By Bennett H. Klein
Is HIV the same as other diseases? Or do people with HIV still experience discrimination so profound that we must take it into account when creating laws and policies to combat the epidemic? Those questions are at the root of the current discussion about Massachusettsí HIV testing and privacy law, which requires written consent for HIV testing and also for the disclosure of a patientís HIV status by a health care provider.
Perhaps we should ask the 16-year-old Massachusetts girl I recently represented. A hospital employee disclosed her HIV status to the nanny for whom she worked in a close-knit immigrant community. That community so stigmatized HIV that they shunned the girl and her mother and they had to move away.
Maybe we should talk to the folks I represent at a group home for people with HIV. Their neighbors opposed their presence and circulated a petition stating that the town is ďa family neighborhood with children and a facility like that is not wanted [there].Ē They are still engaged in a lawsuit against a town that does not want them. None of these people would tell you that HIV is just like heart disease or cancer.
Empirical data confirms that the stigma associated with HIV is hardly a relic of the past. In the 2009 Massachusetts HIV Stigma Project Study conducted by UMASS Medical School and Harvard Law School, 57 percent of respondents said that concerns about discrimination affected their decision to be tested, 30 percent had faced stigma in the health care context, and 63 percent agreed that many people think "you got what you deserve'' if you have HIV. The study concluded that "stigma continues to affect decisions concerning testing, disclosure, and access to treatment.''
All of us share the urgent goal of reducing the number of people who are missing the benefits of early life-saving treatment because they have not come forward for testing and care. This year, many AIDS service organizations and groups that protect the rights of people with HIV supported a bill in the Legislature that would streamline HIV testing by replacing written consent with verbal consent.
The bill would also implement concrete policies to ensure that more people are tested and maintain the current requirement that health care providers must have a patientís written permission to disclose HIV status by clarifying and modernizing the language used in the original law.
We expected doctors to be pleased with this bill. Because their most common complaint in this debate has been that written consent for HIV testing creates too much administrative paperwork, we compromised; the bill eliminates that piece of paper. But the most surprising and frankly puzzling part of the doctorsí opposition to the bill is their attack on privacy protections for people with HIV.
We absolutely will undermine our ability to fight the epidemic if we gut our privacy law. I consistently hear from people with HIV that they are acutely fearful of where their HIV-related medical information is, who has access to it, and what could happen to it.
Given that stigma and fear are still overwhelming, assuring people that they control the dissemination of an HIV diagnosis is essential to the goal of encouraging people to come forward for testing and medical care. It is simply not true that the law interferes with patient treatment by preventing a doctor from disclosing a patientís HIV status or medications to other providers; doctors simply need the patientís written permission in order to do so.
This heightened standard is not unique to HIV (or even to Massachusetts). We have similar laws for other areas of sensitive medical information, such as genetic testing, because general laws are not sufficiently protective.
Massachusetts is a national leader in lowering HIV infections. Our privacy protections have been essential to that record.
Bennett H. Klein is senior attorney and AIDS law project director at Gay & Lesbian Advocates & Defenders.