According to the federal government, everyone between the ages of 13 and 64 should be tested for HIV if they seek health care in the United States. This comes from new recommendations rolled out at the end of September by the Centers for Disease Control and Prevention, which the government is encouraging all health care providers to implement. In a major departure from its prior stance, the CDC also now recommends the following:
There is no question that more people need to be tested for HIV so that those with the virus can seek treatment earlier, but the CDC's approach could have very harmful consequences. Including HIV testing as part of a "routine" screening, based simply on general informed consent for medical care, undermines a patient's right to informed decision making and risks people being tested without knowing it. Further, under the new recommendations, prevention counseling would not be required unless a person tests positive. Counseling, regardless of the outcome of the test, is a vital opportunity to educate patients about HIV infection and transmission risks. Without this counseling, ignorance about transmission risks will continue.
A recent survey found that almost one quarter of Americans wrongly think that HIV can be spread by sharing a drinking glass. Almost every week, Lambda Legal's Help Desks receive calls from people who experience changes in other people's behavior once they disclose their HIV status. Still other callers report that they are the targets of comments or actions by those who presume they pose a risk of transmitting HIV just because they are gay. This stigma often stems from ignorance. Not all of these reactions rise to the level of legally actionable conduct, but they all illustrate the extent of ignorance and prejudice against people living with HIV and gay people generally. The CDC insists that universal screening will reduce the stigma associated with HIV testing. The suggestion confuses cause and effect. HIV-related legal protections have been adopted largely due to recognition of the discrimination people with HIV often encounter; the protections themselves are a response to, rather than a cause of, the problem. Universal screening without consent or counseling does not address the pervasive and troublesome lack of information about HIV and the stigma and discrimination the disease engenders.
Lambda Legal has been working in coalition with national, regional and local HIV advocacy and support groups to explain to the CDC and the public the importance of counseling and specific written informed consent and to highlight the dangers of eliminating those measures. Working closely with other advocates, we are developing strategies, including legislative approaches to prevent dilution of existing protections and to put in place new protections and support for the increased numbers of people who may be tested for HIV. For example, we are drafting model language and briefing papers that can be used by advocates at the state level. We are also strategizing about possible litigation approaches to protect the rights of people tested under the new guidelines. And we will be ready quickly to evaluate and respond to the additional guidance that the CDC plans to issue in early 2007.
As these policy initiatives play out on the state and local level, attorneys throughout the country can advocate to protect the rights of individuals being tested for HIV and for those of us who test positive. They can network with other advocates in their area to monitor any efforts to increase testing, data collection or reporting and to try to ensure that the rights of the individuals affected by such policies are considered and that counter-productive measures are not adopted.
Attorneys can also represent individuals who are tested without their consent or who experience discrimination after testing positive. They can contact Lambda Legal for assistance in such advocacy and litigation efforts. As more people are tested for HIV and the ignorance and prejudice surrounding the disease are not addressed adequately, we anticipate that even more people will, unfortunately and often tragically, experience discrimination. We urge attorneys to remain vigilant through our HIV Project about the CDC's recommended policy changes; to join our network of cooperating attorneys; and to utilize our variety of educational materials, such as our HIV & Your Civil Rights brochure (published in English and Spanish). While the federal government continues pushing its own ill-advised HIV agenda, it is vital that dedicated attorneys and other advocates continue protecting the rights of people living with HIV in both the policy arena and courtrooms nationwide.
Bebe Anderson is HIV Project Director for Lambda Legal. From Of Counsel vol. 2, no 6.