Both women said they were held up to a very different standard than the men in the study. It all seemed to revolve around the researcher company s obsessive fear that they not be pregnant or get pregnant during the course of the trial. While the plight of the African American community has moved to the front lines and now headlines the national media, the hemophilia community has slipped from view. The statistics of infected female partners of men with bleeding disorders are not showing up on the demographics radar. I think for the most part, the women in the hemophilia community who are infected are still very closeted.
Confidentiality is a huge issue.
We are talking about a community where HIV ruined a lot of relationships, she said. The issues of discrimination and stigmatization are deep for the men who, Taton said, were treated like they were developmentally disabled because of their special physical needs as children. They have tried so hard to overcompensate and be normal, said Gerus-Darbison, that they wouldn t disclose. This put many wives and partners at risk because the men did not want to draw attention to their hemophilia by discussing the risks of HIV infection. Now there are laws around this issue of notification of sexual partners, said Gerus-Darbison, but that was a contentious issue when she first got involved.