The insanity of withholding data on substance use disorders

In a commentary for the Proceedings of the National Academy of Sciences, Ellen Meara and Jon Skinner offer their thoughts on the Case and Deaton study. Here’s the last paragraph:

Case and Deaton do not provide a complete solution to the mystery of why middle-aged people in the United States are facing rising mortality and morbidity over time; these are aggregate statistics, and as Case and Deaton have shown in their other research, the solution is likely to be found by studying individuals and their health-related behaviors. Ironically, a new interpretation of rules from the Centers for Medicare and Medicaid Services have made it even more difficult to study addiction trends, which appear to play an important role in growing mortality over the period. In response to privacy concerns by patient advocates, the Centers for Medicare and Medicaid Services now routinely deletes all hospital and physician records related to drugs or alcohol, making it impossible for researchers to document changes over time in, for example, emergency room admissions for drug overdoses. Case and Deaton have clearly identified a serious public health problem, and we will need all of the resources of population-based epidemiology and clinical-based insights to solve it.

Yes, yes, a thousand times yes.

Austin and I have been raising alarms about CMS’s new policy for months. As we wrote at the New England Journal of Medicine back in April, the timing of the new CMS policy “could not be worse. Just as states and federal agencies are implementing policies to address epidemic opioid abuse … , we are flying blind.” Over at Vox, Dan Diamond has a terrific piece digging into the issue.

The problem runs even deeper than we appreciated. The states that have been hit hardest by the heroin epidemic—Vermont, New Hampshire, and Massachusetts—have built all-payer claims databases (known as “APCDs”) to better understand their states’ health-care systems. In theory, those databases contain complete claims data from any insurer that’s paying claims in the state, including Medicare and Medicaid.

That comprehensive data could allow states to get a handle on what’s driving the shocking increase in mortality that Case and Deaton observe. Under the new policy, however, CMS isn’t just withholding substance use data from researchers. CMS is also withholding the data from APCDs. (Austin and I are still nailing down the full extent of the APCD data scrubbing. We’ll update as we learn more.)

Equally troubling, the federal regulations that prohibit CMS from sharing data on substance use disorders also apply to any third-party payers, including private insurers and self-insured employers. Once those private payers start scrubbing their data, these supposedly comprehensive state databases will have no data on substance use disorders at all.

This is appallingly shortsighted. Hundreds of thousands are dying and we don’t fully understand why. It’s crazy to deny information to the states that could help them understand what the hell is killing all these people. The federal government says it’s got a fix in the works, but I’m getting more pessimistic by the day. I don’t sense much urgency around the issue.

As Case and Deaton write, “[t]he mortality reversal observed in this period bears a resemblance to the mortality decline slowdown in the United States during the height of the AIDS epidemic, which took the lives of 650,000 Americans (1981 to mid-2015).” It took us years to wake up to the enormity of AIDS, years that could and should have been spent pursuing a cure. Let’s not repeat that ugly history.


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