Advocates and Health Care Providers Voice Concern about Trump Administration’s Effort to Weaken Confidentiality and Redisclosure of Substance Use Disorder Treatment Records

August 23, 2019: For the third time in three years, the Substance Abuse and Mental Health Services Administration (“SAMHSA”) has proposed changes to federal substance use disorder confidentiality rules. The proposed new rules, released yesterday by the Department of Health and Human Services, recommend revisions that will weaken the protections against unauthorized disclosures of a patient’s substance use disorder (“SUD”) treatment records, giving patients less say over where their personal health information is shared. The notices of proposed rule-making can be found here and here, and will be formally published in the Federal Register on August 26, 2019.

Over 100 of the nation’s leading addiction treatment, recovery, health care, and advocacy organizations have voiced strong concerns about recent proposals to replace Part 2’s confidentiality requirements with the Health Insurance Portability and Accountability Act (“HIPAA”)’s more relaxed standards, which would permit the release and re-disclosures of SUD medical record information for “treatment, payment, and health care operations” purposes – without the patient’s consent.

Members of the Campaign to Protect Patient Privacy Rights maintain that in the midst of a national opioid crisis and overdose epidemic and our nation’s high rates of alcoholism and use of other drugs, weakening existing protections will only prevent people who need SUD treatment from entering care out of fear that their private health information would be used against them in harmful ways.

The federal SUD confidentiality rules, known as 42 CFR Part 2 (“Part 2”), were originally established to encourage people in need of substance use disorder treatment to seek care by minimizing discrimination against and negative consequences to people seeking and completing drug and/or alcohol treatment. The rules prevent treatment providers from disclosing information about a patient’s substance use treatment without patient consent in most circumstances. While the proposed new rule maintains patient consent in initial disclosure, it does not uphold consent in re-disclosure, effectively leaving patients vulnerable to harm through unauthorized re-disclosure after initial consent to a single provider.

Unlike most other medical illnesses, substance use disorders often have criminal and civil legal consequences. Part 2 provides safeguards for patients against potentially disastrous results of unauthorized disclosures. Unlike individuals with other illnesses or disabilities, SUD patients are vulnerable to loss of housing, loss of employment, loss of child custody, arrest, prosecution, and incarceration. Additionally, many people with SUD are not protected by federal or state civil rights laws that safeguard people with disabilities from employment, housing, and other types of discrimination.

SAMHSA updated Part 2’s provisions in 2017 and 2018 to make it easier to share SUD information in electronic health networks and among patients’ providers in modern health care delivery systems to coordinate care, while maintaining patient confidentiality protections.

“While the Legal Action Center strongly supports the need for coordinated flow of health information between providers, it must be done so with patient consent in disclosure and re-disclosure. It is paramount that patient privacy remains a cornerstone of health care delivery and that Part 2 is maintained to safeguard individuals in SUD treatment from harm,” says Paul Samuels, President and Director of the Legal Action Center. He adds, “The confidentiality rule is not a hindrance to the facilitation of effective services, but a necessary protection for individuals who would otherwise be susceptible to a multitude of detrimental consequences if their SUD information was disclosed without their permission to potential employers, housing providers, law enforcement, and more.”

“If the Trump Administration wants to turn the tide on this national health epidemic, it should start with the premise that it can and must make the situation better by focusing on pragmatic, real-world solutions that improve clinical coordination and patient outcomes. With over 90% of people with substance use disorders not currently accessing treatment, weakening the current protections for patient privacy contained in Part 2 will not fix what is broken. Instead, it will drive even more  people away from substance use disorder treatment and penalize the over 20 million people in recovery from substance use disorders,” said H. Westley Clark, M.D., who served as the director of the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment from 1998-2014.

Mark Parrino, President of the American Association for the Treatment of Opioid Dependence echoes this concern: “In the midst of the worst opioid epidemic in our nation’s history, we cannot afford to have patients fearful of seeking treatment because they do not have faith that their confidentiality will be protected. Patients are already anxious about the proposed new rule and the threat of opioid treatment programs (“OTPs”) sharing their sensitive health information through their state Prescription Drug Monitoring Programs (“PDMPs”), which may be accessible to entities like law enforcement who could then use the information to prosecute patients.”

Robert D. Ashford, a person in long-term recovery and PhD candidate at the University of the Sciences asserts, “I will no longer be actively disclosing my SUD treatment history to doctors or medical staff. I do not want my life insurance or health insurance rates to go up. I also don’t want my SUD treatment history to be part of the EHR when there are hundreds of HIPAA breaches every year. Additionally, for those working in OTPs. If this regulatory change passes, please do not start reporting your clients into the PDMP. Law enforcement has regular access to such databases, and stigma is alive and well unfortunately. Your patients deserve privacy and protection while engaged in your care.”

The Executive Director of Faces & Voices of Recovery, Patty McCarthy Metcalf, adds: “Many of us would not have gone to treatment or accepted services if we thought that our information would have been shared with other entities without our permission. We would not have put our careers, reputation, or families at risk of stigma and discrimination if we were not assured that information about our substance use disorder was safe and would only be shared with our consent.”

“For pregnant and parenting women this rule change could be particularly disastrous,” says Lynn Paltrow, Executive Director of National Advocates for Pregnant Women. “Many women across the country face punitive and counterproductive state action, including arrest, if their pregnancies and substance dependency problems are not kept confidential. Fear of exposure, arrest, and other punitive state action have repeatedly been shown to discourage women from seeking health care during pregnancy and when giving birth. A commitment to maternal, fetal, and child health requires that the Part 2 protections remain in effect.”

Alice Dembner, Project Director for Substance Use Disorders at Community Catalyst says, “People with substance use disorders need comprehensive services to get and stay well, and that requires coordination by their health care providers. But we should not sacrifice consumer control over their personal health information, at risk to their lives, to get that coordinated care. Instead, providers can simply ask patients what information they are willing to have shared.”

The Legal Action Center will be carefully analyzing the proposed new rules and will publish our analysis  on, in addition to submitting them to SAMHSA. All impacted stakeholders are urged to respond to the two SAMHSA proposed rules with comments before the deadlines of 30 and 60 days respectively, after the Federal Register publication date of August 26, 2019.

For more information and resources about Part 2, please visit the Legal Action Center’s website. To learn more about the Campaign to Protect Patient Privacy Rights or to find out how to get involved, please e-mail Deborah Reid, Senior Health Policy Attorney at the Legal Action Center at [email protected].

About the Legal Action Center: Established in 1973, the Legal Action Center is the only non-profit law and policy organization in the United States whose sole mission is to fight discrimination against people with histories of substance use disorder, HIV/AIDS, or criminal records, and to advocate for sound public policies in these areas.

Media Contact: Arianne Keegan
Email: [email protected]
Phone: 212-243-1313

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