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HIV Activists Tell New York Department of Health to Stop Gutting Informed Consent Laws

Demand takes aim at permanent changes advocated by NYC Health Commissioner Thomas Frieden.

HIV activists demanded today that the New York State Department of Health stop illegally collecting medical information on people with HIV and stop its illegal end run around New York law requiring informed consent for HIV testing.

The HIV Law Project, the New York Civil Liberties Union, the American Civil Liberties Union and South Brooklyn Legal Services presented the demand in a letter that the organizations sent to the New York Department of Health.

"The state clearly has a responsibility to protect against the spread of HIV, but that doesn't put it above the law," said Cynthia Knox, Deputy Executive Director of the HIV Law Project. "The Department of Health has used the false threat of an emergency to undercut laws that were put in place to protect medical privacy and allow people to make informed decisions about their treatment."

According to the letter, since the Department of Health announced that it had identified a so-called "super bug" infection on February 12, 2005, it has repeatedly overstepped its authority by requiring mandatory reporting of individual medical data regarding HIV care and treatment to the Department of Health. This change is in violation of state law, which guarantees greater medical privacy. Rather than permitting public debate about whether mandatory reporting of this data will actually help patients or aid in preventing the spread of the disease, the state has illegally sidestepped the required rulemaking process by repeatedly reissuing on an "emergency" basis these regulations requiring the reporting of private medical information well beyond what the law authorizes.

In addition, the state has gutted important laws mandating that patients be tested only after giving informed consent, both by removing the requirement that test administrators instruct patients of their rights when they ask for consent and by significantly changing the consent form. While the original form made it clear that the patient was consenting to a single HIV test, the new form tries to serve as a "one time for all time" consent that would authorize all subsequent HIV-related testing without any further notice to the patient.

More than two months after the Department announced that it had identified a so-called "super bug" infection, it filed a notice with the state on April 25, 2005, claiming that emergency circumstances called for changes in public health policy. Since it initially asked for the emergency policy changes, the Department has extended the emergency regulations four times: July 21, 2005, October 19, 2005, January 17, 2006, and April 18, 2006.

"Even if the ‘super bug' scare had warranted the initial emergency regulations, there has been plenty of time to hold an open debate on the merits of the changes, and that hasn't happened," said Elisabeth Benjamin, Reproductive Rights Project Director of the New York Civil Liberties Union. "The Department is playing fast and loose with the law to illegally collect medical information and keep people in the dark about their medical treatment. HIV is still a very scary disease. People deserve education and counseling to help them cope with such a life changing diagnosis."

The letter threatens the Department of Health with a lawsuit unless it changes the policies.

While the emergency policies have been in effect, New York City Health Commissioner Thomas Frieden has been advocating for permanent changes in New York law, claiming that the informed consent requirements discourage people from getting testing. Frieden claims that the changes are necessary because of the high percentage of people who don't know their HIV status, yet he offers only anecdotal evidence that written informed consent and counseling are the real barriers that prevent people from getting tested.

HIV advocates agree that the increased prevalence of HIV in communities of color is of great concern. However, they say, it is wrong to strip individuals who have too often received substandard health care at the hands of both public and private agencies – particularly people of color and people with lower incomes and people with limited English proficiency – of their ability to receive HIV education and to make informed decisions about the tests performed on them.

"Twenty-five years into this epidemic, people with HIV/AIDS continue to be fired from their jobs, kicked out of their homes and refused medical treatment," said Sharon McGowan, a staff attorney with the ACLU AIDS Project. "If the government wants to do something to get people tested, it should improve access to quality health care and make efforts to end the discrimination, not take away their ability to make educated decisions."

Just last month, Public Advocate Betsy Gotbaum released a survey finding gross inadequacies at the city's ten clinics that treat sexually transmitted diseases including HIV. The survey found that four of the clinics were unable to assist Spanish-speaking callers, services were not available at all at the East Harlem clinic, and rapid HIV testing was unavailable at two of the clinics.

Additional information about the survey is available at STDReport42806.html. A copy of the letter sent to the Department of Health is available at or

A flyer further explaining why Commissioner Frieden's proposed policy changes are wrong is available at asset_upload_file662_24735.pdf (requires the free Adobe Reader).

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