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.

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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.

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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.

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  • I know and respect Dr. Stein but I strongly disagree that 42 CFR is more of a hindrance than a help to patients with substance use disorders.

    Understandably, Dr. Stein writes from her perspective as a physician. However, 42 CFR doesn’t exist to help physicians. Nor does it exist to coordinate care among pharmacists, social workers, mental health providers, nor insurance companies. 42 CFR exists to protect patients with substance use disorders from discrimination.

    It is true that medical systems and technology have undergone radical change in the 46 years since 42 CFR was enacted. Unfortunately, society’s views toward methadone treatment, even in the midst of an opioid epidemic, have not had the same transformation. That leaves patients vulnerable to discrimination and in need of protection. This is some hindrance to providing care to SUD patients on the part of our medical professionals. This care requires stopping and asking the patient for their consent. It also means that electronic records must be configured to ensure that this extra consent to ensure information is subject to repeated disclosure and exceeds HIPPA’s protections is requested for and completed by SUD patients.

    In turn, SUD patients can feel secure that their care is confidential and safe in the knowledge that they are protected from discrimination when they seek treatment.

    Patient-centered care is a term heard frequently and strived for throughout healthcare. A salient example of focusing on the patient’s needs is allowing the patient the dignity to consent to release information as provided under 42 CFR.

    Very truly yours,

    Allegra Schorr
    President
    Coalition of Medication Assisted Treatment Providers and Advocates

  • In the normal course of general medical practice, 42 CFR Part 2 does not apply. The odd part of this article is that it presumes that the person suffering from a substance use disorder is inherently untrustworthy and not deserving of respect. In addition, it assumes that any adverse consequence suffered by the person as a result of gratuitous disclosure of the patient’s information is of no concern of the medical community. Finally, it treats the person with a substance use disorder as an idiot for telling the truth about their substance use. Perhaps, this is why the overwhelming majority of people who suffer from a substance use disorder meeting the criteria for treatment are not in treatment and do not believe that they need treatment. When one looks at the case-law associated with 42 CFR Part 2, one finds people seeking access to a person’s substance use medical records for purpose of gaining an advantage in a divorce, financial one-upsmanship in stock transactions, parental rights termination, use in criminal justice settings and other purposes independent of actual treatment. For example, Courts have found that even with blatant violations of 42 CFR Part 2 by the criminal justice system, the evidence found from that violation does not have to be suppressed, leaving the information self-disclosed by the patient a monument of self-incrimination. So, what is the purpose of substance use disorder treatment if it means that just when one is seeking help the very act of help seeking is injurious? In truth, for most substance use disorders, there are no FDA approved medications involved. And, even when medications are involved in substance use disorder treatments, most clinicians don’t want to use them or see the patients. Finally, what’s wrong with asking the patient about their medications or their substance use history? In addition, the substance use disorder treating clinician only needs to seek permission from the patient about disclosing such information to other medical practitioners . No, this article simply demeans those with substance use disorders and provides other providers the advance option of not treating those with substance use disorders. Finally, when a patient experiencing a substance use disorder is harmed by the unconsented disclosure of information, who will be liable? My bet is on the substance use disorder physician, not the receiving entity which releases that information into the storm sewer of the health care operations rubric.

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