CHLP Submits Comments to the CDC Regarding Notice and Consent in HIV Testing

On December 20, 2024, CHLP joined with Lambda Legal, the Legal Action Center, the U.S. People Living with HIV Caucus, Positive Women’s Network, Transgender Law Center, The Well Project, HealthHIV, AVAC, Disability Rights Education and Defense Fund, and The American Civil Liberties Union in submitting comments in response to the Center for Disease Control’s (CDC) draft "Recommendations for HIV Screenings in Clinical Settings.” 

The portion of the "Recommendations" on which CHLP’s comments are focused is the section that removes a person’s ability to receive direct notice an HIV test will be performed on their blood and a meaningful opportunity to give informed consent.

CHLP’s submitted comments address the necessity of guaranteeing a person’s right to give informed consent as to any portion of their medical care, and that the impact of these changes may be to further drive a wedge between communities that are vulnerable to HIV and the medical care system. The comments suggest that there are evidence-based practices the CDC could use to modify their Recommendations that would easily support the goal of increased testing while preserving people’s right to actual notice that an HIV test would be performed and allow them to be fully engaged in shared decision-making with their provider.

As established in the comments, while it is of utmost importance that people know their status, merely knowing one's status is not enough; people must feel comfortable entering into and remaining in medical care. Therefore, at a minimum:

• The CDC must ensure that all people tested for HIV are given direct notice of a facility’s HIV testing policy;
• This notice must include a reference both to the ability to ask questions and to opt out of testing; and
• This notice must be provided in a clear manner, not simply buried in a general consent form, so that it is unequivocal that it was received. This may include changing the form of notice given to account for each individual’s needs due to disability or language barrier.

The comments submitted by CHLP and our partners will serve to inform the CDC on HIV testing practices to better address legacies of medical mistrust and improve the lives of people living with and affected by HIV.