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Interview with Mardge Cohen, Co-Founder of WE-ACTx

Interview With Mardge Cohen, Co-Founder of WE-ACTxWomen’s Equity in Access to Care & Treatment, or WE-ACTx, aims to provide the women and children of Rwanda with proper access to healthcare and treatment. Nearly 10 years after the Rwandan Genocide, this HIV/AIDS initiative brought much needed aid to communities of women and children in Kigali. Now, more than 12 years later, the organization continues its work, offering not only clinical care and mental health services for people infected with HIV/AIDS, but also youth programs and support with income generation—aimed at addressing both poverty and malnutrition.

I caught up with Mardge Cohen, co-founder of WE-ACTx, and spoke a bit about the organization’s origins, progress and successes, which have allowed this quite exceptional organization to thrive among the people of Kigali, Rwanda.

Tell me, how did WE-ACTx begin?

“The organization was started in 2004. We went to Rwanda because one of the other people who formed the organization, named Anne-Christine d’Adesky, a journalist, had been writing a book about HIV and women. She had been to Rwanda and these heads of associations talked to her about how the women of Rwanda, who had been raped during the genocide and were then infected with HIV, were not getting access to medicines for HIV. But the men who raped them, who were in jail, were getting medicines for their HIV. These women thought that was very unfair, and they asked Anne-Christine to bring a bunch of physicians and advocates to help fast-track medicine for these women because they were getting very sick and dying.

The genocide was in 1994 and this was in 2004, and it takes about a decade, 10 years, after you’re infected with HIV to become very sick. The women were just getting sick and the leaders of these associations wanted to do something about it.”

Do you feel that these at risk populations of Rwanda are ignored by the government, or were ignored?

“In 2004, nobody was getting medications for HIV. It was before PEPFAR (The U.S. President’s Emergency Plan for AIDS Relief). It was before the global fund. It was at a time… you know I’d been working on HIV since 1987, and people were saying things about Africa: ‘Well, we’ll just give them medication for pneumonia, for prophylaxis. We can’t afford… and the people in Africa wouldn’t know how to manage, there isn’t a good enough infrastructure to manage the antiretroviral therapy, so we’ll just ride them off.’ And they were going to ride them off. You know, right now there are 36 million people living with HIV worldwide and 26 million of them are in Africa, and most of them are in Sub-Saharan Africa.

That’s an enormous number of people that people were thinking of just riding off, so the governments of those countries in Africa really had no wherewithal to actually help people. The drugs weren’t there. They weren’t letting the drugs get there, so my feeling is my experience in Rwanda was in fact the government seriously wanted to help people. Once medication became available, they figured out ways to actually control the dispersal of the medicine so that it got out to people, and they tested everybody. I was aware of some countries where tests got outdated, expired, in garages and never got to people—that’s not what happened in Rwanda. In Rwanda, they really tried.”

You didn’t face much resistance from the government?

“Well, our approach was a little bit different from the government’s because our approach was very women-centered and youth-centered, and their approach was more decentralized… sort of a public health model where people would just go to the nearest clinic to where they lived. Everybody would sort of be engaged in the healthcare system that way, but because HIV comes with a lot of stigma people didn’t really want to go to clinics near where they lived. Women sort of liked the idea of going to a place that cared about women and worried about their emotional reaction to HIV, gender-based violence and helping them try to become productive members of society—not just worrying about HIV as it affected the baby or the husband, but rather cared about them as real people. So, people wanted to come to our program even though it may not have been a neighborhood clinic.

That was a little bit problematic for the Rwandan government. They didn’t like that so much, but they then saw that we did very well with connecting women to care and having people with very good retention rates and adherence to medication. Then, after a while, we had a lot of good youth programming because we had so many women who they had kids—a lot of attention to youth friendly programs. Then we got on better with the Rwandan government public health system and now we’re in very good shape. We do a research program with their principal investigators, and we’re principal investigators; It’s much more collegial.”

What did you have to do to overcome cultural differences? I know that specifically in Rwanda, people don’t very much like to talk about things involving sex.

