Comment from Dahlem, Gina

Re: CDC-2026-0859 — Proposed Revision of the National Survey of Syringe Services Programs I am submitting comments regarding CDC’s proposed revision of the National Survey of Syringe Services Programs, Docket No. CDC-2026-0859. My perspective is informed by my overdose prevention initiatives and by working with people who use drugs as a family nurse practitioner. To which I have dedicated over 20 years as a clinician working with the underserved populations and over a decade in delivering overdose education and naloxone distribution. I am concerned that unless this survey is revised, it will produce data that are incomplete, misleading, and potentially harmful to the very programs and communities it is meant to understand. One major issue is that CDC needs to be much clearer about what counts as a “program.” A county health clinic, a mobile van, a volunteer delivery network, and an underground peer-run operation are not the same thing. They should not be counted as if they are. The survey should separate organizations, individual programs, fixed sites, mobile units, delivery operations, and volunteer collectives. Otherwise, the data will make the field look much simpler and more uniform than it really is. CDC also needs to be more honest and specific about overdose reversal data. Kits distributed, unique people receiving naloxone, reported naloxone use, and witnessed reversals are all different things. They should be measured separately. Combining them into one big number may sound impressive, but it does not give a clear picture of what is happening on the ground. The survey should also separate direct services from referrals. There is a big difference between starting someone on buprenorphine onsite and giving them a phone number for a clinic. The same is true for wound care, drug checking, safer smoking supplies, and other services. CDC should ask how services are actually provided, not just whether a program can point someone somewhere else. The survey also needs to reflect what harm reduction looks like now. Many programs are not only focused on syringes. They are distributing safer smoking supplies, doing drug checking, supporting secondary distribution, and relying heavily on peer support. If CDC keeps the survey centered mostly on injection access, it will miss how programs are adapting to the current drug supply and to the real needs of people who use drugs. Another concern is how CDC asks about barriers. “Community opposition” is too vague. The survey should ask separately about zoning restrictions, police interference, supply confiscation, funding limits, threats of closure, and other legal or political barriers. These are different problems, and they need different solutions. CDC also needs to be very careful about confidentiality. In some rural areas or hostile political environments, there may only be one program doing this work. Details like location, budget size, staffing, or services offered could make it easy to identify a program, especially if it is underground or operating without public support. CDC should explain clearly how it will protect these programs from being identified or exposed to law enforcement or local officials who may try to shut them down. Finally, the survey should not treat lived experience as a box to check. It should ask whether people who use drugs actually have decision-making power. Are they on governing boards? Are they in leadership roles? Do they help write policies? Do they control budgets? Programs should not get credit just for having people with lived or living experience present if those people do not have real authority. It is true saying, “Nothing about Us Without Us.” My main recommendations are that CDC revise the survey to: 1.Clearly separate different types of programs and service models; 2.Measure naloxone distribution, recipients, use, and reversals as separate data points; 3.Ask how services are actually delivered, not just whether referrals exist; 4.Include current harm reduction practices like safer smoking supplies, drug checking, secondary distribution, and peer support; and 5.Strengthen confidentiality protections for rural, underground, and politically vulnerable programs. CDC must design this survey with people who operate and use syringe services programs, not merely about them. If the survey is intended to guide national public health policy, it must accurately reflect how harm reduction actually works on the ground and protect the people doing this work under increasingly difficult conditions. Thank you for the opportunity to submit these comments.