Health activism: The struggle continues

American director David France, whose documentary How To Survive A Plague was nominated for an Oscar this year, is currently in South Africa to participate in events around the Encounters Documentary Film Festival. How To Survive A Plague chronicles the work carried out by US activist group ACT UP from the late 80s to the advent of safe retroviral drugs in 1996, and the film hammers home exactly how much is owed to the intervention of these 80s and 90s health activists. Largely gay men, though women also played an important role, these activists formed themselves into an intensely effective machine to lobby for access to life-saving medication at a time when the US government was dragging its feet over drug trials for the “gay plague”.

ACT UP was not an uncontroversial organisation, and the film doesn’t sugar-coat this. There were internal disputes and in-fighting, and some questionable strategic choices. In 1989, for instance, around 4,500 ACT UP protestors descended on St Patrick’s Cathedral in New York to demonstrate against the Catholic Church’s views on condom distribution, homosexuality and abortion. Most of the activists gathered outside, but a few dozen entered the cathedral. Some staged a “die-in” in the aisles; some shouted “Stop killing us”; and one activist accepted a communion wafer and then broke it publicly.

France didn’t include this latter act in his documentary, he explained on Sunday, because he didn’t have any footage of it, though he did incorporate scenes involving the other activists in the cathedral. The demonstration attracted widespread condemnation for its perceived disrespect towards the church, including from some other activists and members of the LGBT community. Activist Zackie Achmat said after a screening of the film that he did not feel the church demonstration was a desirable tactic. France explained in response, however, that the cathedral in question was using its pulpit as a forum from which to deliver political speeches, and spread hatred, every week. Because of this political element, they felt the action was justified.

The cathedral protest may have earned ACT UP disapproval, but it also ensured a lot of media attention for the organisation. Theirs was an exceedingly media-savvy movement with distinctive, clear branding. They adopted Holocaust iconography for their logo: in Nazi concentration camps, homosexuals were forced to wear an upside-down pink triangle. ACT UP turned the triangle the right way round, and accompanied it with the words “Silence = Death”.

When Achmat and his comrades launched South Africa’s Treatment Action Campaign (TAC) in 1998, they adopted many of ACT UP’s strategies, and displayed a similar degree of media savvy. TAC also borrowed from the imagery of the Holocaust. It is said that the King of Denmark, Christian X, decreed that if Jews in Denmark under Nazi occupation had to wear yellow stars, then all the population would follow suit, rendering the identifying marker useless. (The story is, alas, untrue, though Denmark did carry out an effective collective resistance to the Nazis, which resulted in an estimated 99% of Danish Jews surviving the Holocaust.) TAC used this story as the inspiration behind their iconic “HIV Positive” t-shirts, at one stage a ubiquitous feature of the evening news bulletin; seeking also to make the point that you cannot generally tell someone’s HIV status by looking at them.

TAC, too, has occasionally attracted flak for its publicity tactics, including providing a significant presence at the funerals of those who have died from Aids. Around eight years ago, at a public event in Grahamstown, Nelson Mandela’s grandson Mandla accused Achmat of having turned his father Makgatho’s funeral into a media circus. Makgatho Mandela’s death at 54 from Aids marked something of a watershed moment, however, because of Nelson Mandela’s insistence that cause of his death be made public. “Let us give publicity to HIV/Aids and not hide it,” Mandela said at the time.

Given the parallels between TAC and ACT UP, there are few contexts in which France’s film will find greater resonance than in South Africa. (Ironically, the film that beat How To Survive A Plague to the Oscar nod was the Swedish-directed South African story Searching for Sugar Man. Not everyone was happy with this outcome: website Gawker wrote that “where filmmaking and reporting are concerned, [Plague] is infinitely more sophisticated than Sugar Man”. France said on Sunday that “we should have won”, although he noted that you do not make a documentary of this kind with an eye on the Oscars.)

