Sunday, June 19, 2011

Presidential charity and AIDS relief (by Skylanda)

Note: This summer marks the 30th anniversary of the identification of the first cases of AIDS - first called GRID (gay-related immuno-deficiency) - in San Francisco and Los Angeles. The transformational nature of this remarkable disease and the immense scars it has railroad-tracked across the world in the intervening decades should at least give us a minute of pause to consider the nature of poverty, disease, and inequality, and the way in which these things intertwine to drive health and mortality in our own country and abroad. I wrote the article below a year ago but never posted it; though the newsy parts are a year out of date, the overarching themes - I believe - are still relevant today, and bear repeating.

Next summer, just before independence day in 2011, a somber anniversary will mark the third decade since a handful of doctors in New York and Los Angeles noticed a peculiar constellation of pneumonias, skin cancers, and intractable diarrhea in otherwise healthy young male patients - patients who would go on to die as their immune systems withered into the dread affliction that we would come to call AIDS. In the intervening thirty years we have seen the AIDS pandemic transform from a disease of the globally connected to a disease of the global poor - as well becoming a chronic condition in wealthy nations while remaining a fatal infection in poor regions. Nowhere is this metamorphosis more apparent than in the recent flap over President Obama’s pull-back of AIDS funds to Africa at a time when Americans are struggling with basic needs at home. Desmond Tutu recently took Obama to task on the pages of the New York Times for failing to expand the President’s Emergency Plan for AIDS Relief (PEPFAR) program as much as promised on the campaign trail, adding only several hundred million rather than the promised $1 billion per year.

Support for AIDS drugs in Africa has been held up as shining moment of humanism in the otherwise dark years of the Bush reign, an anomalous moment of unbridled benevolence that defies an era shadowed by the unresolved neo-imperialist invasions of two sovereign nations and the spectre of Abu Ghraib and Guantanamo Bay. But the kindly glow surrounding the last ten years of US foreign aid for HIV in Africa belies another story, one far less charitable than the Republican propaganda machine at home and abroad would paint the legacy of the younger Bush - and revisiting the history of Bush’s AIDS program is key to understanding why Obama’s measured approach might underlie a wiser vision than Bush’s well-funded jump into the arena of AIDS charity.

In 2003 PEPFAR was initiated to provide a targeted plan for HIV-related aid in the hardest-hit regions of the world - twelve nations in Africa, two countries in Latin America, and one in Southeast Asia. PEPFAR boasted a multi-pronged plan for AIDS relief: over half of the initial $15 billion earmark would go toward direct treatment, and the rest would be split between palliative care, prevention, and care for AIDS orphans.

This historic public-health outlay toward drug acquisition claimed to put expensive medications in the hands of suffering patients unable to afford brand-new patented drugs freshly minted off the HIV pharmaceutical pipeline. In reality, the brain-child behind PEPFAR was a most curious - and decidedly uncharitable - source: the American pharmaceutical lobby itself, in a quest to protect its very lucrative market for antiretroviral AIDS drugs from the ravages of generic knock-offs rapidly emerging in industrializing second-world nations.

The peak of the pre-antiretroviral AIDS epidemic coincided with a curious moment in the history of globalization of trade. Even as the so-called second-world nations like Brazil, India, and Thailand were scrambling to join the spoils of the industrialized health era by knocking off expensive medications patented in first-world nations at cut-rate prices for use in the third world, the benefits of playing by the rules were becoming apparent, and nations at forefront of the generic pharmaceutical production gradually agreed to abide by international patent regulations on the lucrative drug trade. India, for example, signed onto the World Trade Organization in 1995 and was given 10 years to align its generics pharmaceutical production with world-wide patent law - a nascent industry upon which its burgeoning middle class is disproportionately dependent, largely due to a post-colonial era law that banned the patenting of food and drug products and fostered the domestic generic medication market. The WTO has no legal means by which to enforce intellectual property patented in one nation, but the threat of embargo against member nations who violate patents generally carries enough weight to prevent overt transgressions. The intervening decade saw radical advances in the treatment of cancer, HIV, and inflammatory conditions - just the sort of diseases that command a premium price for life-altering compounds, many of which must be taken for years to maintain effect. At a time when the AIDS cause was emerging from the ghetto of raucous demonstrations on the streets of San Francisco & New York to the upscale world of red-dress gala fundraisers on the doorsteps of Beverly Hills, first-world pharmaceutical companies were facing down the very serious prospect of losing an entire continent’s worth of profits to the generic knock-off market: if Africa could buy antiretrovirals from India or Brazil at a fraction of the cost, there would be no reason for tens of millions of desperately ill people to purchase the drugs from GlaxoSmithKline, Abbott, or Bristol-Myers Squibb for premium prices.

