MH17 and the Importance of AIDS Conferences

The tragic Malaysia Airlines crash this week, and the news that at least six passengers of the 298 aboard were headed to Melbourne for the International AIDS Conference, has focused the world’s attention on the loss that people with HIV and AIDS around the world will suffer as a result. For some, the crash recalls the untimely death of Jonathan Mann and Mary Lou Clements-Mann aboard SwissAir 111 in 1998. The Manns warned early on of the coming global AIDS epidemic, and framed the spread of HIV as the product of social inequalities, rather than individual behaviors. Had the Manns lived, would global AIDS programs today look any different? Would they address the social conditions underlying the AIDS pandemic, in addition to offering condoms and ARVs? And how will the loss of Dr. Lange and those aboard MH17 shape the future course of the pandemic and our response to it, in ways that we can never know?

Dr. Simon Harris frames this question differently in a letter to The Guardian—why run the risk of gathering so many important minds together in one place, now that we have global communications technology? Can’t these meetings simply be held in the digital realm? Harris writes:

The overall loss of life in the Malaysia Airlines disaster (Report, 18 July) is the primary concern, but a separate issue is raised. Around 100 were scientists going to a conference in Australia. The number of conferences held worldwide is enormous, but is it not time to ask why such trips are necessary. The advent of large-screen TVs and rapid transmission of data and the spoken word mean it is no longer necessary to send thousands of people around the world at great expense often to the public purse (eg the universities) and at major environmental cost. People are already familiar with each other through Skype, telephone, email and the journals and, dare one say it, they are often an excuse to take the family on holiday. Now we have lost a very large number of people expert in the science of Aids. What cost will this be to those suffering from the disease?

For one, access to high-speed data is not the same everywhere; retooling international conferences in such a fashion could very well exclude those on the other side of the “digital divide.” But perhaps more importantly, international AIDS conferences like the one in Melbourne have given AIDS activists from around the world a space in which to meet, exchange ideas, and learn about one another’s struggles. Karen Timour wrote about her experience at the 1996 International AIDS Conference in Vancouver for thebody.com. She described the three-day “Community Forum” for people living with AIDS held before the conference in glowing terms: “The dorm bubbled with intense conversations, disputes and shared humor — living there was like being in the midst of a huge, HIV-positive United Nations.”

But these conferences have not only been uplifting personal experiences for AIDS activists—they helped enlarge the scope of AIDS activism, giving rise to the movement for treatment access in the developing world during the late 1990s and early 2000s. ACT UP Philadelphia was at the forefront of that fight within the United States, as they protested Gore and Bush during the 2000 presidential campaign, demanding that the U.S. government allow countries in the global South to produce cheaper generic versions of HIV drugs, or to buy generics on the global market. Speaking to Salon.com in 2001, Kate Krauss of ACT UP Philadelphia described the “searing experience” of meeting other activists who were dying for lack of treatment. Similarly, in an interview for this project, Waheedah Shabazz-El of ACT UP Philadelphia described her own experience meeting counterparts from the developing world, and the particular struggles they face:

I met a lady from Kenya–I was in Toronto at an International AIDS Conference and I met a lady from Kenya, and she was a village nurse. She went to school at the University of Kenya, but she worked in the small villages, and she gave out medication. And she asked me, “How often do you see a doctor? What kind of access do you have to your doctor?” And I was embarrassed to tell her how much access I have to my doctor. I know my doctor. I have my doctor’s cell phone number. I can see my doctor in the elevator, and if I need a prescription, before we get to the bottom floor, I’ll have the prescription. I have great access to a doctor, and I didn’t want to tell her that, because I knew where this was going. And then she said to me, “I go to the village, and I say to the people, ‘You must take these ARVs because they will save your life.’” She said to me, “What do I do when the people point to their bellies and say that their bellies are empty? What do I do?” She said that they share their medicine because they have to pay. And that they share their medicine, families share, because you have families that are infected, and they share their medicines amongst the family so nobody gets well. [1]

Doctors and scientists are indispensable to the fight against AIDS—no one could argue to the contrary. But international AIDS conferences aren’t only about the researchers. They’re also vital spaces for people living with HIV and AIDS to meet, learn from each other, and become advocates for their counterparts around the world when they go back to their home countries. AIDS is a global phenomenon, and these conferences have been crucial to helping shape the activist consciousness that engendered a global response.

[1] Waheedah Shabazz-El, interview with Dan Royles, June 5, 2012, Philadelphia, PA.

