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As President Joe Biden begins his term, his Department of Health and Human Services (HHS) has the opportunity to halt Trump-era efforts to weaken the medical privacy rights of people who use drugs.
A regulatory freeze imposed by Biden’s chief of staff on inauguration day effectively returned to new HHS leadership for review a notice of a proposed rule. The proposal suggested that certain personnel in the health care industry should be able to make unauthorized disclosures of patients’ protected health information to the family members of overdose survivors and people with substance use disorders (SUD). Advocated by the Trump administration, the proposal has in the past met criticism from patients and advocates.
On January 21, HHS Office of Civil Rights (HHS-OCR) published a Notice of Proposed Rule-Making to expand exceptions to patient privacy under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) in the name of improving care coordination, particularly for people with SUD.
The change would effectively encourage health care entities to disclose SUD patients’ protected health information by expanding who can disclose and for what reason—from medical professionals using “professional judgement” to all health-related staff acting in “good faith”—as well as when, from situations of “serious and imminent threat’’ to those of a ‘‘serious and reasonably foreseeable threat.’’
The revised standards for disclosure proposed in the rule would “have serious downstream consequences,” Jacqueline Seitz and Deborah Reid of the advocacy organization Legal Action Center told Filter. In 2020, Congress opened up the possibility for certain health organizations “to share and re-share SUD treatment records pursuant to the HIPAA standard”—that is, the standard being amended by the proposed rule—“so long as the patient signs an initial consent form.” It should be noted some SUD records would remain protected from the proposed rule, if finalized, due to other more-stringent SUD patient privacy laws, like 42 CFR Part 2.
In the Notice, HHS-OCR says that current policies deter effective communication between care providers and patients’ loved ones.
Disclosing entities have reported to HHS-OCR that they are “reluctant to disclose information to persons involved in the care of individuals,” while “[n]early all” the patients’ family members who responded to HHS-OCR’s 2018 Request for Information “agreed that in many cases more information related to an individual’s […] SUD should be disclosed to family caregivers,” having “shared personal stories about the devastating consequences—such as suicide, missed appointments, homelessness, and lack of continuity in treatment and medication—that occurred because of a lack of information disclosure.”
The support of loved ones and caregivers, says HHS-OCR, “is key to helping” SUD patients. One 2010 study from the Caribbean island of Antigua found a relationship between family involvement in a patients’ stay at an inpatient rehabilitation program and retention in treatment, while another during the 1990s in New Hampshire suggested financial support and time spent providing care by family members was associated with reduced use. It should be noted that neither retention in treatment nor reduced use guarantee reduced harms.
Commenters flagged the “unintended consequence” of releasing “sensitive information” to kin who may be abusive.
HHS-OCR also recognized in the Notice the staunch opposition of people impacted by the rule changes. “[P]atients or privacy advocacy groups almost universally opposed modifying the Privacy Rule [under HIPAA] to expand permitted disclosures of information related to […] opioid use disorder or other SUDs.”
Commenters flagged the “unintended consequence” of releasing “sensitive information” to kin who may be abusive towards the patient. Supporting concerns about the possibility of “abusive parents or guardians gaining access to a minor child’s [protected health information],” a 2017 study showed that people who were abused as children were more likely to experience an overdose and to initiate opioid use at a younger age. When it comes to concerns that an abusive partner may gain access to overdose or SUD information, there’s evidence indicating that, in some cases, experiencing intimate partner violence is associated with having been ever hospitalized for drug use, according to a 2019 study.
Similar to other battles over previous private rule changes regarding law enforcement’s access to treatment records, the 2018 commenters fear that parents’ more liberal access to their minors’ protected health information may have a chilling effect. “[I]ncreasing parental access would inhibit a child from seeking the health care he or she needs, especially with respect to sensitive health conditions,” as the comments’ sentiments are summarized by HHS-OCR.
An HHS spokesperson did not respond to Filter‘s request for comment by publication time.
Efforts to make this policy change seem to have gotten off the ground in 2017 with the recommendations of Trump’s Commission on Combating Drug Addiction and the Opioid Crisis, spearheaded by conservative ex-Governor Chris Christie of New Jersey. According to STAT News, families of SUD patients were lobbying the then-governor.
“Providers and other advocates,” wrote the Commission, “have found that certain privacy regulations, while well intentioned patient protections, act as a barrier to communication between providers, can make it difficult for family members to be involved in a loved one’s treatment, and limits the ability to use electronic health records to their full potential.”
In light of the recommendation, a bill, Overdose Prevention and Patient Safety Act, sought to encourage the disclosure of protected health information the families of overdose survivors. It was first reviewed, to no avail, by Congress in 2018, and once again in 2019, only to die.
Representative Frank Pallone Jr of New Jersey was on the House committee reviewing the bill, and laid out his dissent in the committee’s report. He warned it “increases the odds that fewer individuals with [opioid use disorder] enter and remain in treatment due to the weaker privacy protections afforded to a patient’s substance use disorder (SUD) records under this bill.”
In 2018, HHS sought public comment on rule-changes in line with the Commission’s recommendation, to which it received over a thousand comments voicing both support and opposition. After considering this input, it’s bringing a new proposal to the public.
HHS-OCR even seems to be open to pushing the boundaries of the current proposal that seeks to loosen rules. In its request for comments from the public, the office poses one question that seems to trample patients’ rights. It is interested in hearing feedback about whether health care organizations should be able to disclose protected health information to family of a patient who is capable of decision-making and has stated they do not consent to such disclosures—if the organization has a “good faith belief that the use or disclosure is in the individual’s best interests, in any situations outside of an emergency circumstance.”
A hypothetical question additionally seems to threaten drug users’ bodily autonomy: “Are there examples related to individuals who have regained capacity after having been formerly incapacitated, such as where an individual recovering from an opioid overdose leaves the hospital against medical advice or leaves a residential treatment program?”
For the LAC advocates, the consideration is alarming. “HHS is asking for comments on whether to let medical providers override a patient’s decision-making authority and adopt a much more paternalistic attitude towards patients who use drugs or alcohol. Due to stigma and the criminalization of substance use, it is easy to foresee ways that this would end up harming patients, who may end up losing their housing, employment, child custody, or other rights if the covered entity shares information against their wishes,” said Seitz and Reid. “It is also easy to foresee ways that this could disproportionately harm certain patients more than others – patients who are Black, indigenous, other people of color, undocumented patients, patients with concurrent mental health diagnoses, or patients with more highly stigmatized substance use histories (e.g., injection drug use).”
Biden’s administration could reverse course, but that’s no guarantee.
“We are not certain of the ultimate disposition of this [proposed rule]. Following the January 20, 2021 Regulatory Freeze Pending Review Memorandum from the Biden Administration and overall rulemaking procedures,” said Seitz and Reid. “The Administration could decide to extend the comment period for the NPRM or withdraw the NPRM from consideration.”
Photograph of a doctor and a patient by Zackary Drucker for VICE’s The Gender Spectrum Collection via Creative Commons 4.0