The authors of a recent Health Affairs Blog post argue that 42 CFR Part 2, the law designed to protect confidentiality of patients with substance use disorders, is outdated and unnecessary. We could not disagree more. 42 CFR Part 2 provides bedrock protections for people with substance use disorders that are as critical now as they were in the 1970s when the law was first enacted. The purpose of the confidentiality law is to ensure that a person with a substance use disorder is not made more vulnerable to discriminatory practices and legal consequences as a result of seeking treatment. Unfortunately, patients with substance use disorders still face enormous consequences associated with disclosure, including loss of employment, loss of housing, loss of child custody, loss of benefits, discrimination by medical professionals, and even arrest, prosecution, and incarceration. As our country faces an unprecedented epidemic of opioid addiction and overdose, we must ensure that fear of discrimination does not deter people from seeking treatment.
The Reality Of Discrimination
Although scientific advances over the past decades have shown that addiction is a chronic medical illness, the view that it is a “moral failing” remains prevalent and the associated stigma is persistent. As attorneys at a non-profit legal organization, we not only routinely communicate with substance use disorder advocacy and treatment organizations, but we see clients who have experienced significant negative consequences as a result of prejudice and ignorance. In many of these cases, being in treatment was itself the basis for a discriminatory response, and we provide a few examples below:
- a father in recovery who was being denied visitation with his children because he was in methadone treatment, despite the fact that he was not using any illegal substances;
- a mother who was being threatened with eviction from a shelter because she was being treated with prescribed methadone for her opioid addiction; and,
- a young man whose employer refused to allow him to return to work after he successfully completed treatment for alcoholism, alleging that he was a safety threat even though his physician had cleared him to return to work with no restrictions.
Despite what the previous Health Affairs Blog authors contend, it is not confidentiality protections that undermine the message that addiction is a chronic medical illness. Rather, it is arresting, prosecuting, and incarcerating people because of their illness; it is removing parents’ children from their care because of their illness; it is laws that make it legal to fire someone or deny them housing because they suffer from this illness; it is the lived experience of patients who face discrimination from their health care providers, insurers, and communities on the basis of their illness — that actually weakens the perception of substance use disorder as a chronic disease. The confidentiality law is often the only shield between an individual in recovery from addiction and the many forms of discrimination and prejudice that could destroy their lives.
The fact that much of the behavior associated with the disease of addiction is criminalized changes the scenario for both doctors and patients when it comes to disclosure. Health care providers—even well-meaning ones—who do not acknowledge that disclosure of a patient’s substance use history can have catastrophic consequences for that patient are not serving their patient’s best interests or adhering to the principle of “first, do no harm.”
Discrimination against patients with substance use disorders remains prevalent throughout the health care sector. Consider the story, reported by the American Association for the Treatment of Opioid Dependence, of a young mother who had been successfully maintained on methadone treatment for several years. While still in the hospital after delivering a healthy, full-term baby, the nurse caring for the mother came into the hospital room and threw a dose of take-home methadone at her, saying “feed this poison to your baby.” Behavior like this contradicts the claim that all health care providers do not discriminate against people with addiction. Additionally, in some states, taking methadone during pregnancy is not only grounds for removal of the mother’s children, but also a criminal offense, despite the fact that methadone treatment is the clinical standard for pregnant women with opioid use disorders.
Administrative Ease Versus Patient Rights
A common argument against 42 CFR Part 2 is that the confidentiality protections create a barrier to full integration of medical care. Certainly, there are many potential benefits to enhanced integration of behavioral health information into mainstream medical records. We agree that it is critical to optimize integration as much as possible while preserving patient choice. Given the previous examples of consequences patients have faced as a result of their substance use histories, patients should have the right to determine whether or not to disclose this information. Allowing patients to control who accesses their sensitive substance use information may create an additional administrative layer for the health care provider, but the case for administrative ease must not override the rights and best interests of patients. 42 CFR Part 2 does not block integration of addiction treatment information into mainstream medicine, it simply adds patient consent to the process.
Those who wish to ease confidentiality rules often present cautionary tales, for example that of a physician who unknowingly prescribes opiates to a patient with an opioid use disorder, pointing to 42 CFR Part 2 as the culprit for the medical error. However, the contention that 42 CFR Part 2 prevents a doctor from knowing her patient’s medical history is misplaced.
