Privacy Disputes Threaten Mass. HIV Testing Bill
By BOB SALSBERG
BOSTON – Emerson Miller felt “pretty hopeless” when he tested positive for HIV in 1996, but has since come to appreciate the importance of receiving an early diagnosis of the disease.
Today, the Boston resident takes four pills a day and sees a doctor every three months. And though he has since developed AIDS, 15 years later he still considers himself fortunate.
“I’m as healthy as any other 48-year-old at the moment,” said Miller, who, as a program manager for the AIDS Action Committee, encourages others to be tested regularly.
Doctors, patients and advocates all agree that a prompt diagnosis speeds the delivery of treatment and helps prevent the spread of HIV to others. But Massachusetts legislation aimed at expanding HIV testing has bogged down amid disputes over what constitutes a person’s consent for such testing and how easily the medical community can share information about patients with HIV.
The Massachusetts Medical Society, which represents health care providers, has warned lawmakers and state health officials that the consent and privacy language in the bill could do HIV patients more harm than good.
Massachusetts and Nebraska are the only states that have not fully adopted the 2006 guidelines of the federal Centers for Disease Control and Prevention, which call for routine HIV testing. The CDC recommends screening for all patients ages 13-64 part of routine care in health care settings, with more frequent testing of those at higher risk, such as drug users or people with multiple sex partners.
Massachusetts law, however, states that no doctor or health care provider can test for HIV or release information about results without first obtaining “written informed consent” of the person being tested. The CDC specifically recommends against a separate consent form for HIV testing, suggesting that it simply be incorporated into a general consent that patients would give for any type of diagnostic test.
The bill, which has been endorsed by the Legislature’s Public Health Committee, eliminates the requirement for written informed consent for an HIV test but replaces it with “verbal informed consent,” including a provision that the consent be immediately noted in a patient’s medical records.
The measure would also impose strict limits on disclosure or sharing of any HIV-related medical information between health care providers without written consent by the patient, because of what backers say is a need to protect the privacy of patients.
Dr. Lynda Young, president of the medical society, said even with elimination of written consent for testing, the bill’s requirements go too far and would only place more roadblocks in the way of routine HIV testing.
“A general medical consent form should suffice,” she said. “Verbal consent that is specific for one kind of testing, no matter what that testing is … doesn’t need to happen.”
Massachusetts advocates for the tougher privacy rules disagree, saying that the disease still carries a stigma and that many patients fear disclosure may cost them their jobs, homes or health insurance.
“I think we all share the goal of expanded testing,” said Rebecca Haag, executive director of the Boston-based AIDS Action Committee. She acknowledged the concerns of doctors and other public health experts that written consent- as the present state law requires- can add to the anxiety of many people over testing.
To that end, Haag has proposed a compromise. She wrote to lawmakers this week, asking that they consider eliminating the disclosure and information sharing provisions of the bill.
Doctor who oppose the bill believe HIV should be treated as any disease under existing medical privacy laws, and fear that giving it special status could invite lawsuits and slow the transition to electronic medical records.
“Right now we have systems in place that protect patients’ confidentiality,” said Dr. Stephen Boswell, president of Fenway Health, which offers health care services to Boston’s gay and lesbian community.
“They are very significant and far-reaching rules that govern who we can talk to, how we can talk to them, when we need their permission, how we have to get permission. All of those things have been dealt with in a universal fashion around medical care,” he said.
As an example, Boswell said if the bill were adopted, he might not be able to tell a doctor performing a colonoscopy at another facility what type of medication an HIV patient was taking.
Sen. Patricia Jehlen, co-chair of the Public Health Committee, expressed frustration at the inability to reach a consensus on the bill and bring Massachusetts into compliance with the CDC guidelines. She indicated a willingness to consider Haag’s suggestion for a scaled-down bill, but questioned whether doctors would embrace it because it sill contained the provision for verbal informed consent.
“I will take progress over stalemate,” said Jehlen.
Young said the medical society would be willing to discuss changes with AIDS Action, but added that doctors remain strongly opposed to the bill and would prefer to simply have the current law repealed.
The Massachusetts Department of Public Health estimates between 25,000 and 27,000 people currently live with HIV or AIDS in the state. It’s believed that about one in five of those people are unaware they have HIV and without testing, may not learn of their status until they develop full-blown AIDS.
People with undiagnosed HIV often continue to infect others and cannot benefit from the variety of drugs shown to slow down or stop the progression to AIDS, experts say.