When my grandfather was a private practice pediatrician in Queens, making house calls in exchange for eggs and hand-knitted hats, medical communications were often between one doctor and his or her patient (or parent). As a primary care provider to adults with opioid use disorder, I need to communicate with many other clinicians. Privacy rules can thwart me from doing that.
The U.S. medical system has changed dramatically in the past century, creating complicated structures that require doctors to communicate not just with their patients but also with other doctors, laboratories, radiology centers, pharmacies, and insurance companies. We rely on this flow of information to improve patient care and safety. It’s important for doctors to confer with each other when making medical decisions, especially for patients who have multiple medical issues. Pharmacists manage complicated medication regimens requested by multiple prescribers in order to avoid harmful drug interactions. Insurance companies ensure that everyone gets paid.
Privacy must be considered in any meaningful discussion about sharing medical records. An individual’s health information is private and, if shared inappropriately, could cause great harm. For my patients with substance use disorders, inappropriate disclosure of their treatment can be devastating. Prejudice against people with opioid and other substance use disorders can lead to job loss and rupture of important relationships. Ironically, this prejudice can extend into the medical community, leading to sub-par treatment. I have had too many patients hide their opioid use disorder diagnosis from their other doctors, fearing judgment and poor treatment.
The extreme sensitivity of health information related to addiction treatment led to the 1972 passage of a federal regulation, 42 CFR Part 2. It was designed to protect patients by separating records related to addiction treatment from the rest of the medical record, allowing them to seek treatment for an addiction in private.
In 1996, President Bill Clinton signed the Health Insurance Portability and Accountability Act (HIPAA), another law designed to protect patient privacy and protect the confidentiality of health information. HIPAA added another layer of protection for patients being treated for stigmatized diseases such as addiction.
42 CFR Part 2 prevents programs and doctors who treat patients with substance use disorders from sharing any information about that treatment without explicit permission from the patient. That means many doctors are treating patients with opioid and other substance use disorders without knowing about this diagnosis. That’s dangerous.
Patients with an opioid use disorder treated with a medication such as methadone could experience potentially harmful drug interactions if given certain cardiac or anti-epileptic drugs. Physicians treating pain in patients with a distant history of addiction can unwittingly put patients at risk of relapse by prescribing opioids without appropriate counseling. Lacking a complete medication list, pharmacists can’t assess the safety of medication regimens. Mental health professionals can miss significant risks without knowledge of addiction diagnosis and treatment.
Today, 42 CFR Part 2 is more of a hindrance than a help to patients with substance use disorders. The special “protection” provided by 42 CFR Part 2 has become a wall hiding diagnoses that should be known by professionals involved in the care of these individuals.
Hiding addiction disorders like this sends the message that they are somehow different from other brain diseases and inadvertently supports the stigma that surrounds them. Keeping addiction diagnoses hidden from medical personnel prevents them from seeing the true frequency and variety of patients with addiction, limiting their view to the patients who are most severely affected by their substance use disorder while obscuring those who appear to be doing well.
Addiction disorders are like most other chronic diseases — treatable, occasionally fatal, and with symptoms that wax and wane over a lifetime. In today’s medical system, all patients need a team to provide excellent care. For people with chronic diseases, that team — and good communication between team members — is even more essential.
We have reached a point where 42 CFR Part 2 is keeping an essential player, the addiction treatment provider, on the bench. Fortunately, with the support of more than 40 medical professional organizations, U.S. lawmakers are moving towards a change. In June, the House of Representatives passed the Overdose Prevention and Patient Safety Act (H.R. 6082), which will bring addiction treatment into the mainstream medical system and align privacy regulations with HIPPA.
The time has come to drop 42 CFR Part 2 and let us all join the huddle.
Melissa Stein, M.D., is the medical director of Montefiore Health System’s Division of Substance Abuse.