PEPFAR entered the fray the same year that Bush was ramping up support for the Iraq invasion, with all the warts and freckles of a pork-barrel gimme. The US Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2003 was fought and passed by a coalition of admittedly strange bedfellows, including the re-energized religious right (which, fresh from a long stint of blaming AIDS on a host of sinful iniquities, had unearthed a deep fount of salvageable souls in the epidemic), the increasingly verbose celebrity quarter in the form of Bono, and a newly-formed non-governmental organization from the pharmaceutical lobby which generously named itself the Coalition for AIDS Relief in Africa. Under the umbrella of a larger trade organization called the Corporate Council on Africa, prominent makers of HIV drugs - backed by the neo-liberal PR think-tank the Hudson Institute (whose notable other endeavors have included obfuscating science and policy on behalf of the tobacco industry and ominously equating Obama’s health care reform with nefarious quasi-Soviet intentions) - were successful in earmarking billions of dollars for pharmaceuticals alone and placing such stringent regulations on the drug sourcing so as to virtually guarantee that no generic knock-offs would be bought with those funds . In effect, PEPFAR enacted a massive subsidy of first-world pharmaceutical makers under the guise of charity - a sleight-of-hand so seamless that activists even applauded a law that set the stage for an invasion of inappropriately priced drugs and abstemious finger-waving at the expense of mass treatment and culturally-appropriate prevention programs.

In 2005 the US government saved millions of dollars by quietly tanking the anti-generics clause of the 2003 statute and accepting generic drugs that met World Health Organization quality standards into PEPFAR programs, but other problematic aspects of PEPFAR remained until the waning days of the Bush administration: a heavy-handed abstinence-only approach to sexual transmission of the disease, which decoupled the intricately linked issues of reproduction and sexual health; the open disbursal of funds to agencies that refuse to engage with the LBGT community; a ban on effective harm-reduction techniques such as needle exchanges; and an anti-prostitution clause demanding that sex workers sign an oath forswearing their trade - a particularly burdensome piece that put an untenable barrier between service providers and one of the most high-acuity populations in the heterosexual AIDS epidemic. (PEPFAR’s problems did not end there; its first appointed head - Randall Tobias, already criticized for conflict-of-interest over his former role as CEO of Eli Lilly - ended his diplomatic career in disgrace when his abstinence-only educational mission was tainted by his association with a notorious DC-based escort service from whom he admitted to receiving massages.)

Unsurprisingly, PEPFAR’s notable success has been a drop in mortality of 10% in first five years as the scaling up of treatment funds richocheted around the developing world, according to a 2009 study in the Annals of Internal Medicine. PEPFAR’s glaring travesty has been a wholesale failure of prevention, where five of the original fifteen target nations now a run an HIV prevalence in the double digits (the same study noted that the total number of people living with AIDS did not change at all, and the incidence - that is, the number of new cases - was not measurable with statistics kept by PEPFAR over that time). The tiny south African kingdom of Swaziland - which began receiving PEPFAR funds in 2007 - boasts the dubious distinction of suffering the world’s highest HIV rate: over twenty-five percent. Fully one of every four Swazis alive today carries the virus in their body - and almost one out of every two pregnant women in the tiny nation now harbors some spectrum of the disease - from the timebomb of HIV to the onslaught of full-blown AIDS. (Some believe the rate is not higher only because so much of the young, productive segment of the population has already died of it.)

