GAZETTE: Why were the cases so complex?
VANROOYEN: Most fistulas occur because of obstructed labor, when women have tears that are not repaired or repaired appropriately. That can be the case here. But a lot of them had to do with sexual slavery. Women were abducted and then subjected to very violent forms of sexual abuse, including instrumentation, shooting in the pelvis, using sticks and roots and terrible stuff.
Panzi Hospital was the only place in the region set up to take care of these women, and Denis had very specialized expertise. Not only do these women need high-level operating rooms and anesthesiologists, but they need surgeons who can handle the most complicated pelvic trauma.
The social consequences were huge. When the women would return after this horrific treatment, they literally would leak all the time. So they were cast out of their homes and their families would make them sleep outside the house. So not only did they suffer this horrible injustice and abuse, but they were then ostracized from their community.
GAZETTE: How much research did you do in the eastern DRC and at Panzi?
VANROOYEN: We had a whole team that studied gender and conflict that did a ton of work at Panzi Hospital and in the region. The work sought to understand questions like: What was the distribution of women who were abducted? What were the dynamics? How were they perceived by health care providers? How were they worked back into the community? What were the barriers?
We did everything from understanding physical implications and rehabilitation all the way to understanding community dynamics of acceptance and rehabilitation and psychosocial trauma. We must have published 20 papers over the course of several years, with Denis and his team.
GAZETTE: Did any of the work help women reintegrate?
VANROOYEN: This was one of the times that we really decided that our primary motive was not writing a paper. Our primary motive was to drive policy changes and funding so they could get more resources at Panzi and more resources around community support, social support, transportation back and forth from the hospital, etc. So we were very active in the policy and advocacy fronts, based on that relationship with Panzi.
GAZETTE: Why shift from pure research to policy and advocacy? Because of the nature of the problem?
VANROOYEN: I’ve always felt — and this played out very starkly in this circumstance — that it is unethical to do research on very vulnerable populations without having a direct programmatic component that feeds back to them. In other words, these women were so vulnerable and so affected by the war that we felt the ethical responsibility was, if we were going to do research, to turn it into concrete policy change for these women.
GAZETTE: What can you tell me about your relationship with Denis?
VANROOYEN: We had recurrent visits to Panzi and visited Denis and his family. He’s a very warm, wonderful guy, so when we went to the Congo, we’d have dinner with Denis’ family. Then, when he would come here on a speaking trip — we hosted him here for a lecture series — he would come to dinner at our house and stay with us.
At one point, he had an assassination attempt on his life and he had to leave the country quickly and he came to Boston. We spent a lot of time with him then. So we got to know him and his wife and daughters well.
GAZETTE: Were there things that you learned from him personally?
VANROOYEN: He’s a great inspiration for a lot of people — many, many thousands of people — because of his work. I’ve always admired the people in global health and humanitarian aid who do the hard work in the field day in and day out. And Denis’ motive is not recognition. As a matter of fact, he’s probably uncomfortable with the recognition, but he uses it to get the mission, the voice of these women, through to a larger audience. And he’s clear about that.
So the thing that is really inspirational about him is just his absolute unwavering dedication to a cause that is important — he risks his life for it, literally. His entire pursuit is to advance the rights and the health of women affected in the Congo.