Comment from Anonymous

I am submitting this comment to the Centers for Disease Control and Prevention regarding the proposed revision of the National Survey of Syringe Services Programs, Docket No. CDC-2026-0859. My perspective comes from personal experience using syringe services programs and from my history in harm reduction. I know what these programs mean beyond budgets, service counts, and federal data. They provide sterile supplies, naloxone, health information, referrals, and human connection without requiring people to stop using drugs before receiving care. For many participants, an SSP is their only consistent connection to healthcare and one of the few places where they are treated with dignity. I am concerned that information collected for this survey could be weaponized against active SSP participants and the programs serving them. Data gathered for public health can later be used for surveillance, investigation, funding retaliation, political attacks, or program closures. Information about program locations, operating models, budgets, delivery services, secondary distribution, participant populations, and relationships with law enforcement could expose underground and politically vulnerable programs. Removing names does not eliminate this risk. In a rural county or small community with only one SSP, a combination of geography, program size, funding, and services may identify the organization. Detailed demographic information can also indirectly identify small groups of participants. The CDC must consider more than how it intends to use this information today. It must consider how another agency, administration, or law enforcement body could use it tomorrow. Once sensitive information is collected, it may become vulnerable to subpoenas, public records requests, interagency sharing, political demands, or future policy changes. Fear of surveillance has real public health consequences. If people believe their information could reach law enforcement or hostile government officials, they may avoid SSPs, withhold information, reuse supplies, use drugs alone, or disconnect from healthcare. Programs may refuse to participate in the survey or provide incomplete answers. That would endanger participants while making the federal data less accurate. Before collecting additional information, the CDC should publish the complete survey instrument and a detailed privacy assessment. Programs and participants deserve to know exactly what information will be collected, who will have access to it, how long it will be retained, whether it can be shared with other agencies, and how it will be protected from law enforcement access and political interference. The CDC should collect only the minimum information necessary for legitimate public health purposes. It should avoid exact locations, delivery routes, staff identities, participant identifiers, and combinations of details that could reveal underground programs. Results should be reported only in aggregated form, with small groups and geographic categories suppressed when disclosure could identify a program or participant. Survey data must never be used for criminal investigations, immigration enforcement, surveillance, funding retaliation, licensing actions, or program closures. Programs should be allowed to skip sensitive questions without penalty. Informal, mobile, volunteer, and underground programs must be able to participate without being forced to reveal their identities. Most importantly, people who currently use SSPs and people with lived or living experience of drug use must hold real authority over the survey. They should help decide what is collected, how it is protected, who can access it, and how the findings are published. Syringe services data should be used to improve care, identify unmet needs, and document barriers. It should not be used to build a map of people and programs for enforcement or political retaliation. People who use drugs have been treated as subjects of surveillance for far too long. The CDC must design this survey with the people who use and operate syringe services programs, not merely about them. Privacy protections must be enforceable, not promised. The agency must prepare for the reality that information collected with good intentions today can be weaponized tomorrow.