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Last week, an IPR story I wrote ran on the national broadcast of Morning Edition. That piece was about how the healthcare privacy law known as HIPAA can pose an obstacle to care for vulnerable adults.
We heard from a lot of you about that story, and thought we’d share some of that feedback.
But first, a quick recap:
We followed Laurie, a 74-year-old retiree, as she described being shut out of updates when her son landed in emergency rooms across different hospitals. Even though she’s his sole caretaker, privacy rules under HIPAA prevented providers and insurers from sharing information without her son’s consent — a safeguard meant to protect patient trust and autonomy.
Caregivers can be more involved, but the options are limited. Disclosure forms help, but they’re not always signed in urgent moments. Guardianship is an option, but it’s a long legal process that requires a court to determine the patient can’t care for themselves.
Advocates said this can change though and cited better provider training and a shift away from fear-based HIPAA interpretations could help families stay informed without sacrificing privacy.
In the end, it was a story about the balance of an important privacy policy and real-on-the-ground care.
After the piece aired on NPR, we heard from people across the county — from New York to California to Utah.
One professor from California State wrote in to tell us about how his classroom refers to the fear of violating private protections as “HIPAANoia.” A father from Utah wrote to me saying the report resonated with his own experience taking care of his adult son.
And Kate Lynnes wrote in from Muskegon.
“As a person with bipolar disorder I have personal experience with this issue,” she wrote. “I was disappointed, however, you did not address two tools that can be used to facilitate communication with caregivers and maintain the patient’s participation in the treatment of their mental illness.”
The first tool is a HIPAA release form, which allows the sharing of medical information of the patient’s choosing.
“One problem with current waiver process is one must be signed for every doctor,” Lyness wrote. “This obviously doesn’t work if your loved one is in a psychotic episode in the hospital. Rather than eliminating HIPPA protections for a class of patients, a less draconian fix would be a change to the law which allows a blanket waiver for a specific illness and family member or trusted advocate.”
The second tool she brought up was that of advanced psychiatric directive – where patients can specify their preferences of mental health treatment and care – which she noted we unfortunately do not have in Michigan.
In an effort to broaden the conversation, I called her and wanted to share part of our conversation.
Lynnes told me that privacy and patient protections are especially important in the last few years when there appears to be a bipartisan softening on involuntary reinstitutionalization.
That most recent (and potentially powerful) example of this trend is President Trump’s recently signed executive order on homelessness and mental health that, as KFF Health News reports, “encourage states to ban public drug use, remove unhoused people from public spaces, and broaden civil commitment laws to permit involuntary psychiatric civil commitments in more circumstances.”
Last week, I reported on how that order is already affecting northern Michigan, after the Department of Housing and Urban Development changed its Housing First criteria to prioritize transitional housing and treatment programs instead.
But, like Lynnes mentioned, the trend is bipartisan – like in California where Gov. Gavin Newsom signed Senate Bill 43 which “loosens long-standing rules about who is eligible for involuntary treatment” or in New York City where Mayor Eric Adams enacted a new policy to make it easier for homeless people to be forcibly hospitalized.
“Schizophrenia and bipolar disorder are lifelong, chronic illnesses that cannot be cured,” Kate wrote in her initial email. “If the patient doesn’t have purchase in his or her treatment, the likelihood of them staying in treatment is much lower. Removing HIPPA protections would be one more way to further marginalize persons with serious mental illnesses.”
This kind of feedback serves to broaden the work we do at IPR – and also we just enjoy hearing from listeners.
You can always tell us what you think about our coverage, or suggest stories we should be covering. Write to us at talktoipr@interlochen.org.
