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When HIV privacy goes too far

Posted by Ishani Ganguli  March 9, 2012 07:00 AM

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The morning after she was raped, Sarah* went to her local emergency department (ED) to get herself checked out. Thankfully, she had suffered no physical injuries. She got the usual slew of tests and was sent home with a bottle of HIV pills and a recommendation to see her primary care doctor. 

Sarah came to her appointment with me three days later. We didn’t have access to her prior records, so Sarah had to call the ED and have them sent. In the meantime, I gave her a refill of the HIV medication – a standard safeguard against the small but devastating chance that her attacker had been infected with HIV and transmitted it to her. When her medical records finally arrived days later, one test result was conspicuously missing: the one for HIV.

I left messages with the social worker who had helped to take care of Sarah in the ED. When I finally reached the social worker, almost two weeks later, her voice was guarded. “About that test, it’s a really charged topic,” she told me. “I’m sorry, I can’t even tell you if we did it.” Sarah would have to get a special consent form and fax it to the local hospital in order for us to see the result. 

This, when we have enough trouble with decentralized medical records and with getting HIV positive patients the care they need and deserve. 

Last week, the Massachusetts Senate passed a bill repealing required written consent for HIV testing. If the House passes it as well, the bill will make Massachusetts one of the last states in the country to comply with 2006 CDC guidelines for universal, opt-out testing. But despite vigorous efforts by physician lobbyists, the bill makes no change to the 1986 language that bans any sharing or release of HIV test information - even between physicians, and on electronic health records - without a patient’s explicit written consent each and every time.

Back in 1986, the original law made sense: When HIV emerged in the United States in the 1980s, AIDS activist groups fought for strict protection of their autonomy in the testing process, arguing that already marginalized populations would be coerced into getting tested, risking discrimination and the psychological burden of a fatal illness with no cure. 

In the legislative battle that produced the current Massachusetts bill, organizations including GLAD (Gay & Lesbian Advocates & Defenders) argued similarly against easing the written consent requirement for sharing of HIV test results, saying that strict privacy protections are responsible for the decline in spread of HIV. 

But times have changed. Now that effective treatment has turned HIV/AIDS into a survivable chronic illness and we have strict privacy rules for all patient information, so-called HIV exceptionalism is outdated and stifles care. 

The law is impossibly restrictive in its most literal interpretation (does the patient have to sign a form when a lab technician transmits a test result to a physician?). In practice, every institution and health care worker interprets it differently. Tellingly, the law has never been tested in court. But as Sarah and I discovered, the specter of its consequences is enough to impede good care, while its haphazard implementation precludes any of the privacy assurances that its supporters cite to defend it. 

We doctors can’t do our jobs without full knowledge of our patients’ conditions and their prescriptions, says Rochelle Walensky, MD, MPH, my research mentor and one of the infectious disease doctors who have been lobbying the state legislature on this issue. 

As for Sarah, in the weeks it has taken to track down her test results, delayed knowledge of her diagnosis has led to potentially unnecessary use of a drug with side effects. It has wasted her time and caused her undue stress. Sarah shared my frustrations: Hasn’t she been through enough already? 

With so many other barriers to good HIV/AIDS care, our energy should be spent not on micro-managing caregivers’ access to medical information but in diagnosing patients and getting them life-saving treatment. 

*Name changed to protect the patient’s identity
This blog is not written or edited by or the Boston Globe.
The author is solely responsible for the content.

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About the author

Ishani Ganguli, MD, is a journalist and a second-year resident physician in internal medicine/primary care at Massachusetts General Hospital. She studied biochemistry and Spanish at Harvard College and received her More »

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