Congress should listen to addiction patients — not corporate interests — about confidentiality

America has an addiction problem: 28 million Americans use illicit drugs and 65 million are considered binge or heavy drinkers, which can lead to numerous health problems. More than 115 Americans die every day from opioid overdoses. Add in those who die as a result of other drugs or alcohol and the number skyrockets to more than 400 a day.

Yet less than 10 percent of people with addiction will receive treatment for it. This constitutes a public health crisis of epic proportions — and one that has been present for decades.

If policymakers want to address this crisis, they must focus on a basic but essential question: How do we encourage people with addictions to discuss their problematic substance use with the medical community? In seeking answers to that question, policymakers would be wise to listen to those closest to the problem — patients and people in recovery.

Unfortunately, many legislators in the nation’s capital are ignoring the voices of people directly affected by people with substance use disorders. The Overdose Prevention and Patient Safety Act (H.R. 6082) is an example of a “solution” that represents the interests of corporate entities and those who would profit off the information about people in treatment or recovery.

The legislation, which has passed the House of Representatives and is now under consideration in the Senate, would take away a patient’s right to give permission before information about his or her substance use treatment is disclosed to a broad range of individuals and entities for the purposes of treatment, payment, and health care operations.

As a physician and former director of the Center of Substance Abuse Treatment, part of the Substance Abuse and Mental Health Services Administration (SAMHSA), I have spent my career working to bridge the treatment gap. My fierce opposition to changing the privacy protections contained in federal policy known as 42 CFR Part 2 (or Part 2 for short) stems from a fundamental belief that we must do everything possible to encourage individuals with substance use disorders to seek treatment. Proposals to replace Part 2 with the much less stringent protections provided by the Health Insurance Portability and Accountability Act (HIPAA) would discourage individuals from seeking treatment by weakening privacy protections while also compromising the security of individuals’ private medical information.

On the confidentiality front, time has proven that people being treated for substance use disorders need additional privacy protections. Every day I hear stories of health status being used against people with devastating consequences — from loss of children in divorce and custody battles to blatant discrimination in terms of employment opportunities and access to housing and public benefits.

No other medical condition evokes the same societal prejudice or sanctions as addiction. So why would anyone suggest that greater confidentiality protections aren’t needed?

When it comes to security, HIPAA and the Overdose Prevention and Patient Safety Act allow sharing private information with “health care operations” as part of efforts to improve clinical coordination. What exactly constitutes a health care operation? Shockingly, the definition is both broad and vague and includes activities such as underwriting, resolving internal grievances, and fundraising. This range of allowable activities makes it difficult to explain to patients the risks and harms that could come from the disclosure of their substance use histories.

At a time when we seem to hear about new data breaches every day, I believe it would constitute a form of policymaker malpractice to allow for more widespread sharing of information about treatment for substance use. Once that information is shared and stored in vast databases, there is no way to put the genie back in the bottle.

It’s no surprise that the burgeoning electronic health record industry is strongly in support of this legislation, as are the insurance industry and the even large provider associations. Their bottom lines surely will benefit if this legislation passes, so it is no surprise that these corporate entities have invested heavily in lobbying for this bill.

Those who are vulnerable and at risk for harm from the disclosure of their substance use histories are not welcomed in this debate.

So what about the patients, the close to 90 million Americans struggling with substance use? And the more than 22 million Americans in long-term recovery from addiction? Many of them are deeply opposed to this legislation. Patient concerns and views are being cast aside in favor of corporate interests and administrative ease.

If policymakers want to turn the tide on this national health epidemic, they should start with the premise that they can and must make the situation better by focusing on pragmatic, real-world solutions that improve clinical coordination and patient outcomes. Weakening the current protections for patient privacy contained in Part 2 will not fix what is broken. Instead, it will drive patients away from addiction treatment.

H. Westley Clark, M.D., is the dean’s executive professor of public health at Santa Clara University in Santa Clara, Calif., and a physician specializing in addiction psychiatry. He is the former director of the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment.