by Elena Ferguson, PWN Policy Specialist
National Black HIV AIDS Awareness Day on Feb. 7 sheds light on the disproportionate impact of HIV on Black communities. Not only do Black Americans face barriers to accessing treatment and testing, but they are also particularly vulnerable to increased surveillance through a practice known as “molecular HIV surveillance” (MHS).
The Centers for Disease Control and Prevention (CDC) first began requiring all states accepting HIV prevention funds to implement MHS in 2018. MHS refers to the public health use of individual HIV genetic data to identify the sexual and social networks of people who are diagnosed with HIV by mapping out so-called “clusters.” The CDC defines “clusters” as a group of people with a similar HIV sequence.
The MHS program targets Black, brown, and low-income communities by requiring all health departments to engage in an invasive and controversial surveillance practice that nonconsensually collects health data from the 1,086,806 people in the U.S. living with HIV. Surveillance technology is not neutral in a racist society. We must resist and dismantle technologies that profile, criminalize, and punish us.
Imagine that you are a person living with HIV, newly diagnosed, or wanting to switch medications. Your doctor will do a blood test to figure out the best treatment plan for you by identifying HIV viral mutations. Unbeknown to you, those results will be used not just for your treatment, but for surveillance. Your viral code is sent to the state health department and then to the CDC, which does not have full access to your identifying information. The CDC compares and contrasts your viral code with the viral code of other people living with HIV to determine if there is a new and emerging group of people living with HIV who share a close genetic match. If the CDC determines that there is an HIV transmission network, they tell the state health department. It’s during this portion that the identifying information once redacted is now restored.
Armed with identifying information, infectious disease specialists can then track folks down, ask for their sexual or drug-using contacts, and hypothetically connect them to care. But contact tracing like this can also produce reckless, racist, and stigmatizing media coverage, in which news outlets name specific neighborhoods or streets that are “hotbeds” for an active cluster.
