“Some policies and practices citing the guideline went beyond its recommendations,” said Dr. Deborah Dowell, Chief Medical Officer for NCIPC and co-author of the guideline. “The guideline does not support abrupt tapering or sudden discontinuation of opioids, but has been inappropriately cited to justify hard limits or cutting off opioids.

“In addition, we’ve heard reports of misapplications beyond the guideline’s clearly stated scope. For example, applying the recommendations to patients in cancer treatment or experiencing surgical pain.”

Last year the American Medical Association took a stand against the “misapplication” and “inappropriate use” of the guideline. The Food and Drug Administration has also warned that many patients are being tapered off opioids inappropriately, putting them at risk of withdrawal, uncontrolled pain and suicide.

Although the matter appears urgent, Dowell said the CDC was “just getting started” on updating the guideline. She said updated recommendations would likely not be finalized until late 2021, five and a half years after the initial guideline was released.

‘Way Too Long to Wait’

During a public comment period, critics called the guideline a failed public health experiment that has done more harm than good.

“No one should have to die in pain. No one should have to live in pain,” said Amber Bullington, an intractable pain patient who was forcibly tapered off opioids. “We need to rescind the CDC guidelines and undo the harm you’ve done. You say you want to save lives. You’re not saving lives. Overdoses continue to escalate. Pain patients are dying and suffering.”

“I have talked to patients all over the U.S. who are being denied treatment because of the reign of terror that has been established against doctors who try to treat them with opioid prescriptions. This has to stop. This is madness,” said patient advocate Richard “Red” Lawhern.

Others expressed concern about the guideline not being updated until 2021.

“It’s important that something be done in the interim to negate the effect of the misuse of the guideline across the board by so many government agencies,” said Richard, a pain patient and advocate. “Two years is way too long to wait for this to get fixed.”

“Chronic pain patients may not be able to last that long. Many won’t,” said Peter Pischke, a patient advocate. “I beg you guys, keep this in mind. You will have to make it clear and un-vague so that every politician, bureaucrat, administrator, every law enforcement official knows that what you guys tried to do in 2016 failed miserably when it came to patients with cancer and patients with chronic pain.”

The BSC voted unanimously to form a new “Opioid Workgroup” of 12 to 20 people to direct efforts to update the guideline. While a wide range of medical specialties would be represented on the panel, there was no mention of including patients or patient advocacy groups in anything more than an advisory or ad hoc role.

Nominations to serve on the Opioid Workgroup will be accepted until February 4, 2020.

As PNN has reported, the CDC has funded three new studies of opioid and non-opioid treatments for chronic pain. Draft reports are expected to be finalized in early 2020. Two additional studies of treatments for migraine and acute pain were recently awarded to the Mayo Clinic and Oregon Health & Science University, respectively, at a cost of $1.36 million. Results from those studies are not expected until August 2020.