First, it ignores the fact that patients can consent to have their substance use information disclosed to their health care providers and included in their electronic health records. Second, and perhaps more troubling, it assumes that health care providers are totally reliant on electronic records to make clinical decisions, and absolves them from their responsibility to engage with their patients on a personal level. As any good clinician knows, differential diagnosis often depends on having a meaningful conversation with patients about his or her medical history and current health issues. Even if a patient has not consented to include their substance use history in the electronic health record, there is nothing that prohibits a doctor from asking about it and explaining the need for this information. Indeed, in the context of prescribing addictive narcotic medications, not doing so could be considered malpractice.
It is true that not all patients will disclose their substance use history, even when asked, and that in some cases this lack of disclosure could lead to sub-optimal clinical decision-making with potentially serious consequences. Ultimately, it is for the patient to weigh the potential harms of disclosure and non-disclosure, and to make the decision that is best for them.
HIPAA Is A False Equivalent
Those who advocate against 42 CFR Part 2 often argue that the Health Insurance Portability and Accountability Act (HIPAA), the federal law that provides a “floor” of privacy protections for health information, is sufficient to protect substance use patients’ privacy while also facilitating integrated care. This is simply not accurate. There are substantial differences in the way in which HIPAA and 42 CFR Part 2 deal with patient consent to disclosure, including when and to whom medical information can be shared, that have major implications for patients with substance use disorders.
Given the legal consequences that can be associated with substance use disorder, the differences in how patient information can be disclosed to law enforcement and civil litigants are of particular concern. 42 CFR Part 2 requires a special court order for disclosures of protected substance use disorder information to law enforcement and to judicial or administrative bodies (such as divorce and child custody proceedings). 42 CFR Part 2’s provisions require judges to make certain findings before ordering that a patient’s protected substance use information is disclosed, and require judges to protect patients’ confidentiality when their substance use information is disclosed. By contrast, HIPAA permits such disclosures in whatever manner is permitted by state law. As a result, HIPAA generally allows health care providers to disclose patients’ health information to law enforcement, judges, and parties with whom patients are engaged in legal disputes when providers receive a simple subpoena, judicial or administrative order, or even a discovery request. There is no requirement that the confidentiality of the health information be protected in the legal proceedings.
Another significant difference is the scope of permission for disclosure of patient information without consent. Unlike 42 CFR Part 2, HIPAA permits the disclosure of health information without patient consent for treatment, payment or health care operations. This “treatment-payment-health care operations” exemption allows widespread sharing of health information without patient consent in areas where other law does not create additional protections.
The implications of adopting HIPAA’s “treatment, payment, and health care operations” exemption for substance use information are enormous in light of how broadly HIPAA defines each of these terms. Under HIPAA, treatment means not only directly providing health care but also coordinating and managing health care and related services, including with a third party. HIPAA’s definition of payment is even broader, and includes collection activities, reviewing health care services for medical necessity, utilization review, disclosure to consumer reporting agencies, and more. HIPAA’s definition of health care operations is perhaps the broadest and least transparent, including activities such as underwriting, business planning and development, fraud and abuse detection, fundraising, and quality assessment. Thus, the statement that HIPAA’s “treatment, payment, and health care operations” exception only allows health care providers to access patient information in order to provide them care is incorrect. These widespread disclosures significantly increase the likelihood that such information will be disclosed to others in a way that could be harmful to the patient, such as to insurers, employers, and law enforcement.
The Current Lack Of Legal Protection And A Path Forward
Even with the confidentiality law in place, we see the real consequences of disclosure in practice every day. The reality is that there are few meaningful legal protections guarding against systemic discrimination towards people with substance use disorders. The Americans with Disabilities Act, which prohibits employers from acting adversely against employees or potential employees because of their disabilities, contains an exception for “current illegal drug use” that effectively makes it legal for an employee to be fired or demoted for seeking treatment for a substance use disorder involving illegal use. This exemption also extends to the Fair Housing Law, which permits the denial of housing on the basis of current illegal drug use. Moreover, the housing prohibition extends beyond individuals’ current drug use to include people in the early phase of substance use disorder recovery if the housing provider (including government subsidized housing) determines that this makes them a “threat to health or safety.” Given the lack of other legal protections for people with a history of substance use disorder, protecting patients’ right to consent prior to disclosure of their medical records is critical.
There is one point on which the authors of this Blog post agree with the authors of the aforementioned Health Affairs Blog: what is needed to most effectively maximize access to substance use disorder treatment and promote recovery is legal protection from discrimination and criminal consequences. Until this happens, there is a very real danger of serious negative consequences for people who disclose their history of substance use disorders, and consenting to provide this information to a clinician is an act of faith on the part of the patient. For clinicians to fulfill their oath to “first, do no harm,” it is critical that they learn and acknowledge the risks that patients face when they disclose this information in order to truly deliver quality care while safeguarding their patients’ trust.