“We’ve heard that outside of Haiti, there’s a cure,” she said. “When is it going to come here?”
I was sitting in the offices of a community-based HIV organization in Cap Haitien, Haiti, interviewing a young woman living with HIV. I work in many countries across the region, but Haiti had been difficult to reach given infrastructure and language challenges. So I decided to visit directly with communities affected by HIV. I had asked the woman if she had any questions for me, but this stopped me cold.
It was the hardest answer I had to give on this trip. Misinformation is still all too common: there is no cure for HIV.
Unfortunately, this isn’t just a problem in Haiti. To collect a record of experiences like those I confronted in Cap Haitien, the International Treatment Preparedness Coalition conducted a global survey of 760 people living with HIV and 130 medical service providers in 16 countries. The findings informed our report, Global Policy, Local Disconnects: A Look Into the Implementation of the 2013 Treatment Guidelines.
We found that across the world, global and national treatment guidelines do not translate into the realities of life for most people living with HIV.
But misinformation wasn’t the only experience the women in Cap Haitien have in common. The women and their families had moved there from more rural areas due to the stigma and discrimination they experienced after their HIV diagnosis became public.
One woman who had made a living selling cereal, milk, and other products at the local market watched as news of her diagnosis spread and her customers stopped coming. Being forced to move and find new work created interruptions in their treatment.
Most of the women also perceived treatment as more of a defense than an opportunity. All reflexively said that the reason they took treatment is “because, if not, we’ll die.” They viewed treatment as merely a necessity for survival. None understood that treatment has other benefits, like making it difficult to transmit HIV to a sexual partner.
Women who take an active role in their treatment decisions may be more likely to adhere to their drug regimens, and therefore less likely to develop drug resistance. This kind of empowerment can prevent people living with HIV from feeling as though their disease dictates their whole life. Unlike the women of Cap Haitien, they can understand they have some control when it comes to their health.
From Haiti to Vietnam, people living with HIV lack access to basic knowledge about how HIV treatment works. Although the ambitious treatment guidelines released in 2013 by the World Health Organization call for earlier treatment in order to scale up, how can we achieve this if women, men, and children do not have basic treatment literacy?
Solving these problems requires a shift in approach that places local communities at the center. Grassroots treatment education must be expanded, and communities themselves should participate in the design, delivery, and monitoring of HIV services in order to ensure services meet their specific needs.
Only then can the women of Cap Haitien expect more than misinformation and marginalization.