“So, there was a pretty big public health campaign to get people tested. And, you know, in Africa it’s said that one of the major risk factors for a woman having HIV was being in a monogamous relationship with her husband. It’s just that he probably is not in a monogamous relationship with her. Women who had done everything they were supposed to do, get married, have children, they were at risk for HIV. As a result, we didn’t really have to have that many difficult conversations with them, but they were reticent to talk about things… but after a while, we used a model of peer advocacy.

We found some Rwandan women who were HIV-infected who were sort of a bit more leader-ish and wanted to sort of help other women. We utilized them to help us understand what the cultural differences were and for them to sort of share with the other women what efficacy the drug we had and the approach we were taking. That really, really helps—a peer model really got through some of those cultural differences. I think one of the things that I learned was that you have to be very patient; I’m a very impatient person and things are very slow, and change happens over a long period of time. It’s not quick. There was a lot of stigma related to HIV and there still is because we went there 11 years ago and now its 2015 but there’s still a lot of stigma.”

Did you do some advocacy in the community to try to change that perception?

“We did, especially if there were kids in schools or if there were neighborhoods that were giving people a hard time or landlords who kicked people out of their homes. We did legal training of advocates to sort of have the people… you see, there aren’t that many lawyers in Rwanda and the case loads that they have are so great that there’s sort of a paralegal system and we try to train our patients—a significant number of them—to participate that way in dealing with those issues. That sort of helped. We also tried to provide a very joyous atmosphere for the children because their lives are pretty rough, and every year we have this thing called ‘Day of the African Child’—a big party for all the families, like 1,200-1,400 people come and have a big party and its just to celebrate that they’re alive. Those kind of thing help the parents and the patients realize that we were not trying to get away with anything or do anything bad, but really just trying to provide a better quality of life for people who are HIV-infected.”

Was it a bit difficult to break into the community in Kigali?

“Well, luckily, these groups—these women’s groups, these leaders who had spoken to my friend Anne-Christine d’Adesky—they were still there. Initially, it started with 5 groups, and they called us in and told us where to go and they told us what to do, so I never felt like I was . . . bringing our stuff and putting it on people in Rwanda. I felt that the Rwandans had called us in. I thought that we were very lucky to have that approach, and they told us what they wanted from us. That made it, I think, a good way to be in another culture, in another country, and we’ve maintained that. We have partner association meetings four times a year where we review what’s going. We didn’t have to put up a shingle and hope people would come. Basically, those associations keep bringing their members to us, so I think it a pretty good model for being connected to community groups. You know, AIDS groups, women groups, local groups, service groups…

Then there’s the issue of the genocide and I think those are some of the lessons we learned, too. In some of the groups, people didn’t always want to work together, and we had a sort of… We didn’t understand that, or we didn’t think of that as behind some of the problems that we encountered, but it sometimes was. But now, the staff is sort of mixed grouping and everybody have bought into the mission to provide good HIV care for children, women, their partners and their families. And I think everybody does the best they can to make that happen.”

Do you feel that a substantial amount of progress has been made?

“Oh yeah! I mean, HIV is a deadly disease. We now have about 2,600 people—I’d say 90 percent—of those over 25 adhere wonderfully to their medicines and are doing great. A small percentage need a lot more help to take their medicine and keep doing well. The younger people, who have had the disease longer because most of them were born with it, have sometimes become resistant to some of the medicine. So, we have to put them on more complicated regimens.

Some of the good medicines we have in this country are not readily available there. When I first started that was true. Then for a while, the medicines we had in Rwanda and the medicines we had in the U.S. were the same. Now the U.S. is way, way passed Rwanda and a lot of countries in Africa and Latin America. They don’t have the medicines we have, which are really excellent medications. So, that’s a problem, but there is generally progress. I watched, at this ‘Day of the African Child,’ I watched kids who I knew when they were 10 who are now 21 years of age, and they’re confident, they’re strong, they’re going to university—it’s amazing! It’s an enormous amount of progress!”

