Bay Windows - September 27, 2007
Ethan Jacobs, ejacobs@baywindows.com

William Ryder, head of regulatory affairs for the Massachusetts Medical Society, testified in favor of the House Bill 2209, a bill to do away with the written informed consent requirement for HIV testing. The bill builds on recommendations issued by the Centers for Disease Control and Prevention (CDC) in 2006, which said that requirements around written informed consent represented a barrier to getting people tested and argued that such requirements be eliminated. Ryder said that while the medical society believes that the requirements around written consent may once have been warranted due to the stigma attached to HIV/AIDS and the potential legal consequences of testing positive, he believes the requirements have outlived their usefulness. He said ending the requirements around written consent will "support the normalization of HIV testing."

HIV/AIDS advocates disagreed with Ryder's testimony and argued that requiring written informed consent for HIV tests was vital to maintaining public efforts in Massachusetts. Ben Klein, an attorney for Gay and Lesbian Advocates and Defenders (GLAD) and director of GLAD's AIDS Law Project, said that abolishing the legal requirement on providers to obtain written consent opens the door to people being tested for HIV without their knowledge. "If H.2209 is passed there is no question that in Massachusetts that people will be tested for HIV without even knowing it. ... No individual should learn that they are HIV positive at the same moment they learn they've been tested," said Klein.

Denise McWilliams, AAC's director of public policy and legal affairs, said that the CDC's recommendation to do away with written consent and pre-test counciling was prompted by two factors, a finding by the CDC that written consent and pre-test counseling procedures are too time consuming for providers in emergency rooms and other health care settings, and a study cited by the CDC showing that many physicians are uncomfortable talking to their patients about sex and drugs.

AAC's health privacy bill, H. 2276, would create new regulations on how public health agencies make use of patients' personal health information. AAC filed the bill in response to the new system for HIV reporting that went into effect at the beginning of the year, which requires physicians and other providers to report to the Department of Public Health by name any patient of theirs who tests positive for HIV. Previously DPH tracked HIV cases using anonymous codes assigned to each patient rather than by patient name. The bill regulates how public health agencies can collect, store, disclose and use people's personal public health information, and it applies not only to people with HIV/AIDS but to anyone with a condition that could be reported to a public health agency.

Rebecca Haag, executive director of AAC, told the committee that the legislation will increase the public's confidence that their personal information will remain confidential, making people more willing to be tested for HIV. She said reports in the media of security breaches that have resulted in people's personal information being made public, both by public health agencies and by commercial businesses, have made people hesitant about disclosing information like their HIV status to the government.

AAC's bill requires that public health agencies receive the informed consent of patients before collecting and disclosing personally identifiable health information, and it says that such information must only be used for narrowly tailored public health purposes. It also allows members of the public to access personal health information about themselves in the possession of public health agencies and to correct any errors in that information. The bill also requires DPH to develop strict procedures for ensuring that there are no breaches that would lead to the unlawful disclosure of patients' personal health information.

The bill's lead sponsor, Rep. Marty Walsh (D-Dorchester), and one of the bill's co-sponsors, Rep. Byron Rushing (D-South End) also testified in favor of the bill. Rushing said that he supports H. 2276 but believes that it may need stronger language around protecting whistleblowers to ensure that people working within public health agencies feel secure reporting potential violations of the law.

No one testified against H. 2276 during the hearing.

A handful of other bills would do away entirely with consent requirements for HIV tests in certain extreme cases. One bill would require HIV testing of persons convicted of sexual assault and the disclosure of the test results to the victim. Another would allow a law enforcement or public safety official who was bitten, scratched or exposed to the bodily fluids of someone facing a criminal complaint or indictment to petition a court to mandate an HIV test of that person and to be informed of the results of that test. A third bill would give anyone who came in contact with the blood of someone who may be infected the legal right to compel that person to be tested, regardless of whether or not they give consent. The results of that test would be shared with the person who believes they may have been exposed.

Darrell Demers, an EMT from Fitchburg, testified in favor of the latter bill, which was filed by Rep. Stephen DiNatale (D-Fitchburg). DiNatale told the committee he had refiled the bill, which had originally been filed by his predecessor, Emile Goguen, a longtime opponent of LGBT rights.

Demers told the committee that while extracting a patient from a vehicle after a car crash one of his gloves was punctured and his hand was sliced open, exposing him to the patient's blood. The patient was in a coma and could not provide consent to be tested for HIV, so Demers was placed on a post-exposure prophylaxis (PEP) regimen, a month-long course of high doses of HIV medication designed to prevent him from becoming positive if he had been exposed to the virus. Demers said the PEP regimen left him feeling ill for the entire month, comparing it to a constant hangover, and the experience has had a negative effect on his work as an EMT.

"There were plenty of times before, whenever you're the first one in there, I'd have my hand in somebody's chest. And now I think about it every time I put my hand in there," said Demers. Klein said that while he sympathizes with people in Demers's situation, he said none of the legislation to force people to take HIV tests when another person may have been exposed to their fluids would have any impact on the treatment they receive. He said the CDC recommends that people begin PEP within hours after any potential exposure to HIV, but it would take much longer than that for the person who may have been exposed to go to court and convince a judge to order someone to get an HIV test.

"The story that was related this morning wouldn't change at all if these bills passed," said Klein. He also said the CDC has never documented a case of HIV transmission to a first responder. Kevin Cranston, director of DPH's HIV/AIDS Bureau, attended the hearing. He told Bay Windows that DPH has not taken a position on any of the HIV/AIDS-related bills discussed during the hearing.

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