14
Oct
09

Proposed legislation to end written consent for HIV testing in Mass. sparks controversy

Two bills pending in the Massachusetts Senate that would eliminate informed, written consent before administering HIV tests continue to stir debate. Supporters say the proposed legislation would increase the chances of treating the virus in its early stages. Opponents, on the other hand, maintain written consent is crucial in building trust between doctor and patient.

The Centers for Disease Control issued a non-binding recommendation in 2006 that written consent for HIV testing is no longer needed. The CDC concluded general consent for medical care should be considered sufficient.

Only eight states currently still require written consent before a patient undergoes an HIV test. Besides Massachusetts, they are Alabama, Michigan, Nebraska, New York, Pennsylvania, Rhode Island and Wisconsin.

The Massachusetts bills, sponsored by state Sens. Patricia Jehlen and Robert O’Leary, both Democrats, would replace written consent with requirements health care providers verbally discuss the test, outline treatment options if it comes back positive, recommend patients who test negative but remain at-risk undergo periodic testing in the future and advise them they have the right to decline the test.

O’Leary’s bill also would require the state’s Department of Public Health to undertake a study on how to best reach those who are at increased risk for contracting the HIV virus, but are not getting tested.

In making the case for eliminating written consent, Jehlen’s office reported 20 percent of Massachusetts residents with HIV/AIDS are unaware of their status because they have not been tested. It also
referenced the fact HIV testing rates at San Francisco General Hospital rose by 44 percent after administrators eliminated its written consent regulation. The number of positive test results increased by 67 percent.

The Boston Globe recently endorsed the proposed legislation in an editorial. And many healthcare providers and activist organizations support it. They include Gary Daffin, executive director of the Multicultural AIDS Coalition.

Fenway Health, a Boston-based provider that treats LGBTs and has been at the forefront of HIV/AIDS treatment and prevention since the early days of the epdemic, also maintains believes it is time to end what many believe is an outmoded policy.

“We’re very supportive of moving in this direction,” Fenway president Dr. Stephen Boswell told EDGE in a phone interview.”The goals of the CDC are to help identify as many of the people who are HIV positive in the country, but don’t know it, as possible. Study after study has shown that the current testing paradigm for HIV is interfering with making testing readily available in some of the sites where the largest number of people who are positive, but don’t know it, are going for care.”

But some Massachusetts LGBT and HIV/AIDS service organizations remain opposed the bill. Gay & Lesbian Advocates & Defenders opposed it during a state house hearing last week. The AIDS Action Committee also remains opposed..

Bennett Klein, director of GLAD’s AIDS Law Project, testified before the Joint Committee on Public Health on Oct. 6 he feels written consent provides important protections to those HIV/AIDS. He further argued there is no evidence to suggest it is a barrier to people getting tested.

“Solving this problem requires a comprehensive public health solution, including determining how to reach populations, such as the homeless or immigrants, who may not make contact with the traditional healthcare system,” Klein told the panel. “If we could solve a difficult social and public health problem by simply getting rid of a piece of paper, we would be very lucky. But that is not the case.”

In a phone interview, Klein further contended the bills leave open the possibility some people will be tested without knowing it or without believing the test was voluntary and that they were in control of the situation.

“There are also larger repercussions in terms of the public response to the epidemic, such as creating a sound and trusting relationship between provider and patient, and patients being able to talk frankly about risk behaviors,” he explained. “This is particularly important in adherence to medication. If people are distrustful of the healthcare system, you are much less likely to ensure that there is a patient-provider relationship that can address those issues.”

The AAC told EDGE in a statement that while it welcomes efforts to eliminate barriers to HIV testing and supports the goals of the proposed legislation, it cannot endorse the bills as they currently are written.

The organization said it could support proposals that required documentation of verbal informed consent and imposed enforceable penalties for failure to document consent and for violations of patient confidentiality.

AIDS Action further called for a statute to require a funded study of the reasons people with HIV often enter treatment late and to propose solutions.

“Because written informed consent is perceived to be a barrier to testing in medical settings, moving to verbal consent with appropriate documentation and confidentiality protections can be an important first step toward increasing the number of HIV tests offered and ensuring routine HIV testing in medical settings,” the statement read.

The organization added it feels the full integration of routine HIV testing in medical practices will help reduce the stigma still associated with the virus because of its association with sex and drug habits.

“HIV/AIDS disproportionately impacts gay men and women of color,” AIDS Action said. “People at risk for HIV should not have to seek out extra services or special sources of care to be screened for a medical condition that disproportionately impacts them. HIV screening and testing should be available everywhere in the Commonwealth.”

The Massachusetts Department of Public Health has not taken a position on the legislation, but it noted in a statement it has long supported routine screening.

Among its initiatives are pilot routine screening projects in urban areas, a public information campaign promoting knowledge of HIV status and guidance to providers about how to reduce the administrative burden of obtaining consent under current law.

“We are invested in reducing barriers to HIV screening for both patients and providers while preserving the strict confidentiality of individual medical information,” Kevin Cranston, director of the agency’s Bureau of Infectious Disease, said.

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