Much to Austin’s and my surprise, we’ve learned that recent legislation introduced in the House of Representatives would, if enacted, restore research access to Medicare and Medicaid data on substance use disorders. Indeed, the relevant part of the bill is a slightly tweaked copy of language I floated last July here at TIE to accomplish the same goal.
This is really encouraging. As Austin and I have argued again and again, the CMS data-scrubbing impedes research into substance use disorders and into any conditions associated with such disorders, including HIV/AIDS. Yet such research is especially critical today given the opioid epidemic and a rash of HIV infections in rural areas.
Representative Tim Murphy added the relevant language last November during the subcommittee mark-up of a mental health bill that he’s sponsoring:
(i) CLARIFICATION.—In applying this section and part 2 of title 42 of the Code of Federal Regulations, the Secretary shall be considered a ‘‘program director’’ and not a ‘‘third party payor’’, as such terms are defined under such part, for purposes of disclosing patient identifying information to qualified researchers. In carrying out the previous sentence, the Secretary shall, by not later than January 1, 2016, and subject to privacy restrictions under such part, restore access to qualified researchers of patient identifying information held by the Centers for Medicare & Medicaid Services for the programs under titles XVIII and XIX of the Social Security Act.’’
The Murphy bill wouldn’t solve every problem associated with the data-scrubbing. After proposing the language, we learned that all-payer claims databases also can’t get the data they need. Not only is CMS withholding data from the databases, but private payers are starting to do the same. The Murphy bill doesn’t change the status quo for those private payers.
But the legislation would fix the problem with the Medicare and Medicaid data. It’s not the only fix in the works: SAMHSA intends to propose a rule that might also restore research access to data on substance use disorders. That proposal, though, is languishing in bureaucratic limbo at OMB. If it runs into problems, Congress may be the only show in town.
So this counts as progress. We’re not home yet, to be sure. The Murphy bill has made it out of subcommittee, but it’s controversial and it’s not clear that it’s going anywhere during an election year. Plus, its Senate counterpart and a Democrat-sponsored alternative don’t contain the same fix.
From our perspective, though, it’s easier to argue for cutting-and-pasting from an existing bill than to argue for lifting language from a blog post. If SAMHSA doesn’t fix the problem, maybe Congress will.