a giant pharmaceutical corporation gets wind of this, the company immediately takes over the research, intent on patenting the drug.
Pharmaceutical companies say that profits are necessary to drive research and development and support the manufacture of medicines. Through These Vein’s pharmaceutical scout, Ruth, is portrayed as an ambitious though caring and loving person, but in the context of a system of pharmaceutical profit seeking, her individuality is of less importance than her role. Robert, the university researcher, has a long and in some ways intimate relationship with Ruth, yet still thinks of her as one of the “parasites trawling through publicly funded research looking for substances they could shepherd to market” (p. 47). For his part, Robert can’t delude himself into believing he plays a neutral role: “As a government scientist – an ostensibly neutral party in the pharmaceutical pipeline – he was subjected to relentless influence peddling from the top pharmaceutical companies” (p. 47). His work is also directed by government priorities, as seen here: “The latest Congressional budget required funding cuts to the National Institutes of Health – again. The natural compound research, especially in the HIV research track, would inevitably be slashed” (p. 41). Of course, “if they could align more closely with the cancer track,” the funding trend du jour, “they might have a better chance of getting their overdue budget increase” (p. 41).
Ultimately, the pharmaceutical industry’s focus on the profitability of therapy trumps any concerns about what is best for people with HIV or the cooptation of indigenous knowledge and resources. The seeming goodness of the characters caught in the web—Zahara, the daughter of the Ethiopian pharmacist; Ruth, the pharmaceutical scout; Robert, the university researcher; and Stefano, the Italian scientist—can’t stop profit from dictating global health. If Through These Veins conveys one idea clearly, it’s that system overhaul is needed. Ruff (who has directed profits from the book towards the Médecins Sans Frontières Campaign for Access to Essential Medicines and the Institute of Biodiversity Conservation in Ethiopia) has written elsewhere that “we need different models, different kinds of institutions to fund the research into diseases, treatments and even cures that are unattractive to the pharmaceutical industry. The Gates Foundation is an excellent example of what other kinds of organizations can do.”
While powerful philanthropists may fund lifesaving measures, contextualizing them within the economic history of the HIV epidemic brings to light some interesting trends. In “From saving lives to cutting costs? Challenges for a new era for activism,” Steven Robinson argues that in an early period, HIV was made into “a global justice, global health and global security issue” through the “sustained mobilization of AIDS activists and health experts”:
In the mid-1990s, HIV/AIDS came to be framed as an exceptional problem that required emergency relief interventions, thereby making it possible for massive government, humanitarian and donor resources to flow to HIV treatment and prevention programmes. During this period conventional neoliberal economic thinking was suspended in order to save lives (see Ingram, 2012). The exceptional status of HIV/AIDS also made it possible to challenge the global pharmaceutical industry over generics, and thereby challenge the World Trade Organisation’s Trade Related Aspects of Intellectual Property Rights (TRIPS) protection of patents and intellectual property rights regimes.
The characterization of HIV as an exceptional crisis, where individual lives and the government interventions needed to save them took precedence, led to vital financing that went against the austerity agenda of the 1980s and 1990s, says Robinson:
However, at the same time, this phase of ‘scaling up’ treatment also witnessed the massive involvement of philanthropic organizations such as the Gates Foundation that reintroduced neoliberal ideas and practices by the backdoor. These organizations did this by establishing public-private partnerships, and promoting managerialist approaches that focused on entrepreneurialism, market mechanisms and the commodification in global health governance.
Today HIV is no longer characterized as an exceptional crisis, as an exceptional disease, but as a chronic, manageable one. The pressure is letting up and significant sources of treatment funding are receding. To be sure, the fight against HIV was never fully resourced. Stigma, racism, homophobia, and a lack of regard for the poor—the feeling that AIDS happens to them, not us—prevented the coordination of a full-out struggle among the world’s governments. But in a renewed context of recession and austerity, wealthy donor countries are now claiming they have to reduce funding, even for programs on which lives depend. The Global Fund to Fight AIDS, Tuberculosis, and Malaria has been threatened by the funding cutbacks imposed by donor countries. Likewise, under Obama, the budget for PEPFAR (President’s Emergency Plan for AIDS Relief) has been reduced.
And then there’s the Trans-Pacific Partnership, an agreement being pushed through by the United States for the Pacific region. Just days ago Canada formally became party to the agreement, joining Australia, Brunei, Chile, Malaysia, Mexico, New Zealand, Peru, Singapore, and Vietnam. The so-called trade agreement covers a range of issues not centred on trade that we should be very concerned about—and yet it’s being drafted in secret by governments and corporations, details withheld from the very public that will be hugely impacted by it. Media coverage has been poor, and the agreement little discussed and debated. We know only bits and pieces, and those leaked bits and pieces are enough to warrant an ACT UP-style uproar. The Trans-Pacific Partnership is set to include the most severe pharmaceutical patent protections we’ve seen yet, which will put HIV drugs beyond the reach of many, many people. Which will mean more sickness. Which will mean more death. Which will mean all that talk about an AIDS-free generation was just that. Talk.
The next round of behind-closed-doors negotiations takes place in Auckland, New Zealand, from December 3 to 12, 2012. Anybody feel like going?