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Advocates, doctors split on HIV-test bill

Privacy, health issues thwart legislators

By Kay Lazar
Globe Staff / September 20, 2011

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A proposal to change how people give consent for HIV tests has divided AIDS advocacy groups in Massachusetts and upset major medical organizations, stymieing legislators trying to bring the state into compliance with federal recommendations aimed at promoting more testing.

At issue is a bill that would drop Massachusetts’ requirement for specific written patient consent before a doctor tests for the AIDS virus - something 48 other states have done - and replace that with verbal consent. The measure would also require the physician note in the medical record the patient’s decision.

The bill was crafted to bring Massachusetts in line with federal health officials’ 2006 recommendation that states update their laws to make HIV testing more routine and widespread. They suggested that general consent for medical care, which is the permission required for tests such as cholesterol screenings, should be considered sufficient for HIV testing.

Only Massachusetts and Nebraska still require specific written consent for HIV testing, according to the National HIV/AIDS Clinicians’ Consultation Center at the University of California, San Francisco.

Legislators this year, to accommodate concerns of some AIDS groups and others, added a provision to the bill to enhance patient privacy protections. It would prohibit health care providers from disclosing a patient’s HIV-related medical information to outside health care providers without each time obtaining the patient’s written informed consent.

That change is intended to ease patient concerns about test results being leaked. The language went too far, however, for other organizations, which originally supported the bill but now oppose it. A coalition of health care groups blasted that proposal last week, saying it would greatly hinder HIV patients’ ability to get timely medical attention.

The coalition, which includes the Massachusetts Medical Society,, the Massachusetts Hospital Association, and Fenway Health , which specializes in AIDS care, urged lawmakers and top health officials in the Patrick administration to block the legislation.

“I am not at all giving up, but I think we need to put all the same people in the same room and get them to talk to each other,’’ said Senator Patricia Jehlen, a Somerville Democrat who filed this year’s legislation. The bill has had a public hearing, been approved by two legislative committees,, and is awaiting a vote in the Senate.

Roughly 500 Massachusetts residents are diagnosed with HIV each year, while an estimated 21 percent of people infected with the virus do not know they are infected, according to state health data.

All sides in the HIV-testing debate say these numbers underscore the urgent need to make testing more accessible and patient-friendly.

After that point, common ground is tough to find.

“Each time we share information we would have to have written informed consent . . . and each step we put in the way puts more impediments to getting tested,’’ said Dr. Stephen Boswell, president and chief executive of Fenway Health.

Dr. Howard Heller, president of the Massachusetts Infectious Disease Society, and chief of medicine at the Massachusetts Institute of Technology, said the legislation would mean that each time he referred an HIV patient to a different specialist outside of his organization, he could not tell that provider about any HIV-related medications that patient was taking, without first getting the patient’s written permission.

He said that requirement would hit hardest lower-income patients who may not have access to fax machines or other technology that would allow them to remotely send physicians their written permission and would force them to come in to sign another form.

“The entire country is going in the other direction, to make information sharing easier and more thorough,’’ said Heller, who is one of more than 100 health care providers who signed the coalition’s letter opposing the bill. “This is a step backward.’’

Heller and other providers said that requiring HIV-specific written consent made sense two decades ago, when there were no successful HIV treatments and medical confidentiality practices were weak.

But supporters of the legislation say such safeguards are still necessary to protect patients’ privacy.

“HIV is still a stigmatized condition and many people fear the disclosure of HIV status,’’ said Ben Klein, senior attorney and AIDS law project director at Gay & Lesbian Advocates & Defenders, a legal rights organization also known as GLAD.

GLAD, the ACLU of Massachusetts, and the AIDS Action Committee of Massachusetts, a nonprofit AIDS advocacy and service organization, are among the groups supporting the revised legislation.

Rebecca Haag, president and chief executive of AIDS Action, said supporters also believe the bill’s requirement that physicians note in a patient’s medical record that an HIV test has been offered is critical. Some physicians have balked at this provision, saying caregivers are already too swamped to take on more administrative tasks.

“It is a moment in time when the physician can interact with the patient and help with new infections,’’ Haag said. “A patient may be engaging in risky behavior, and if they explained it to them and got them into care, it’s an opportunity to prevent the disease.’’

Supporters say the requirement is especially important for primary-care providers who may not be as prone as infectious disease specialists to consider routine HIV testing for patients thought to be at higher risk for infection, including gay and bisexual men, and black and Hispanic patients.

Kay Lazar can be reached at klazar@globe.com. Follow her on Twitter @GlobeKayLazar.