Halloween at Harvard with Nancy Pelosi: Tell Her to Stop the TPP!

Similar to the important stand that ACT UP Philadelphia and Health GAP took 10-15 years ago against the Africa Growth and Opportunity Act and the US Trade Representative’s threat of sanctions against South Africa. AIDS is not just a medical issue–it’s a social, economic, and political problem driven by other problems, including the growth of globalization and free trade policies.

Attitude

Join ACT UP and Student Global AIDS at Harvard this Halloween as they demand that visiting House Minority Leader Nancy Pelosi work to provide access to medicines, stronger environmental regulations, corporate oversight & government transparency!

When: Thursday, October 31st, 1:15 PM (we’ll be there before and after the speech, so if you can’t make it at 1:15, we need another big surge at 2:30)

Where: Inside Radcliffe Yard (10 Garden Street)

The Trans-Pacific Partnership is a massive free trade agreement being negotiated in secret by the US and 11 other countries that, among many other things, would severely impact access to medicines in developing countries, undermine environmental regulations, decrease labor standards, and block internet freedom. The Administration is trying to submit the TPP for fast-track approval, which means that Congress cannot amend and bypasses important Congressional oversight. The negotiations have thus far been secret, so members of Congress and the…

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Naina Khanna on Tyler Perry

WARNING: Spoilers for Tyler Perry’s Temptation ahead, although if you’re reading this, you probably already know what they are.

When I heard that in his recent film, Temptation: Confessions of a Marriage Counselor, Tyler Perry gives his female lead HIV as moral punishment for pursuing an affair with a sexy tech mogul while still married to her upstanding, if boring, husband, I resolved to see it as soon as possible, so that I could write about it here. [And a confession of my own: in the interest of camp, I wanted to see Kim Kardashian’s big screen debut.] I’ve been too busy to get to the movies, but Naina Khanna of the Positive Women’s Network–USA has an op-ed at poz.com that probably says everything I could have said, and more. Khanna writes–as an HIV-positive woman of color herself–in damning terms about the violence, both cultural and medical, that Perry’s work does to women of color living with HIV:

For the estimated 300,000 women living with HIV in the United States, Tyler Perry’s Temptation preys on the worst of all that. For this, I charge him with at least 300,000 counts of self-doubt and recrimination, a million moments of fear and hopelessness, hundreds of failures to disclose, countless refused HIV tests, thousands of missed medical appointments, suicides, homicides, and setting us back in our HIV response for over than a decade.

I must confess to never having seen any of Perry’s work, but he is an extremely successful filmmaker as far as the box office is concerned, even as he regularly draws the ire of film and cultural critics alike. At an academic conference at Northwestern, appropriately titled “Madea’s Big Scholarly Roundtable,” black academics picked apart Perry’s work for all of the ways that it reinforces norms of heterosexual patriarchy and conservative Christianity, both of which seem to be on display in Temptation.

No doubt, HIV/AIDS is a serious disease, and one that disproportionately affects African American women. Representations of that reality should do justice to the complexity of HIV-positive women’s lives, struggles, and successes. The disease is not a blunt storytelling instrument of moral condemnation, and using it as such is an insult to the women whose everyday courage proves otherwise.

SEE ALSO:

AV Club’s write-up of “Madea’s Big Scholarly Roundtable”

Positive Women’s Network blog post on Temptation (Waheedah Shabazz-El, a founding member of the group, longtime member of ACT UP Philadelphia, and oral history narrator for this project, is quoted therein)

Peter Staley in OUT; HIV drugs in South Africa

ACT UP Philadelphia protests Obama's AIDS policy. Photo by Kaytee Riek

ACT UP Philadelphia protests Obama’s AIDS policy. Photo by Kaytee Riek.

I was struck recently by a brief interview in OUT (or on their website anyway) with Peter Staley, a former member of ACT UP/NY and the Treatment Action Group (TAG), and one of the main protagonists in David France’s recent documentary, How to Survive a Plague. Staley laments the popular amnesia about the battles that he and many others fought in the 1980s and early 1990s to educate themselves and others about their disease, and to press for a government response to the epidemic. Although the film has raised some awareness among a new generation of gay men about the role of ACT UP and TAG in radically changing the meaning of HIV and AIDS for many in the United States, infection rates are still rising among gay men, and especially gay men of color.