Moreover, antiretroviral drugs are not benevolent, and they are not cures. They are profitable agents of life extension that come at a high financial price and severe physical cost: at the mildest, chronic stavudine users develop a disfiguring (and stigmatizing) redistribution of facial fat known as lipodystrophy; at worst, nevirapine commonly causes a severe allergy-like skin reaction called Stevens-Johnson syndrome that is brutally painful if not fatal in itself. In America physicians handle severe Stevens-Johnson cases with intensive care units and burn protocols; in sub-Saharan Africa, one finds little assistance for the intricacies of care for those who do not tolerate the medicinal miracles we bestow on them, and severe drug complications themselves are often as fatal as AIDS itself. Without top-tier infrastructural support beneath the bottles and jars of little pills, antiretroviral drugs become a poor answer to a question whose solution can only be prevention: stopping the disease from spreading in the first place.

Given PEPFAR’s checkered history, one might be tempted to understand the origins of the program as its most cynical core: a fatally efficient means of guaranteeing a continued market for profitable AIDS drugs far into the future - and a guaranteed payer so long as PEPFAR exists - by emphasizing drug distribution over prevention and engaging in high-minded and heavy-handed prevention tactics that were destined to fail. Though the generics ban fell away from the program shortly after its inception, the persistent theme of medical treatment over any reasonable approach to prevention remained the thorn in the rose of PEPFAR until the day that Bush left office in 2009. Seen through that lens, PEPFAR fits perfectly into Bush’s larger foreign policy doctrine: paternalistic, voraciously exploitative under a sheen of charity, back-handedly engaged with the highest bidder and loudest lobbyist, and with a keen knife-edge of fundamentalism that fused the abstinence-only PEPFAR rule with seemingly unrelated policy flubs like the global gag rule - which together paired to make his reign a particularly deadly time for women struggling with health and fertility in developing nations. And given that onerous history, one needs not wonder why Obama may be reluctant to follow blindly in his predecessor’s footsteps without a wholesale retooling of the whole paradigm of AIDS support to Africa.

Neither accolades for Bush or condemnation for Obama are in order at this juncture. Nor is a total junking of the treatment model - no small part of the PEPFAR legacy is a world where ten nations worldwide are now coping with known double-digit HIV prevalence rates, and the uncomfortable truth is that the majority of carriers in the world are unaware of their status: there is no escape now from the long, hard road of mass treatment with antiretroviral drugs.

But while PEPFAR is in limbo under Obama’s reign - with a questionable budget and unclear future - now is the time to pressure Obama to pull together a real strategy for AIDS relief around the world: a strategy not based on dual loyalties and appeasing lobbyist agendas, but on creating a future that looks profoundly different than the holocaust of the last thirty years. Envisioning this future requires us to remember the tactics that have proven to work, beyond the piecemeal outcomes measure of number of drugs dosed out: evidence-based approaches to education; balancing cultural appropriateness with cultural change; peer support for testing and compliance with treatment; social marketing campaigns that use sophisticated techniques borrowed from the world of advertising to move messages and effect behavior change; harm reduction, including condoms for sex workers and needle exchanges for drug addicts (as well as the poorly-heeded call to end the drug war itself); infrastructure to ensure that health care centers are not contributing to blood-born contamination; empowerment of women over their sexual choices; and most of all, community development to place the future of this work in the hands of those who will sustain it - not in the hands of the grinding international aid bureaucracy. In other words, effective AIDS relief needs to leave the model of charitable convenience and moralistic finger-waving, and grow up into the world of social justice.

No one could not reasonably expect that kind of radical policy departure from the waning Bush dynasty, and one should certainly not ignore the nagging voice of the skepticism that something rotten underlay the untarnished glow of the original PEPFAR charity. But we can expect better from Obama, if only we demand it of him. Desmond Tutu was correct; now is not the time to back down from aggressive AIDS intervention in Africa - now is the time to move forward: thoughtfully, carefully, re-imagining a global future in which a true partnership emerges between American generosity and the resilience of a continent not yet beaten by three decades of battering by the dual demons of poverty and a plague that no one could have conceived of in that fateful summer twenty-nine years ago. Reimagining a future in which the grim spectre of AIDS finally loosens its grip on Africa’s future.

Cross-posted from my recently relocated and relaunched blog, America, Love it or Heal It.