Comments to HHS on possibly altering HIPAA mental health privacy rules

The Department of Health and Human Services (HHS)’s Office for Civil Rights (OCR) put out a “Request for Information” on possibly changing HIPAA privacy rules for people with “serious mental illness” and substance use disorders. The docket can be found here. The comment period is now closed.

The changes they are thinking about – this is not a proposed rule yet, but concerning – are encouraging doctors, to share more health information in “emergencies” and expanding caregiver/other involvement in people’s treatment.

I think this is bad for many reasons, which I hope to have indicated in my comments, though I broke them down a bit to be more convincing. I addressed “b. Promoting Parental and Caregiver Involvement and Addressing the Opioid Crisis and Serious Mental Illness.” 

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I am an autistic, LGBTQ+ person with chronic pain and mental health disabilities (referred to as SMI in this RFI). I want to focus on section b) Promoting Parental and Caregiver Involvement and Addressing the Opioid Crisis and Serious Mental Illness.

My abuser, my father, may not have been the source of my bipolar disorder, but he was assuredly the source of my Complex Post-Traumatic Stress Disorder (C-PTSD) and generalized anxiety. The last thing I’d want would be for someone I’ve tried to shut out of my life in every way possible to be able to access my protected mental health records.

For some people, they have not yet been able to escape the source of their trauma – their abusers. These abusers would have far easier access to their victims’ protected health information (PHI) if OCR decides to move forward with this rule.

The opioid issue is a serious one, but has significant nuance to it. And substance abuse certainly co-occurs alongside mental health concerns at high rates. But the solution is not to provide greater access to PHI to family members, caregivers, and a nebulous, unspecified “others” category – which could mean anyone a mental health professional deems appropriate.

So my response is a resounding “no.” There are already HIPAA exceptions in place. We may be still reliant on abusers for food or money, and potentially granting them access to our PHI will not help us seek or engage in treatment. It would be active sabotage. People will lose trust with their doctors and other mental health professionals. We may become afraid of attempts to coerce us into institutionalization.

And as someone who grew up the victim of child abuse, I don’t believe all families protect and care for minors well. I don’t think parents need easier access to their children’s health information, which they already have a great deal of access to. This could disproportionately impact marginalized youth, such as LGBTQ+ kids.

Privacy does not evaporate when you are mentally ill or have a substance abuse disorder; it becomes all the more important, and I urge OCR to keep this in mind.

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Views expressed above are my own. 

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