Relaxing patient privacy protections will harm people with addiction

Relaxing patient privacy protections will harm people with addiction
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The nation is in the midst of a staggering opioid epidemic. Over 115 people die from an overdose each day – and all signs indicate that the problem is getting worse. Unfortunately, of the more than 20 million Americans who need treatment for addiction, it’s estimated that only about 7 percent of them will actually receive specialty care. Ending the opioid crisis will require a multifaceted and sustained public health response – but increasing access to affordable quality treatment and encouraging patients to seek and sustain recovery must be the first priorities.

We would expect policymakers and medical providers to do everything possible to increase the number of people entering treatment, not take actions that will discourage individuals from seeking treatment. But unfortunately, that’s exactly what the Overdose Prevention and Patient Safety Act would do.

Despite its benevolent title, this legislation, which has already passed the House of Representatives, would jeopardize the confidentiality of substance use treatment and discourage patients from seeking the care they need. 

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At issue is a regulation known as 42 CFR Part 2 (“Part 2”) that was enacted more than 40 years ago to establish added confidentiality protections for people seeking addiction treatment. Supporters of the new legislation want to weaken those enhanced privacy protections, arguing they enable individuals to hide their treatment from doctors and, in doing so, complicate efforts to not only deliver care but also promote integration, particularly through the use of electronic health records. Instead, the bill’s supporters want the less stringent privacy standard contained in the Health Insurance Portability and Accountability Act (“HIPAA”) to apply to addiction treatment. 

 

So why do individuals being treated for substance use disorders need an added layer of privacy protection when it comes to their medical records? 

When it comes to addiction, stigma and discrimination are pervasive and the unauthorized disclosure of an individual’s health status could result in disastrous consequences, including loss of employmenthousingpublic benefits, and even custody of one’s children.

The same simply cannot be said of somebody living with – and perhaps struggling to manage – their diabetes or high blood pressure, two prevalent diseases that, like addiction, require both behavior change and often the use of medicine to manage the disease. Substance use disorder patients need Part 2’s stronger confidentiality protections precisely because they face more significant discrimination and other harmful consequences than people living with other illnesses.

Of course, people living with an addiction should share that information with their trusted medical providers. But under the current law, individuals have the right to prevent that information from being shared more broadly -- with third-party vendors and marketing entities for example – precisely because the consequences of an unauthorized disclosure are so significant.

In the era of “big data,” once the information in the system, there is no way to put the genie back in the bottle when it comes to privacy. Information that was legally gathered at the outset can take on a new and dangerous life when it is accessible to others motivated by commercial and financial objectives. And as we know all too well, data breaches happen. In fact, there were a record number of health data breaches reported last year.

Part 2 provides safeguards for patients against all of these disastrous results. HIPAA does not.

That’s why patients are genuinely terrified of this legislation. As news begins to spread about the potential legal changes, stories are already circulating about patients who are unilaterally deciding to curtail or end their treatment. That tells you how intense the fear is when it comes to the consequences of broader disclosure of medical information related to addiction treatment. Individuals are literally putting their desire for information autonomy over their medical well-being.

At a time when getting more people into treatment is a critical priority, the government should be taking steps to facilitate access and patient confidence in care. But the Overdose Prevention and Safety Act would do exactly the opposite. If enacted, it will lead to a decrease in individuals seeking and sustaining treatment at a time when the nation needs to be making progress against the opioid epidemic, not taking steps backward.

That’s why more than 100 leading patient and recovery advocacy organizations are opposed to this legislation.

If healthcare professionals and policymakers are guided by the Hippocratic oath to “first, do no harm,” then they must find better ways promote appropriate sharing of sensitive medical information. When it comes to curbing the opioid crisis, there are no quick fixes. But we know this for sure – eliminating Part 2 protections will result in fewer people seeking treatment and, ultimately, more overdose deaths. Surely, we can do better. 

Deborah Reid is a Senior Health Policy Attorney at the Legal Action Center, a national nonprofit legal and advocacy organization that works to protect the rights of people with addiction, criminal justice involvement, and HIV or AIDS. Mark Parrino is the President of the American Association for the Treatment of Opioid Dependence, which represents over 1100 outpatient addiction treatment programs nationally, and is the largest association of providers of medication assisted treatment in the country.