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Rights Groups Threaten NYS Suit Over HIV-Medical Data Collection
  by Newscenter Staff
May 15, 2006 - 3:00 pm ET
(New York City) Three civil rights groups on Monday accused the State of New York of illegally collecting medical data on people with HIV/AIDS and threatened if the practice is not stopped it will file a lawsuit.
The HIV Law Project, the New York Civil Liberties Union, the American Civil Liberties Union and South Brooklyn Legal Services accused the New York State Department of Health of making an end run around New York law requiring informed consent for HIV testing.
"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."
The threatened lawsuit was contained in a letter sent Monday to the Department of Health
According to the letter, since the Department 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, the letter says, 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 groups say, 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.
"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."
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 says 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.
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