By Pat Anson, PNN Editor

The U.S. Centers for Disease Control and Prevention has censored over a dozen public comments about its revised opioid guideline to remove negative references to Dr. Roger Chou, one of the guideline’s co-authors.  

Chou is a controversial figure in the pain community. A prolific researcher and an outspoken critic of opioid prescribing, Chou heads the Pacific Northwest Evidence-based Practice Center (EPC) at Oregon Health & Science University.

Over the last five years, the university has received nearly $2 billion in contracts from the CDC and other federal agencies, much of it going to the EPC to support Chou’s research. That research, which generally discourages the use of opioids, is cited over 100 times in the revised CDC guideline.

The CDC published the revised draft in the Federal Register last month and invited the public to submit comments, with the agency cautioning posters that it “may choose to redact, or withhold, submissions containing private or proprietary information.”

Of the 2,600 submissions received so far, over 280 have been edited in some way, mostly to remove personal information about the poster or their medical provider

But at least 15 comments critical of Chou’s research and his role in writing the opioid guideline have also been edited to remove his name, even though much of the information they contain is already public and not proprietary.

Chou’s name is redacted four times from this post by Emma W:

“I think it’s reasonable for them to redact private information, physicians’ names, clinic names, etc. I’m all for protecting privacy. But it makes no sense to me that they would redact the names of guideline authors and/or the authors of research papers they directly cite as evidence,” said Emma, who asked that we not use her last name. “I did not personally make any offensive, rude, or vulgar remarks about him in my comment, so I’m still at a loss as to why I and some others were singled out.”

In addition to being a co-author of the revised guideline, Chou was one of the authors of the original 2016 guideline, which led to significant cutbacks in opioid prescribing nationwide. He also continues to serve on the CDC’s Board of Scientific Counselors, despite admitting to a financial conflict-of-interest (COI) at a board meeting last year.

“Since CDC funds Chou’s research, which supports their guidelines, my guess is that they’re going above and beyond to protect him from criticism,” Emma told PNN. “I suppose I should’ve expected this, considering absolutely nothing has been done about his continuing involvement in these guidelines despite his COIs.”

“It is outrageous but I’m not surprised,” said Julie Killingworth, whose comment was edited 6 times to remove the names of Chou and others.

“I thought my comment would be removed because I stopped appeasing the CDC with politeness long ago. I’m not surprised the CDC is silencing people they have cruelly targeted to be tortured,” Killingworth told PNN. “The CDC does not deserve the national respect they feel entitled to receive.” 

To be clear, not every post that references Chou has been edited. PNN identified 5 posts where his name has not been redacted. Those comments are also critical of Chou’s extensive involvement researching, developing and writing the guideline.

“I am concerned about the legality of redacting public comments. This in my experience is quite irregular,” says Terri Lewis, PhD, who co-authored a 2021 paper that looked into Chou’s conflicts of interest. “It doesn't change what are legitimate concerns about what are very real conflicts of interest and the failure to disclose same, especially in light of other historical facts that are emerging.”

In addition to the Chou redactions, the CDC has censored several comments that mention Dr. Andrew Kolodny by name and other members of Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group that Kolodny founded.

Chou has collaborated on several occasions with PROP, including a 2019 op/ed he co-authored with PROP President Dr. Jane Ballantyne and PROP board member Dr. Anna Lembke that encourages doctors to consider tapering “every patient receiving long term opioid therapy.”

(3/31/22 Update: Nearly three weeks after we asked CDC why the names of Chou and others are being redacted, we received this reply from a spokesperson:

“Our approach with comments on this FRN (Federal Register Notice) was to redact all individuals’ names to protect privacy. With so many comments, there have been a few that were not redacted in line with this approach, but the intent was to redact names of any and all individuals.”

The spokesperson said the CDC may also “redact or withhold certain submissions” that contain private or proprietary information, inappropriate language, or duplicated public comments that could indicate a mass-mail campaign.)

The CDC will continue to accept public comments about the revised guideline until April 11. Click here to make one.

Ironically, the revised guideline has generally been received favorably by the pain community because it gives doctors more flexibility in prescribing opioids. Some patients and advocates are leery, however, that the revisions won’t restore access to opioid medication or fix all the other problems the original guideline created, such as patients being forcibly tapered or reduced to ineffective doses.