When a doctor sees a patient with a runny nose and body aches, the doctor may think it is a cold or the flu. For patients with substance use disorder (SUD), however, those symptoms can signal other complications related to their addiction.
Unfortunately, without access to critical health history, the connection between commonplace symptoms and SUD can be missed. As a result, doctors may prescribe a medication to a patient with addiction that could jeopardize their life or fail to send them home with a medication like naloxone that could save it. Amid a national drug overdose crisis that resulted in nearly 108,000 deaths last year, every interaction with the U.S. health care system represents a critical opportunity to treat and manage addiction.
So why are there so many missed opportunities?
The reasons are complex, but one factor is a federal law that has made it unnecessarily difficult for addiction specialists, like us, to share their patients’ medical records without first obtaining detailed patient consents—even for purposes of coordinating their treatment and ensuring reimbursement for it. Due to a highly technical federal statute and its implementing regulations called 42 CFR Part 2, addiction specialists often cannot share information that would identify a patient as having SUD without going through an extraordinarily strict authorization process for each disclosure.
When 42 CFR Part 2 first became law in 1975, it was meant to protect the privacy of patients with SUD in settings outside of health care, such as administrative or criminal proceedings. Given the stigma and discrimination associated with addiction, the need for that kind of confidentiality was, and still is, important. Even today, law enforcement and probation officers regularly come into clinics like ours seeking information about a patient’s medical history without the patient’s prior consent. Of course, we would never turn this sensitive information over to them without the patient’s authorization or being legally required to do so. In this regard, the law is a successful safeguard and helps medical staff better protect our patients’ privacy.
Decades later, however, the unintended consequence of other provisions of the law has been the dangerous siloing of addiction care within the larger medical system, which reinforces barriers to safe, effective treatment for Americans living with SUD.
The onerous and confusing requirements created by federal regulations often prevent health care professionals from accessing information they need to provide better care to patients with addiction. Without the ability for clinicians across a patient’s health care team to access complete information about SUD history and medications used to manage it, diagnostic, treatment, and reimbursement approaches can wildly diverge. Even when a patient gives explicit permission to share SUD records, we often run into barriers put in place by health systems to avoid any chance of running afoul of federal law.
Integrated care is a best practice across all of medicine. Yet for the 40 million Americans currently living with SUD, this coordinated approach is often out of reach due to these antiquated privacy regulations. No other medical condition is governed by 42 CFR Part 2 — a fact that underscores the continued stigma and discrimination patients with addiction face when accessing health care.
Just imagine if 42 CFR Part 2 applied to heart disease. Instead of facilitating a cardiologist’s ability to share a patient’s heart history and medication list with other medical professionals involved in that patient’s care, the patient would bear the burden of completing multiple, complicated consent forms or communicating these medical details from memory. Most people agree that this would seriously undercut a doctor’s ability to care for the patient — yet this scenario often exists for Americans with addiction and the health care professionals who treat them.
To break down these barriers and improve care coordination and safety for patients with SUD, we must modernize federal privacy rules governing SUD records.
In March 2020, Congress passed a critical COVID-19 relief bill, which included provisions that will facilitate whole-person, integrated care for people with addiction. The law called for aligning 42 CFR Part 2 more closely with the Health Insurance Portability and Accountability Act (HIPAA) — the federal law that governs the use and disclosure of other medical records. Congress also passed provisions that protect patient rights in several ways, including by requiring initial patient consent for the sharing of applicable SUD records and, unless properly authorized, prohibiting those records from being used in civil, criminal, administrative, or legislative proceedings against a patient by a government authority. In addition, Congress provided explicit anti-discrimination protections in relation to health care, employment, housing, and critical social services and benefits.
We are optimistic these statutory changes will improve care coordination and safety for patients with addiction, while safeguarding patient confidentiality. Moving forward, the Biden-Harris administration must issue a strong 42 CFR Part 2 rule implementing these long-overdue provisions. If we truly want to mainstream addiction treatment and save lives, then we must mainstream medical record sharing, too.
Nzinga A. Harrison, MD, FASAM is a Board Member of the American Society of Addiction Medicine, an addiction specialist, and Chief Medical Officer and Co-Founder of Eleanor Health, a company built on equity and justice that develops mental health medical homes for individuals affected by substance use disorder.Paul H. Earley, MD, DFASAM is the immediate past president of the American Society of Addiction Medicine, an addiction specialist, and a person in long-term recovery.