Sunday, August 28, 2011

Indiana using inaccurate HIV consent forms

Document misstates both medical and legal reality
By Todd A. Heywood | 08.25.11
 Mirroring a situation in this state that was fixed by the Michigan Department of Community Health, at least some counties in the state of Indiana are using consent and acknowledgment forms for those who test positive for HIV that are medically and legally inaccurate.

The documents ostensibly are designed to inform HIV-positive and Hepatitis B infected persons of their legal responsibilities under the state’s “Duty to Warn” law, but Richard Sutton, president of Indiana Equality Action, says the documents go too far.
“I am sympathetic to the goals of public heath here, but it’s just overkill,” says Sutton. He served on a school board for a community neighboring the home of Ryan White, the Indiana teenager subjected to harassment and violence when it became known he was an HIV-positive hemophiliac. He met the teenager when White and his mother were searching for a new school for him to attend, and he says the documents remind him of that time. “It feels very provincial.”
Sutton said there are a series of deeply troubling issues with the form provided to Michigan Messenger by HIV educators in the state. That document informs HIV-positive people that they are obligated to disclose their status prior to any sexual or needle sharing activity, as well as the fact they are prohibited from donating organs or body fluids, but the language misrepresents the laws.
“There are no official state forms related to a carrier’s duty to warn,” said Amy Bukarica, director of the Office of Public Affairs for the Indiana Department of Health. “The HIV Confidential Consent and the duty to warn documents are not on the Indiana State Department of Health public website.”
In short, there are 92 different counties in the state, and possibly just as many forms.
Sutton’s issues with one form being used are substantive criticisms.
First, the document focuses exclusively on HIV and does not mention Hepatitis B, a sexually transmitted and blood born viral infection linked to liver cancer and failure that is also covered under the same law.
Secondly, the document says that prohibited sexual activity without disclosure includes mutual masturbation. The law, however, was specifically written to address “contact that has been demonstrated epidemiologically to transmit a dangerous communicable disease.” There are no cases of HIV transmission as a result of mutual masturbation, and it is not considered a risk factor by the Centers for Disease Control and Prevention.
Bukarica declined to provide Michigan Messenger with any evidence of HIV transmission via mutual masturbation. “All cases reported are confidential under federal and state privacy laws,” she wrote.
But in fact, the department’s own website has comprehensive demographic information about how many people are infected, what risk category they were involved in as well as age, gender and race or ethnicity.
Third, the document indicates that HIV-positive persons, even after disclosing his or her status, are prohibited from any “contact that has been demonstrated epidemiologically to transmit a dangerous communicable disease.” That prohibition could be used to prosecute an HIV-positive mother who decides to get pregnant — even if she is on anti-retroviral treatment, which has been proven to prevent prenatal transmission. This provision would also prohibit long term monogamous partners from having unprotected intercourse, even if the infected partner is on medications. Recent studies have found that successful medication intervention can prevent transmission between serodiscordant (one HIV-positive, one HIV-negative partner) partners.
As a result, the document may violate the reproductive rights of HIV-positive persons. “Reproductive rights are settled federal law,” Sutton says. “I don’t now if the state ought to be messing with it.”
“We know that HIV can be effectively managed with medications,” says Sutton. “But these laws were created with a 1984 mentality of death.”
Sutton also expressed concern that the document, which he believes represents similar forms in use in various counties in the state, provides no statement of confidentiality.
“I just don’t think they are going to find these documents are doing what they want them to do,” says Sutton.
And he may be right. A study published in the journal Social Science and Medicine earlier this year found the following in relation to criminalizing HIV non-disclosure:
It emphasizes three key findings: (1) the concept of significant risk poses serious problems to risk communication in HIV counseling and contributes to contradictory advice about disclosure obligations; (2) criminalization discourages PHAs’ [People Living with HIV/AIDS] openness about HIV non-disclosure in counseling relationships; and (3) the recontextualization of public health interpretations of significant risk in criminal proceedings can intensify criminalization.
Other studies have found that such laws have no impact on behavior.
An increased awareness about HIV criminalization issues has led to several actions nationally in the last year. In September of 2010, a new group called the Positive Justice Projectwas launched with a goal of eliminating HIV criminalization. Then just last month, Democratic California Rep. Barbara Lee began floating federal legislation designed to use federal purse strings to eliminate HIV-specific criminal laws.
This is not the first time that documents being used by health departments to inform HIV-positive residents about state laws have come under fire. In Michigan, such documents came under fire earlier this year, and resulted in a letter from the Michigan Department of Community Health to all local health departments and partners saying the documents were neither “endorsed or encouraged” by the state agency. The letter went on to say the documents could stigmatize HIV-positive people further.
In Missouri, similar documents were being used as a key to unlock the door to the federally funded AIDS Drug Assistance Program and medical case management programs. As a result of Michigan Messenger’s investigation, the state announced it would no longer use the documents.
Larry Bryant, director of national organizing for Housing Works and the Campaign to End AIDS, pointed to the other incidents in responding to the Indiana situation.
“It seems that in several states the health department has adopted the role of Gestapo, perhaps encouraged by city, state governments, in how public health policy is decided and implemented,” said Bryant. “In the absence and silence of the CDC in speaking against ignorant, out-dated, and plain incorrect information and tactics that, among other things, supports laws, legislation, and policies that criminalize and discriminate people with HIV, city and state health departments become more aggressive and imposing – particularly to poor and marginalized populations.”
He went further.
“This document essentially defines itself as a quarantine tool,” he said. “It does everything it can to isolate and sterilize people living with HIV despite contradicting itself and what we know to scientifically proven modes of transmission and prevention.”

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