bendy joints, fragile life, and how the denial of effective care can kill us

Disabled people often rely on an intricate but fragile network of supports, services, and medical care to survive. Sometimes the fabric of supports and lifesaving medical care bends like my joints, stretching far like the faulty collagen in my body. Sometimes it does not bend, but tears, severing the thread of life.

Carrie Ann Lucas, disabled attorney, parent, and pioneering activist, was 47 years old. She had a rare form of muscular dystrophy, but she died of complications from a treatable condition because UnitedHealthCare refused to authorize a medication that she needed. I never knew her, but I knew of and valued her work.

And it is not just Carrie Ann Lucas.  I am too tired to find all the names, all the capricious insurance denials, all the bias in medical professions. It is all kinds of people, disabled people of all stripes. I wish I knew more of their names and stories. If this was Leverage, there would be people tackling the holes Robin Hood style, case by case. This is not Leverage. We have direct action and policy still. We should use it:

There is an institutional bias in our system of supports and services. Sometimes that kills people. There is a long waitlist for SSDI appeals. The death toll is mounting. People get taken off their benefits without warning. Sometimes that kills people. Insurance companies often won’t pay for the most effective treatment. Sometimes that kills people, like Carrie Ann Lucas. 

I am disabled, low-income, and on state Medicaid. I am struggling to get benefits. Republicans keep trying to kill the Affordable Care Act. I am mere peoples’ generosity from being forced to give up my cat, move in with relatives, and suffer cascading mental health crises that could end badly. I will be 26 soon. Sometimes I wonder if or when my friends and I will die early, and within what scenario.

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.