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Looks like some wealthy GOP donors finally got another of their wishes answered by congressional Republicans and the Trump administration: The Department of Health and Human Services has finally shuttered the National Guideline Clearinghouse (NGC), a project of the Agency for Healthcare Research and Quality (AHRQ). It was a database of best practice medical guidelines for all sorts of treatments, but it had long been targeted for defunding by Republicans at the behest of very wealthy donors because it sometimes went against their interests. Can you even imagine such a thing?


Like most Americans who aren't physicians or in the medical or insurance biz, we'd never even heard of the National Guideline Clearinghouse, which is now little more than a "We're Closed" sign on the internet, with some remaining links about what it used to do. In a terrific 'splainer at The Daily Beast, the Sunlight Foundation investigator Jon Campbell sums up what the thing did:

Medical guidelines are best thought of as cheatsheets for the medical field, compiling the latest research in an easy-to use format. When doctors want to know when they should start insulin treatments, or how best to manage an HIV patient in unstable housing — even something as mundane as when to start an older patient on a vitamin D supplement — they look for the relevant guidelines. The documents are published by a myriad of professional and other organizations, and NGC has long been considered among the most comprehensive and reliable repositories in the world.

Ah, but there were problems, you see. Although it was considered a vital tool by healthcare providers and others, the NGC also made some powerful enemies. It applied strict standards for what counted as best practices, so sometimes it wouldn't push stuff medical device manufacturers, medical specialist lobbying groups, or Big Pharma really thought would be the best practices for their bottom line:

That gatekeeping role has sometimes made AHRQ a target. The agency was nearly eliminated shortly after its establishment, in the mid-90s, when it endorsed non-surgical interventions for back pain, a position that angered the North American Spine Society, a trade group representing spine surgeons. A subsequent campaign led to significant funding losses for AHRQ, and since then, the agency as a whole has been a perennial target for Republicans.

In 2016, Campbell notes, AHRQ got the attention of an especially powerful opponent: Tom Price, then still a member of the House. AHRQ maintained on its site a 2010 study that said unkind things about a drug made by one of his big donors, and as Pro Publica reported, an aide from Price's office repeatedly pestered the agency to pull that critical study offline. The study stayed up, albeit with a notation that it was "greater than 5 years old. Findings may be used for research purposes but should not be considered current," which the agency said was added merely as part of standard practice for all research over five years old. Price went on to be Trump's first HHS secretary; he's gone, of course, but the study (and its note) are still up.

Funding for the NGC database had been shunted into the Affordable Care Act, but Republicans engineered that line of funding to sunset next year, and with Republicans running everything, no additional funding was made available. So HHS made the decision to pull the plug, without so much as an archived version kept in place. AHRQ official Mary Nix, who was working to try to find outside partners to fund or take over the database, estimated even a static archive would cost "a "few hundred thousand" bucks annually to maintain.

Out of all the crappiness, at least one bright-ish spot: The healthcare nonprofit ECRI (used to stand for "Emergency Care Research Institute" but its mission expanded to all patient care, so now, like KFC, it's just initials without words, please help) announced yesterday it will reopen the guidelines site this fall. But of course, there's a catch:

"We will be making changes, improvements to make the site easier to use and more implementable," said ECRI spokeswoman Laurie Menyo. "Because we are a nonprofit and do not have financial backing at this time, we will have to charge a fee for this service."

Also somewhat reassuring: ECRI refuses any funding from industry, so the database can be preserved and presumably built upon until some great day when a future Congress gives two shits about science again. In its story on the semi-resurrection of the database, Politico has some choice words from people who know things about healthcare (you know, enemies of the people):

"Removing medical evidence from the public space is harmful to the practice of medicine, and thus harmful to patients," said Risha Gidwani, a Stanford health economics researcher. "This is a new level of stupid," tweeted former Obama administration health official Bob Kocher.

For now, the Agency for Healthcare Research and Quality itself will continue limping along on such fumes as the R's allow it, at least until its last remaining dollars are siphoned off to build more baby jails.

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[Daily Beast / Mother Jones / Politico]

Doktor Zoom

Doktor Zoom's real name is Marty Kelley, and he lives in the wilds of Boise, Idaho. He is not a medical doctor, but does have a real PhD in Rhetoric. You should definitely donate some money to this little mommyblog where he has finally found acceptance and cat pictures. He is on maternity leave until 2033. Here is his Twitter, also. His quest to avoid prolixity is not going so great.

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