Living with the stigma of HIV: Many in state hide their status

By Deborah Kotz, Globe Staff

WASHINGTON, DC -- Attending the packed meetings of the 2012 International AIDS Conference, it’s hard to believe anyone hides their HIV status anymore. In a session on countries like the US that have made HIV nondisclosure to partners a criminal offense, one woman stood up and announced that when she was diagnosed, “it never crossed my mind for a second to prosecute the man who gave it to me.” A gay videographer from Provincetown introduced himself with a handshake, his name, and a declaration that he’s had AIDS since 1987.

But thousands of HIV positive individuals live in a shadow world, unwilling or unable to go public with their infections because they fear losing their jobs, their friends, or the person who just bought them a drink at a bar.

More than one in five Massacusetts residents living with HIV report that they “work hard” to keep their infection status a secret from everyone, and nearly half said that they haven’t revealed their status to anyone outside of their immediate family, according to a 2009 study of conducted by Harvard Law School’s Health Law and Policy Clinic.

The stigma that still surrounds the disease “can affect behavior, including delayed HIV testing, putting off needed care, and not disclosing status to medical providers,” write the study authors.

Myths still abound about how HIV spreads such as it can be transmitted on plates of food, toilet seats, or a spray of saliva. (It only spreads through blood or sexual intercourse.)

As a result, many people would prefer to avoid those with the virus. A 2011 Kaiser Family Foundation survey of nearly 2,600 Americans found that 18 percent of respondents wouldn’t feel comfortable working with someone who had HIV, and nearly 30 percent wouldn’t want their child to have a teacher who was HIV positive. (An HIV-positive boy in Hershey, Pa. was recently denied admission to a boarding school due to his infection.) Close to half of the survey respondents also said they wouldn’t want their food prepared by someone who carried the virus.

“People are going underground more with their HIV status,” said Rebecca Haag, president of the AIDS Action Committee of Massachusetts. “Some who used to be active in our organization are pulling away; they tell me they don’t want that to be their primary label on the job or when they’re dating someone new.”

Of the state’s 26,000 to 28,000 residents estimated to be infected with HIV, about 15 to 18 percent don’t know they’re carriers, according to Haag, which is lower than the 25 percent nationwide who aren’t aware of their HIV status. The state also implemented a new law this week that removes the requirement of specific written consent for HIV testing, allowing patients to provide just their verbal consents.

“We pushed for this law to try to normalize testing for HIV,” said Haag, “to allow doctors to offer it without any judgements” and for patients to not feel stigma surrounding the test itself. The federal Centers for Disease Control and Prevention has recommended for years that doctors stop using separate consent forms for HIV testing, and Massachusetts was one of the last remaining states to require such documentation.

Beyond separate consent forms, more than 30 states -- though not Massachusetts -- have laws on the books making it a specific crime for those infected with HIV to hide their status from their sexual partners. Some people have been prosecuted and sent to jail for not disclosing their status even if they have no signs of virus in their blood, thanks to treatments, and haven’t transmitted the infection to anyone.

“The laws aren’t based on the science of transmission, and disclosure is very difficult to prove,” said Brook Kelly, an HIV human rights attorney for the US Positive Women’s Network, during a presentation at the AIDS conference. “While the laws were supposedly designed to protect women, they’ve been used as tools of coercion to force women to stay in abusive relationships with partners threatening to report them to the police if they leave.”

AIDS experts point out that the goal of getting to “zero infections and zero deaths” will never be reached until everyone is tested and treated for the virus. “The rationale has been that if we can normalize testing – and make HIV into a chronic disease rather than a death sentence -- we can reduce stigma,” said Dianne Rausch, a psychologist at the National Institute of Mental Health in her remarks at the AIDS conference. “But stigma has a negative impact on testing and getting us to universal treatment.”

Tim McCarthy, the videographer from Provincetown, pointed out that even with advances in at-home HIV testing and state-of-the-art treatments, HIV infections are surging in certain populations. “It’s incredible in this day and age that the biggest perpetrator of AIDS is the stigma.”