Toward the end of the interview, Staley says, “We walked away in 1996, and it’s not over; it’s getting worse–and this time we’re not paying attention.” That’s true, up to a point. ACT UP did undergo a marked decline in the mid 1990s, but not everyone left the movement. ACT UP Philadelphia perhaps remained the most intact of the remaining chapters, as members worked to bring low-income people of color into the group by working with drug treatment programs, halfway houses, and AIDS service organizations with mostly poor and minority clients. Like many others fighting the HIV epidemic in black communities, they never “walked away,” and one goal of the African American AIDS Activism Oral History Project is to show that AIDS activism didn’t end in 1996 any more than the AIDS epidemic did.

The Staley interview resonated with me especially because I encountered it as I was preparing for a presentation at the annual meeting of the Organization of American Historians on ACT UP Philadelphia‘s evolving work during the late 1990s and early 2000s. Although the group worked on a number of issues, including prison healthcare, affordable housing, and federal funding for needle exchange, I spoke about their advocacy for low-priced medications for people living with HIV and AIDS in the developing world. With that in mind, I was delighted to see (via Joe.My.God.) an announcement that South Africa will begin offering a version of Atripla, which combines three antiretrovirals in a single pill, for only $10 a month. By way of comparison, the patented version of the treatment costs $2000 a month in the United States.

South Africa has its own tortured relationship to AIDS, including former President Thabo Mbeki support of HIV denialists, and astronomically high infection rates driven by structural inequalities that remain from the apartheid era. Given all that, it’s wonderful to see good news coming out of the country that reflects the hard-won gains made by an international coalition of dedicated treatments activists over the years, including Staley and ACT UP Philadelphia alike.

ACT UP vs. Paul Ryan

by Dan Royles

Via Joe.My.God.: Two protesters interrupted Paul Ryan at the Family Research Council’s Value Voters Summit, shouting, “Corporations are not people! Take the money out!” Although one of the women identified herself only as a “concerned citizen,” the other told reporters that she represented ACT UP Philadelphia, and in classic ACT UP fashion, had a bag full of press releases at the ready.

In the mid-90s, ACT UP Philadelphia began recruiting lower income people of color into the organization while other chapters nationwide went into decline. Along with the shift in membership, which reflected the “changing face of AIDS,” the group intensified its focus on issues of economic inequality in the AIDS pandemic, both at home and around the globe. In 2000, protesters from ACT UP Philadelphia and sister group Health GAP followed Al Gore on the campaign trail, demanding that generic HIV drugs be made available to the developing world. Their efforts have led some to credit the group(s) in part for George W. Bush’s announcement of the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2003.

How to Survive a Plague

by Dan Royles

The ACT UP/TAG documentary How to Survive a Plague, which has a theatrical release set for September 22, has an official trailer…

…as well as a tumblr of ACT UP images that also invites users to submit their own artwork about current issues. 25 years later, the posters that ACT UP and the associated art collective Gran Fury put together are not only arresting, but sadly still relevant.

Gran Fury poster from 1988. Source: How to Survive a Plague
Gran Fury poster from 1987. Source: How to Survive a Plague

All signs point to this film being an out-and-out tearjerker; the trailer alone made me cry. But the larger point seems to be not just to elegize a movement and the millions lost to AIDS, but to inspire a new generation of activists to address their own social justice concerns. In his review, Frank Bruni testifies to the film’s sense of hope for the potential of mass action to effect real change. Indeed, last year’s Occupy movement seemed to echo ACT UP in its tactics and targets, if not in the precision of its message, and the two groups collaborated on an action in April and one over the Fourth of July, and members of ACT UP Philly helped train Philadelphia Occupiers in direct action methods when the encampment was in place late last year. While ACT UP has largely faded outside of a few strongholds in the urban mid-Atlantic (ACT UP Philadelphia being the only continuously active chapter, by their own claim) the growing economic inequality in the United States coupled with the energy of Occupy protesters has some hoping that a new truly progressive politics might be possible in this country. Whether it will materialize, and whether it will in the end look anything like ACT UP or Occupy remains to be seen.

Incidentally, my goal in undertaking the African American AIDS Activism Oral History Project and African American AIDS History Project is also to inspire, as well as to inform. Of course, the interviews that I conduct are a critical piece of the research for my dissertation. But beyond that, by recording voices that have been left out of many popular and academic accounts of U.S. AIDS activism and collecting digital copies of materials through the African American AIDS History Project site, we’re creating a repository of materials that will not only be available to scholars, but will hopefully inspire people to get involved with important issues at a grassroots level.

Cross-posted at Ye Olde Royle Blog.