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Stigma of HIV keeps thousands silent about their status

The retiree was sitting in a bed at South Shore Hospital last December, chatting with two visiting friends, when her physician walked into the room and declared, “I understand you have HIV.”

It was supposed to be a secret, and the patient insisted to the friends from her retirement community that she didn’t carry the virus. But they left quickly and one no longer speaks to her.

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“We used to eat together all the time. Now we never do. She just avoids me as much as she can,” said the 65-year-old woman, who wanted to remain anonymous. “My closest girlfriend doesn’t even know I have HIV. I don’t want people to shun me. I’d be alone.”

Three decades after the start of the HIV/AIDS epidemic, thousands of people like her are unwilling to disclose their condition because they fear losing their jobs, their friends, or a significant other.

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

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Early treatment of HIV infections is one of the best ways to slow the spread of the virus, but the stigma that still surrounds the disease leads people to delay HIV testing, put off needed care, or not reveal their infection status to medical providers, the authors wrote.

In the survey of 284 HIV positive people, about 30 percent said they recently had been treated badly by health care providers or felt stigmatized by doctors and support staff. Some reported their HIV status had been involuntarily disclosed.

That has happened to the South Shore Hospital patient twice. She said she had not told anyone when she was diagnosed with HIV in 1985. No one knew for 10 years, until she was admitted to South Shore with seizures caused by the HIV infection. The doctor treating the woman announced her HIV status to her mother and brother in a hospital waiting room, also without her approval.

“It was horrible,” she said, “but I guess they didn’t know better back then. At this point, they should be educated.”

Though South Shore Hospital officials would not discuss the circumstances of the incidents, they confirmed the authenticity of letters to the patient communicating the hospital’s wish to rectify the most recent privacy breach. The Globe obtained them from the nonprofit Gay & Lesbian Advocates & Defenders in Boston.

In a letter from the physician in the 2011 case, Dr. Fadi Chalhoub apologized to the patient for “any stress” that his actions may have caused her and added that he had completed “additional training in patient privacy.”

He no longer works at the hospital and did not respond to telephone messages left at the hospital in Florida at which he works and at his home.

Under federal law, providers can in some cases be fined for publicly disclosing health information without a patient’s consent, and state law specifically prohibits health care providers from disclosing patients’ HIV status without their written consent.

Last year, Massachusetts General Hospital agreed to pay $1 million to the federal government after a hospital employee lost medical records for 192 patients, including some infected with HIV. South Shore would have been required to report the HIV disclosure to the US Department of Health and Human Services. Officials would not say whether an investigation was underway.

South Shore Hospital spokesperson Sarah Darcy said in an e-mailed statement that whenever breaches of privacy occur, hospital administrators “review the factors that led to the situation and take steps to strengthen our systems and procedures.”

Lingering myths about how HIV spreads may be contributing to the stigma against those who are infected. Some people still believe the virus can be transmitted via plates of food, toilet seats, or a spray of saliva, according to the federal Centers for Disease Control and Prevention. (It spreads only through blood or sexual intercourse.) And few are aware that the latest drugs to treat HIV often make the virus undetectable in the bloodstream and, thus, far less likely to spread, even through unprotected sex.

As a result of these misconceptions, some say they would prefer to avoid people infected with the virus. A 2011 Kaiser Family Foundation survey of nearly 2,600 Americans found that 18 percent of respondents would not feel comfortable working with someone who had HIV, and nearly 30 percent would not want their child to have a teacher who was HIV positive. Close to half of the survey respondents would not want to eat food prepared by an infected individual.

HIV specialists say such attitudes are one reason some people at risk of infection do not get tested for the virus. Of the state’s 26,000 to 28,000 residents estimated to be infected with HIV, about 15 percent to 18 percent do not know they are carriers, according to Rebecca Haag, president of the AIDS Action Committee of Massachusetts. To encourage more patients to get tested, the state implemented a new law last month that removes the requirement of specific written consent for HIV testing, allowing patients to provide just verbal consent.

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

Theresa Nowlin, 49, of Dorchester said she was cut off from her mother’s side of the family after she was diagnosed with HIV more than 25 years ago. “At first they served me on paper plates with plastic forks but then they just stopped inviting me to Christmas and Thanksgiving,” she said. “They still treat me like a germ.”

The woman whose HIV status was disclosed at South Shore Hospital said a fellow resident in her retirement community who is open about being HIV-positive is referred to as “the girl with HIV” by other residents and shunned.

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

Deborah Kotz can be reached at dkotz@globe.com. Follow her on Twitter @debkotz2.
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