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Why Aren’t Mentally Ill Americans Invited To This Week’s Hearing On Their Own Privacy Rights?

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"Why Aren’t Mentally Ill Americans Invited To This Week’s Hearing On Their Own Privacy Rights?"

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This Friday, House Republican Tim Murphy is holding a hearing on whether the Health Insurance Portability and Accountability Act (HIPAA) “helps or hinders patient care and public safety” in the context of mentally ill patients. The hearing, a followup to his hearing last month in which he reiterated false claims about mental illness and violence, will notably not include a single mentally ill witness. Why not? Because, according to Tim Murphy, mentally ill people are not “competent” to testify about how a relaxation of HIPAA rules would affect their own lives.

Instead, the hearing will revolve around family members, psychiatric professionals, and public health representatives, making decisions with potentially very serious implications about medical privacy for mentally ill people.  This event is occurring in a larger context of national panic about mental health and violence — with few public figures brave enough to stand against the tide, as Al Franken recently did, and warn against continued stereotyping and stigma of mentally ill people.

Rep. Murphy’s claim is that HIPAA “may interfere with the timely and continuous flow of health information between health care providers, patients, and families, thereby impeding patient care, and in some cases, public safety.” In other words: mentally health patients shouldn’t receive patient confidentiality, because mentally ill people are violent, and it’s in the best interest of society overall to lift privacy restrictions that limit the disclosure of their health information. This is part of a larger attack on HIPAA rights for mentally ill people with potentially grave implications that’s wrongheaded from a number of perspectives.

Despite the public perception that mentally ill people are violent and dangerous — one fostered by dangerous pop culture depictions, scaremongering media, and public comments by politicians and other leaders — it’s just not the reality. In fact, the link between mental illness and violence goes the other way round; mentally ill people are far more likely to be the victims than the perpetrators of violence. They also experience sexual assault, financial exploitation, and discrimination at very high rates because they’re viewed as easy victims. Of those who do commit violence, the vast majority engage in acts of self-harm like suicide, not violence against others.

The vast majority of violent crimes are perpetrated by people without mental health conditions. And, in unsurprising news, the largest factors involved in a violent crime that does involve a mentally ill person are lack of access to treatment (a perennial problem in the US) and drugs, which some patients may turn to for self-medication when they cannot get care through other means.

The larger issue here is that mentally ill people tend to be vulnerable and marginalized. And if public health is a concern, which well it should be, the focus should be on ensuring that people with symptoms of mental illness have access to the treatment they need without stigma, financial obstacles like high copays, or social risks like job loss or ostracization. That’s part of what HIPAA offers to patients: with privacy protections in place, people can seek treatment and guidance without fear of being outed, which makes it safer to get mental health care. Patients experiencing psychiatric crisis, as well as those who are extremely frightened about seeking care, rely on that privacy to help them gain the confidence to walk into a doctor’s office.

That’s why proposals to erode HIPAA should be viewed with alarm. In the wake of New York’s troubling gun bill, a number of psychiatrists articulated that alarm, pointing out that patients afraid of being reported to authorities — or put on a national registry — are not going to be as frank with their care providers. They could conceal suicidal or violent thoughts during counseling sessions instead of addressing them due to fears that their private information might be shared with their families or officials. This would be utterly contrary to the goal of providing measured psychiatric treatment intended to help a patient manage a mental health condition, and, in the long term, it would undoubtedly undermine public safety overall, which is precisely the opposite of what laws like this one are claiming to do.

Georgia, alarmingly, has upped the stakes considerably by extending the powers of forced psychiatric holds and commitments, striking even more fear into the hearts of patients who need mental health services. People who recognize that they need help and want to reach out are less likely to do so when they’re aware that care providers might be forced to report on their sessions to government officials, or could have broader powers when it comes to committing them.

These proposals to relax medical privacy laws, in other words, actively endanger patients with mental health conditions.

In the case of the HIPAA hearing, the discussion also highlights the tension between autonomy for mentally ill patients, who deserve the right to private medical treatment, and communities like parents who demand more information. In the wake of rampant violence involving mentally ill suspects, parents often complain that they weren’t informed or were powerless to do anything, creating a dangerous scenario where parents are effectively demanding the right to control adult children, and to be familiarized with their private medical information. But health care is a human right, and privacy is a civil right. Restricting either is a grave disservice to mentally ill patients. And those who don’t support human rights for mentally ill people may want to consider the consequences of these restrictions, since limiting access to safe, private care could actually endanger public health even more.

Mental health absolutely is a public health issue, with an estimated one in four people experiencing symptoms of mental illness each year, and many of them struggling to get the treatment they need. It’s definitely time to talk about improving access to mental health services in the United States. But demonizing mentally ill people isn’t the right approach to be taking.

Mental health advocates are calling for the inclusion of mentally ill people in the Congressional hearing, citing the longstanding disability rights slogan “nothing about us without us.” At this hearing, as in the larger national conversation about mental health, it’s critical for the voices of mentally ill people to be represented; and for people to step outside outdated narratives about mental health and violence to focus on improving access to health care.

Our guest blogger is s.e. smith, a writer and editor based in Northern California with a journalistic focus on social issues, particularly gender, prison reform, disability rights, environmental justice, queerness, and class.

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