People Living with HIV/AIDS Shut Out of Drafting Regulations on HIV Counseling/Testing; Demand Hearing, Transparent New Process
FOR IMMEDIATE RELEASE
April 29, 2009
CONTACT: Meredith Curtis, ACLU of Maryland, 410-889-8555; media@aclu-md.org
BALTIMORE, MD - The American Civil Liberties Union of Maryland and the national ACLU AIDS Project have submitted comments to the Department of Health and Mental Hygiene (DHMH) regarding proposed changes to state regulations governing HIV counseling and testing procedures. The groups demand that the proposed regulations be halted and a hearing be held, because the amendments go against the spirit and intent of new law and a workgroup's recommendations regarding informed consent to HIV testing.
"It is vital not to lose the sense of urgency in addressing this devastating disease and we are troubled that the concerns of community of those living with HIV/AIDS and their advocates have been ignored in developing new HIV counseling procedures," said Cynthia Boersma, Legislative Director for the ACLU of Maryland. "It is a serious matter to stop requiring that patients agree in writing to be tested for HIV and then have their names unknowingly turned over to the government if they test positive. Any process that takes us down that road must be transparent, lawful, and accountable to those who will be affected by it."
These proposed regulations are supposed to implement the recommendations of a workgroup on HIV/AIDS testing and counseling reflected in state law enacted in 2008. However, workgroup members and HIV positive advocates who asked to participate in drafting the new regulations were excluded from the process. There was no opportunity to ensure new regulations addressed comprehensive informed consent before they were published on March 27, 2009; public comments were due April 27.
The proposed regulations fail to address important community concerns, including:
- The proposed regulations fail to notify individuals obtaining an HIV test about new and retroactive names-based HIV reporting requirements. The proposed regulations do not require that individuals be informed of reporting changes.
- The proposed regulations remove the provision that informs individuals that a health care provider cannot withhold professional services to an individual because the individual is HIV positive, nor can the health care provider discriminate against an individual because the individual is HIV positive.
- The proposed regulations remove information on the availability of anonymous testing.
- In addition, these regulations were written without allowing interested community members sufficient opportunity to participate in the drafting process.
The proposed change in regulations is happening in the context of two years during which the AIDS Administration required providers to report retroactively the names and other personal information of all persons who had tested positive for HIV since 1981. Personal information about HIV patients was reported to DHMH without notifying or obtaining consent of the people affected when these people consented to be tested after being told their names would be withheld from positive test result reports.
The proposed change is also happening in the context of at least one year during which some patients tested for HIV were provided with old written informed consent forms stating specifically that HIV-positive tests would be reported by Unique Identifier code, when in fact positive tests were being reported by name.
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