Relaxing patient privacy rules would worsen the opioid epidemic

As the national opioid epidemic continues to escalate, policymakers are increasingly desperate for solutions to stem the tide of devastation. Those of us who have been working to fight for decades to combat addiction in America — through the crack epidemic, the meth epidemic, and the previous heroin epidemic — have a message for them: Listen to the voices of patients, families, and recovery advocates to understand what to do and how to avoid repeating the mistakes of the past or creating more damage.

We also have a message for patients, families, and recovery advocates: Make your voices heard now as Congress considers the Overdose Prevention and Patient Safety Act. This legislation would jeopardize the confidentiality of substance use treatment and discourage patients from seeking the care they need to get well and stay well — and stay alive.

At issue is a section of the Code of Federal Regulations known as 42 CFR Part 2 (or just “Part 2” for short). It was established more than 40 years ago in the middle of the nation’s previous opioid epidemic, when policymakers realized that people were not seeking treatment because they were afraid that doing so could lead to their being arrested, losing custody of their children, or other negative consequences.

Part 2 created an added layer of confidentiality protection for individuals receiving treatment in addiction-specific programs, such as residential addiction treatment programs, methadone clinics, and detoxification units within hospitals. Treatment programs covered by Part 2 are, for example, prohibited from giving a patient’s medical records without a special court order to law enforcement or to people suing the patient. These programs also cannot share patient information with payers or other providers without the patient’s written consent.

Unlike other diseases, drug addiction is criminalized in our society. It is not just stigma that keeps people in recovery from being open about their history of alcohol and/or drug addiction. It is the very real risk that disclosure could result in loss of employment, loss of housing, loss of child custody, loss of benefits, discrimination by medical professionals, and even arrest, prosecution, and incarceration. Part 2 is often the only shield between individuals in recovery and the many forms of discrimination and prejudice that could destroy their lives.

That is why more than 100 organizations representing millions of people in recovery from addiction have joined forces to oppose weakening the core protections provided under 42 CFR Part 2. Such a change would have the chilling effect of discouraging patients with substance use disorders from seeking the care they need to get well and stay well.

Unfortunately, Part 2 has become a convenient scapegoat for miscommunication or poor treatment of patients with substance use disorders in general medical settings. One reason for this is the widespread lack of understanding about when and where Part 2’s protections apply. There is a misperception that these rules contribute to the opioid crisis by preventing the sharing of health information in medical settings. That is inaccurate. Part 2 applies only to health care facilities and clinicians whose primary purpose is to provide substance use disorder care. It doesn’t apply in emergency departments, surgical units, primary care offices, and the like. In those settings, the Health Insurance Portability and Accountability Act, the standard patient privacy law, applies.

So when a patient comes to an emergency department after having overdosed on heroin or another opioid, Part 2 does not stand in the way of doctors contacting the family. When a patient comes in for surgery and the doctor does not ask about or document the patient’s history of substance use, Part 2 is not the problem. HIPAA is already the law of the land in these scenarios, and relaxing Part 2 will not improve communication or patient care.

What relaxing or dismantling Part 2 will do is make the records of patients and their families engaged in addiction treatment more vulnerable to being misused in ways that harm the patient. It means that patients in recovery from opioid addiction who are taking medications such as methadone, buprenorphine, or injectable naltrexone would lose the added protection that Part 2 currently provides. It means that family members who are participating in a loved one’s treatment risk having details of family therapy shared without their consent.

In the midst of this devastating national opioid epidemic, we cannot afford to have patients and their families fear seeking treatment because they don’t have faith that their confidentiality will be protected. Instead of improving care, the proposed changes to 42 CFR Part 2 could discourage patients from seeking treatment while also exposing them to potential discrimination and harm, as well as magnifying their vulnerability to data breaches, an increasingly common occurrence in today’s connected world.

When it comes to health care policy, decision-makers should follow the standard “First, do no harm” rule. Loosening privacy protections for people in treatment for a substance use disorder or in recovery from one would undermine efforts to solve the nation’s opioid crisis. And the harm stemming from it would be immeasurable and immediate.

Paul N. Samuels is the president and director of the Legal Action Center, a national nonprofit legal and advocacy organization that works to protect the rights of people with addiction. Patty McCarthy Metcalf is executive director of Faces & Voices of Recovery, the nation’s leading recovery advocacy organization.