Was the genocide the main reason why you chose to work in Rwanda?

“It was more HIV, but in the context of the genocide. I had an interest in intimate partner violence because I had seen a lot of that in the care I gave women in Chicago who were HIV infected. We’ve done studies, and there’s just high prevalence of gender-based violence, like 62 percent lifetime—here [in the U.S.]—experience with either sexual, physical, or emotional abuse. Then, we looked at it in Rwanda, in our clinic, post-genocide, and it was 62 percent also. It was the same in both countries—you know poor population, difficult situation of sexually transmitted disease where people go off to try to make a living somewhere else… In the U.S. there was lot of drug use and a lot of difficult relationships with partners. There had been issues [in Rwanda]—people had lost partners during the genocide, people had been raped during the genocide. I was interested in Rwanda because my friend had been here and we had been asked to go, but I thought that because of everything that I had learned related to women with HIV and their experiences, it would be useful in this ultimate experience of gender-based violence, which was the genocide, where about a quarter of a million women were raped. So it was sort of both things.”

What do you think the main difference is between the government in Rwanda and in a country like Zimbabwe, which has seen a lot of resistance to NGOs that are trying to come into the country trying to help people with HIV?

“I think Rwanda sort of benefited post-genocide and by the 2001-2003 people coming in. A lot of Western and European countries that felt so guilty of not helping during the genocide were now giving lots of money. At the same time, there was lots of money going into HIV in a lot of countries, but the difference was that . . . there was money straight to the government and there was NGOs’ money, but what Rwanda did—very importantly—was it controlled the NGOs a lot, or tried to. There was a very strong government presence… very strong. One can’t write anything related to Rwanda without mentioning how wonderful the Rwandan government is. One can’t really be there without somehow being acknowledged by or understand the relationship with the Rwandan government, but its not just that; It’s that there was a lot of government will in Rwanda to do well in terms of the HIV epidemic, and in some sense, I think they wanted to be a poster-child for being able to distribute medicines well and lower the prevalence as opposed to be known for the genocide. It was a way to sort of make history—current history—much more positive as a country. And they were one of the best at utilizing the many millions of dollars that were given to them to help with the HIV epidemic. I think it was disproportionately more than what other countries got, but they utilized it extremely well. The other countries who maybe should have gotten more never used it well, often. There wasn’t the same governmental will, which I think you need.

It’s not just an issue of, are the NGOs disorganized? are they sort of stepping all over each other? and are they not doing what’s right? There are those issues, which I did see a bit in Rwanda and I had seen in a lot of other countries, but what I didn’t see in Rwanda was a government that wasn’t taking the epidemic seriously. They really put energy and resources… they used the resources they got to have a very strong public health system which helped HIV and other things along the way. It really addressed maternal mortality, infant mortality… When I started in Rwanda there were 30 doctors for 10 million people, and now there are so many more physicians and nurses who are trained related to HIV. And I think it’s an issue not just of the government’s relationship to NGOs, but of the government itself, having a strong presence related to the problems that the society is facing. I think that’s different from Zimbabwe and other countries.”

What do you think is lacking in terms of support for NGOs that do the same work that you do?

“Well, we have to do a lot of fundraising and I mean that is hard . . . that is one of our issues and it is a lot of work to raise money. I think what we do is really deliver the product we say we’re going to deliver, and I think that’s why we’ve been successful so far in our fundraising. We’ve been sustained for 11 years, so that speaks to our success in itself.

What I think we did that was good is that right now in Rwanda there is a local NGO called WE-ACT for Hope. It’s all Rwandan-run and they now manage the entire clinic, so our job is to fundraise a certain amount that we commit to, along with a few other groups that they get money from, and we do a lot of guidance related to program and other things, research… but they’re responsible—they are running the show. I think if you have local folks running the show, not just in a body, but rather the responsibility of a true locally credentialed NGO, which is also what Rwanda encourages, that’s a good way to go!”

Jaime Longoria

Sources: Mother Jones, WE ACTx
Photo: WE ACT