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Acting Up for Ebola: International HIV Activists Launch Solidarity Call

October 23, 2014

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Global health journalist, activist and author Anne-christine d'Adesky

Global health journalist, activist and author Anne-christine d'Adesky

"We need an ACT UP for Ebola. Act Up, Fight Back, Fight Ebola!"

That message, shared via the Internet with increasing hourly frequency in recent days among seasoned AIDS activists, has captured a growing sense of urgency for movement-level activism to address what some call AIDS on steroids -- the fast-moving, deadly Ebola epidemic.

"Epidemics need to be ignored to flourish. We learned that from AIDS," says Gregg Gonsalves, a leading voice in the International Treatment Preparedness Coalition (ITPC) for HIV. "This was a 'manufactured' crisis. I mean that in the sense that the epidemic began in March and it was clear within a few weeks that it was spreading dangerously. The world decided not to act and even now the response is not commensurate with the need. We need to stand with West Africa and we should fight for them. We know how to push governments to do the right thing. Act Up for Ebola!"

As many pundits have observed, Ebola has freshly exposed the weakness of the global public health response, and of national health systems in poor countries. Liberia, Sierra Leone and Guinea are hardest-hit by Ebola now, and it's fueled by fragile health systems and governments recovering from civil wars. The key components of an effective emergency public health response -- public education, rapid screening, and treatment for disease, ethical access to drugs and vaccines, financing and leadership -- are all in limited supply. As in the early days of AIDS, activists see too much politicking and a lack of overall coordination as the key problems, making them critical targets for protest.

Who Is Politically Accountable?

"We need to identify who is politically accountable," says Rachel Cohen, a long-time AIDS activist who has worked for Housing Works and Doctors Without Borders/Medecins Sans Frontieres (MSF). "This is part of our political education from AIDS, to quickly find who is politically responsible, what is in their capacity to do, and hold them accountable."

"How is it possible that the group people are turning to, clinically, as setting the gold standard, is a private NGO?" asks Cohen, who says many governments are abdicating their role. "Where has WHO been? There is still not sufficient leadership or coordination coming from governments or intergovernmental agencies. It's incredible."

While an Ebola Czar was recently named in the United States, AIDS activists see a need to hold agencies and leaders accountable. "This is a political crisis and we have three decades of experience," Gonsalves says, putting it bluntly: "We need to be on the phone and in the offices of our representatives and senators 'acting up' on this shit."

Stigma: "It's Like HIV All Over Again."

Nigeria is cited as an Ebola prevention success story, having quickly contained its few early cases. There, Dr. Morenike Ukpong is an HIV medical ethics and research expert.

"Just like HIV, patients who have had EVD (Ebola Viral Disease) face stigma and discrimination," she states. "Evidences from the HIV global movement show clearly that stigma would need to be tackled from two ends: education of affected communities and provision of counseling, and building the competency of affected populations to cope with the stigma. Secondly, just like HIV, we do now have children orphaned by EDV who also face the challenge children with HIV faced. Community education would make a difference."

That's also true for African diaspora communities facing growing stigma.

"It's like HIV all over again," says Kim Nichols, executive director of African Services Committee, based in New York City. "Here, we're in the stage of people being so scared by what they don't know. There is xenophobia, even of U.S. travelers who might have been in the region. It's a hard moment."

Nichols cited a colleague just back from Liberia. "You can't believe how many meetings and conferences she has been disinvited from," she says. "It's plague time."

She also draws useful lessons from HIV for Ebola. "What we could have done better is community involvement and community preparedness within the first-line responder response," says Nichols. "In the early days of the AIDS epidemic there was caregiving and home care. That is something we direly need now (with Ebola), and we need to be prepared to do screening and care here, too."

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