Illinois Methadone Patients Could Be First to Have Privacy Rolled Back After SAMHSA Rule-Change

An Illinois Senator appears to be the first state lawmaker to push for a bill that would make a controversial federal rollback of opioid use disorder patients’ privacy rights mandatory at the state level.

On February 26, state Senator Mattie Hunter introduced Senate Bill (SB) 1844 to require so-called opioid treatment programs (OTP), often known as methadone clinics, to share the data of consenting patients with the Illinois Prescription Monitoring Program (IPMP).

The bill comes after a successful effort by the Substance Abuse and Mental Health Services Administration (SAMHSA), the federal agency regulating OTPs, to change the regulation, codified in 42 CFR Part 2, that has historically protected OTP patients’ privacy. SAMHSA had already been tweaking the protections, but a more radical shift in policy came in July 2020, when it finalized a rule-change permitting OTPs to disclose patient information to prescription drug monitoring programs (PDMP). That’s in contrast to a 2011 “Dear Colleague” letter by the agency’s Center for Substance Abuse Treatment warning against it.

On its face, the proposed Illinois law seems to be protecting patients’ privacy. It requires consent before sharing the data, and it specifically bans conditioning the provision of treatment on consent—which attorneys Jacqueline Seitz and Deborah Reid of Legal Action Center, a legal advocacy organization that specializes in substance use disorder treatment law, said is “a significant protection for patients, and we would like to see similar prohibitions in all state laws.” It also prohibits sharing the patient’s signed consent document with law enforcement.

But both matters are complicated.

Some advocates have been worried that OTP patients may not be fully informed of the implications of consenting to PDMP disclosures. In a guidance statement just before SAMHSA’s finalized rule, the American Association for the Treatment of Opioid Dependence (AATOD) stressed that patients ought to be informed that their private health data “cannot be taken back” once shared with a PDMP.

Agreeing that it’s “not a perfect guarantee of patients’ privacy rights and right to access confidential treatment,” Seitz and Reid raised the question, “how will patients know that they have the right not to authorize disclosure to the PDMP?” They added: “Many of us have been in doctor’s offices and had a pile of paperwork pushed in front of us to sign, without knowing whether or not signing the paperwork is a condition of treatment.”

Law enforcement’s access to IPMP appears to be staunchly limited by the plain language of SB 1844. But recent changes in federal regulation have created more openings for patient information to be unlocked for criminal investigations. In December 2020, SAMHSA finalized a rule that allows law enforcement to seek access to PDMP records for an OTP patient in a criminal investigation or prosecution, even if that individual was not the one to have “allegedly committed” the “seriously extreme crime,” which the agency clarified includes drug trafficking.

Again, Seitz and Reid see the bill as raises more questions than answers. “How will PDMPs meaningfully prevent law enforcement from using Part 2 data to criminally investigate or prosecute a patient, as required by Part 2? How will a patient enforce their right to revoke their consent? And how will a patient know if the PDMP illegally re-discloses their treatment records?” they questioned.

The stakes of the bill are also unequally distributed by race. “Facilitating law enforcement access to treatment records disproportionately harms BIPOC communities, which are already overpoliced and underserved, and reflects an outdated and unproven strategy for addressing substance use disorders and fatal overdoses,” Seitz and Reid said. “Patients deserve confidential healthcare treatment for their substance use disorders, which should be treated as a health condition—not a crime.”

Senator Hunter did not respond to Filter’s request for comment about her legislation. She has a professional history with substance use disorder treatment. She is a Certified Alcohol and Drug Counselor, which she says, according to her website, “has equipped” her with “expertise in crafting substance abuse and addiction prevention policies.”

The Illinois legislation has been referred to the Senate’s Assignments Committee, where it awaits its next step in the legislative process. At publication time, SB 1844 does not appear to be scheduled for review by any committee.

Despite the potential lack of momentum behind the bill, Senator Hunter’s introduction of SB 1844 confirms the prediction of AATOD, that OTP information sharing with PDMPs would “become a state-by-state issue.”

“The August 2020 rule change left a lot of ambiguity for patients, providers and PDMPs,” said Seitz and Reid, “and we are just beginning to see how states and PDMPs attempt to implement the change.”


Photo by Kevin Ku on Unsplash

Sessi Kuwabara Blanchard

Sessi is an independent drug journalist and drug-user activist. She lives in New York City.

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