Ebola: the lessons from HIV

EMILY BASS writes: People infected with ebola will never form their own version of ACT UP. They can't. The course of the infection from diagnosis to severe, immobilizing illness is swift. Post-diagnosis, quarantine is mandated. There so many things that led to the birth of the extraordinary AIDS activist movement--led by and for people living with the virus--including the fact that some of the first people diagnosed were white North American men who expected and felt entitled to a prompt response from a functioning health system. But the lifecycle of the virus also played a role. A movement led by and for people living with a virus is only possible in the context of a virus that you can, yes, live with, work with, protest and organize with, without putting one's own health or the health of others at risk. Ebola doesn't allow for this sort of organizing. So there just won't be a peaceful army of people living with ebola protesting the government inaction, underfunding and stigma driving this new epidemic. The good news is, there probably shouldnt be. If change depends on disease-specific based advocacy, there's going to be a lot of duplication, a lot of wheel-reinvention, a lot of competition for limited resources and global attention. So it's both strategic (not to mention overdue) that long-time AIDS activists, many of whom have spent decades working on HIV, TB and malaria, are looking at how to apply the lessons from the ACT UP era to ebola, today.

There's now an ACT UP Against Ebola movement forming in the US, complete with its own Facebook page https://www.facebook.com/actupagainstebola?fref=nf. Some of the activity, both on the page and in rapid responses organized over the past week, are focused on replacing hysteria with rationality in the American Ebola response--which includes national guidelines issued by the US CDC as well as state-by-state policies that range from mandatory at-home quarantine for travelers returning from West Africa (a major disincentive to US health workers volunteering in those areas) to self-monitoring and fever reporting. (A great review of some recent activities can be found here -http://www.salon.com/2014/10/27/history_repeating_itself_aids_activists_slam_cuomo_for_stigmatizing_ebola_quarantines/ -- with regular updates on the Facebook page.)

The US response is, of course, focused on fear--and not fighting an actual ebola epidemic. The larger question facing this group and all concerned health activists is: How do we develop and implement an agenda that makes the response in West African countries grappling with the virus more effective. One key step is bringing the voices of activists from these countries--Sierra Leone, Guinea, Nigeria, Mali, Liberia--to the fore. This hasn't happened, yet, but the conversations are beginning to percolate and shift into proactive outreach to help define specific goals and solidarity actions. "There are isolated individuals who are talking about it," says Micheal Ighadoro, AVAC Program Assistant and Nigerian AIDS activist. "We haven't started having the conversations as a group.

Here at HIV R4P, this solidarity is extending beyond civil society. In her opening plenary, the Minister of Science and Technology, Naledi Pandor, MP, said that she had just instructed her staff to look into initiatives that would bring South African expertise to the fore. These efforts--which could have had an even greater impact had they been triggered six months ago--are still essential. And as the AIDS epidemic has shown, when activists from all sectors work together--anything is possible.