By Pat Anson, PNN Editor

The long wait for the CDC to finally unveil changes to its controversial opioid guideline is going to be longer than we thought.

Even though an update to the 2016 guideline is the main topic on the agenda for a July 16th meeting of the CDC Board of Scientific Counselors (BSC), the agency has no plans to make the revisions public at that time. PNN reported earlier this week that the CDC was “expected to release a long-awaited draft of a revised guideline” during that meeting, but that is incorrect.

“The draft updated Guideline will not be shared. The BSC Opioid Working Group report is what will be shared and discussed,” Courtney Lenard, CDC spokesperson, wrote in an email. 

The “Opioid Workgroup” is an independent panel of physicians, academics and patients that was created last year to advise the CDC about revisions to the guideline. The panel had no direct role in rewriting the guideline and has only seen a draft of it.

According to the July 16 meeting agenda, at least three hours have been set aside for the BSC to receive an update on the guideline from CDC staff, followed by a discussion of the workgroup’s report. How such a lengthy discussion could occur without the revised guideline being made public is unclear.

When asked to explain, Lenard said only the “process and progress” of the revised guideline would be discussed. She also indicated the public may not see a draft version in the Federal Register until late this year, with the final, revised guideline not expected until late 2022.

“CDC anticipates that the draft updated Guideline will be posted for public comment by the end of 2021. This will provide another critical opportunity for diverse input from the public,” Lenard explained. “In 2022, after the public comment period has closed, CDC will revise the draft updated Guideline. CDC takes public comment seriously and will carefully consider this input while finalizing the update to the Guideline. Release of a final, updated Guideline is anticipated to occur in late 2022.”

People in pain and their advocates have been calling for major changes to the guideline ever since its 2016 release. Although voluntary and only intended for primary care physicians treating chronic pain, the guideline’s recommended doses and limits on opioid prescribing were quickly adopted as policy by other federal agencies, dozens of states, insurers, pharmacies and doctors of all specialties.  

As a result, many pain patients who took opioids safely for years were cutoff or tapered to lower doses, leading to uncontrolled pain, withdrawal and, in some cases, suicide. While the CDC has acknowledged the problems the guideline has created, the agency had dragged its feet on offering solutions or making revisions.

“The refusal of CDC to make detailed interim reports on its progress in ‘re-writing’ their 2016 opioid guidelines was also evident in their February 2021 meeting of the Board of Scientific Counselors,” said patient advocate Richard “Red” Lawhern, PhD. “If repeated in the July 16th meeting, I would personally regard such a policy to be a major failure of process and public transparency, creating potential grounds for a federal lawsuit on grounds of agency fraud and malfeasance.”  

It cannot be overstated the amount of suspicion and distrust there is for the CDC in the pain community. A recent PNN survey of over 3,700 patients, doctors and caretakers found that over 90% believe the guideline did not improve the quality of pain care and failed to reduce opioid addiction and overdoses. Three out of four believe the entire guideline should be thrown out.

When asked if the CDC could be trusted to handle the revision of the guideline in an unbiased, scientific and impartial manner, over 89% said no.

If you’d like to watch the July 16th CDC meeting online, you can register for it here.