What is molecular HIV surveillance?
Molecular HIV surveillance is the practice of monitoring different strains of HIV. Through a variety of processes, scientists track the variations for research, public health surveillance and intervention.
These genetic sequencing tests help identify how a person living with HIV would respond to different medications. Providers are then required to report individualized resistance information to health departments, which use the information to map networks of HIV transmission.
Why are we bringing this up now?
There are concerns that the technology could be used for purposes other than tailoring treatment and tracking HIV transmission networks. In particular, there are concerns about the data being used against a person in criminal cases. According to the Centers for Disease Control and Prevention, 31 states have laws that criminalize HIV transmission.
The CDC has provided funding for health departments to do HIV surveillance. That funding runs out in December. We expect the CDC to announce new funding, and we want to raise our concerns once again and reiterate our suggestions for how to safeguard the data from being used in harmful ways.
There is a long history that leads to medical mistrust, stigma and discrimination. Public health measures, including HIV surveillance, must address these legacies, or else people will not receive the lifesaving testing, treatment and care they need.
What do we recommend?
The AIDS United Public Policy Council, comprised of more than 55 of the country’s leading HIV-focused organizations, recommends the CDC use its funding process to:
- Strengthen community oversight and accountability.
- Reduce the variation in data protections and security standards across state jurisdictions.
- Shield public health data from criminal, civil and immigration legal matters.
- Address issues of informed consent for participation in molecular HIV surveillance.
- Report responsibly on cluster investigations.
- Address specific risks of molecular HIV surveillance and injection drug use issues.
How can you join in the conversation?
We need to keep the pressure on these conversations and ensure that those of us living with HIV are heard, and listened to. Here are some ways you can be heard:
- The Presidential Advisory Council on HIV/AIDS will convene PACHA-to-the-People on Sept. 19-20, and the council wants to hear from you. Sign up for public comment by Sept. 9.
- The Positive Women’s Network’s campaign Ready, Set, REPEAL provides information and tool kits for advocates to fight against HIV criminalization and push Congress to pass the The REPEAL HIV Discrimination Act (H.R. 6111).
- Connect with a network of people living with HIV— The U.S. People Living with HIV Caucus is for, by and all about people living with HIV. Join the conversation and join the Caucus.
- Follow the online conversation on Twitter by using the hashtags #EndMHS, #DataPrivacy, #DataProtection, #HIVJustice and by following @AIDS_United, @HIVJusticeNet and @uspwn.