TAC General Secretary Vuyiseka Dubula paid tribute to the debt owed by TAC to ACT UP on Sunday, saying that “the struggle in the US inspired our struggle in South Africa”. Dubula says she encounters people in South Africa who do not understand why TAC still exists, given that their campaigning and litigation against the government succeeded in making the provision of ARVs national policy for the last decade, at least on paper. But Dubula points out that many problems remain. “I don’t think that any South African who lives with Aids can confidently say that they will have access to treatment for the rest of their life,” she said.

Because the HI virus can quickly mutate to block the efficacy of medications, patients on ARVs need a “second line” of new medicines to replace the first, though usually not for many years. This second line regime may also eventually fail, however, in which case a “third line” of medicines would be called for. “Third line drugs are currently R35,000,” said Dubula. “And our current drugs won’t work for 80 years.” Recent research undertaken in 11 countries suggests that drug resistance increases by 38% each year as ARV treatment is rolled out more extensively.

In other words, the victories won by ACT UP’s activists were only part of the story, particularly when it comes to the needs of sub-Saharan Africa. Achmat highlighted some other interesting differences between the two health movements. “The most disappointing thing is that South Africa’s queer community had nothing to do with [the struggle for access to treatment], even though it was one of the most affected communities,” Achmat said. He also joked that in South Africa, people would be very surprised to see so many white people turning out to protest en masse.

Former health minister Barbara Hogan paid tribute to the role played by South Africa’s health activists, admitting that it was groups like TAC, rather than the government’s initiative, who forced action on the rollout of treatment. Hogan pulled no punches in assigning blame to the government. “How could [the government] let so many people die?” she asked, suggesting that clear answers to that question have still not presented themselves. “How is it that it was allowed?” Hogan said that more time should be spent facing up to the country’s past in this regard in order to safeguard the future.

Dubula had angry words for the perpetrators of corruption within South Africa’s overstrained health system, saying that she had recently seen for herself the effects of this on Eastern Cape clinics, under-stocked as a result. “You really want to go back to the department and moer someone,” she said. “It kind of eats you up. How did it come to the point where the health system collapses in the rural areas?”

Dubula advised activists to pick their battles carefully to avoid burn-out. Achmat had his own advice, drawn from the example of ACT UP, which placed a premium on research and education. “Activists must know their evidence better,” he said. He also called for activists to invest more time in educating the media on the relevant struggles.

A point tangentially touched upon by France was the role of social media and technology in activism. The ACT UP activists of the late 80s, he pointed out, had to employ “pre-modern organising” techniques. In a world without email or cellphones, if they wanted to discuss something, they generally had to meet face-to-face. They used “phone trees” to alert fellow activists to an upcoming event. Yet these methods worked surprisingly well for them. “When I first covered ACT UP there were 78 people meeting every Monday night,” France said. “Eventually there were a thousand people.”

France suggested that one of ACT UP’s great strengths was its ability to examine its own mistakes effectively. “Maybe the Facebook revolution doesn’t allow you to do that so nimbly,” he pondered.

A powerful reminder of the broader import of TAC’s work in South Africa was given by Hogan. “TAC was the first movement to take on a government that enjoyed enormous legitimacy,” Hogan said. Indeed, TAC’s skillful reframing of the Aids treatment debate as the “new struggle” made it a legitimate move for even staunch ANC supporters to take up cudgels in the fight for access to drugs. More recently established civil society groups like Equal Education have gone on to put the lessons learnt by TAC to good use, particularly in their deployment of targeted litigation and the cultivation of support from the communities most affected by government inaction. Today, Hogan said, there is a “Renaissance” of civil society movements who are openly critical of the actions of the government of liberation. For TAC’s role in the cultivation of such a culture in post-Apartheid South Africa, we should all be grateful. DM

Photo: A boy receives medication at Nkosi's Haven, south of Johannesburg November 25, 2011. REUTERS/Siphiwe Sibeko