Today, I am hopeful. The 21st Century Cures Act was signed into law this month. Its measures are designed to speed the development and approval of novel medicines and to unravel our national opioid epidemic. However, this isn’t what makes me hopeful.
Folded neatly into this act is a salve for families who struggle in caring for loved ones with serious mental illness. It is a godsend, and it is surgical in its bureaucratic approach. Almost 10 million adults in the United States have been diagnosed with serious mental illness – 1 in 30 Americans. It includes the disorders of schizophrenia, bipolar disorder and major depression. It does not discriminate.
It has hit my family, and it is not fun. It is draining to have a family member suffering from a serious mental illness. So, why would the medical establishment be OK with making families suffer more?
The Health Insurance Portability and Accountability Act ensures that, when you are a patient, your medical records are kept secure and confidential – out of the way of prying eyes. But what happens when you don’t think there is anything wrong with you? What happens when your family serves as your primary caregiver and you think they are just being a pest? Both of these are very real and all-too-frequent occurrences.
The term “anosognosia” applies to the person who doesn’t think they have anything wrong with them. The label applies to half of those with schizophrenia and almost half of those with bipolar disorder. In many cases, HIPAA prevents caregiving families from facilitating health care for these loved ones.
What makes me hopeful, both as a family member of someone with serious mental illness and as a health clinician, is that hidden away in this 21st Century Cures Act exists a provision which directs the government to clarify how medical providers can involve families. This is truly a beautiful thing.
In too many cases have providers shut out families. Sadly, sometimes this lack of communication leads to the death of loved ones because medical providers choose not to be receptive to important insights only the family is able to provide. This includes reports of which medications have worked best for the patient or even whether this loved one has health insurance.
Make no mistake: This avoidance of communication for fear of liability has led to patient harm. It is a troublesome dilemma to choose between one’s own liability and the wellness of a patient.
There is consensus that change is needed, yet there is a great deal of debate around how to achieve this change. Rep. Tim Murphy, R-Pa., the psychologist and congressman who authored this portion of the act, believes that simply clarifying the rules and re-educating providers is enough. Rep. Doris Matsui of Sacramento is an advocate of simplifying the rules so that they are easier to follow. Other parties want to leave HIPAA as it is and believe they can encourage medical providers to reach out to families without degrading patient rights.
Whatever the outcome, our solution must be two-fold. One: The solution must be black-and-white and absolutely unmistakable. Do not leave any opportunity for misinterpretation. HIPAA works as well as it does because it is simple. Two: Severely limit the scope of any change. A very basic solution would generate an exception to HIPAA only in cases of serious mental illness. This would permit medical staff to consult family or existing caregivers without opening themselves to lawsuits.
This opportunity will help us care better for those families and loved ones who are suffering these disorders. I am hopeful we can make this right.
Jake Kopperman of San Francisco works at the East Bay AIDS Center and is completing his master’s of social work through the University of Southern California. Contact him at firstname.lastname@example.org.