By Pat Anson, PNN Editor
Carol Levy’s recent column (see “Guideline Paranoia”) drew quite a response from PNN readers, many of them offended by Carol’s contention that pain sufferers complain too often about the CDC’s 2016 opioid prescribing guideline.
“Maybe if we did not take any and all new guidelines as a frontal attack on us, maybe we would not be seen and referenced so often as a major component and cause of the opioid epidemic,” Carol wrote.
Those were fighting words to many pain sufferers who’ve been cutoff from opioid medication or had their dose reduced since the guideline came out. Dozens of patients commented on Carol’s column.
“Sounds a bit like blaming the victim for getting upset,” said Jen Saeger. “We ARE being targeted and having our medication taken away because these CDC guidelines have been taken as law. This isn’t overreacting, this is happening all over the country.”
“This woman needs to be educated about what is actually happening. We aren't overacting,” said Teresa. “Does she not know pain patients are being tapered or have completely lost their pain meds? Has she not heard of the suicides that are occurring in the chronic pain community?”
“Once these guidelines were released my pain doctor cut my medications by nearly 50% as well as many of his other chronic pain patients. He also showed me a letter from the CDC exclaiming that he was writing too many prescriptions for narcotic pain killers,” said Joe Allio. “So when they say this was a suggested guideline and not a mandate, IT'S A BIG FAT LIE!!!!! What I saw in this letter was nothing short of a threat!”
“The policymakers are the ones that need to be reminded that these are just guidelines,” wrote Vickie Tway. “You might especially want to let the DEA know this as they are running roughshod over physicians and causing those who DO want to help intractable pain patients to give up their profession for fear of being raided and facing criminal charges for doing their jobs.”
“The problem is that (doctors), pharmacies and insurance companies are using those said guidelines against chronic pain patients. Whether that's who they were intended for or not. CPP are having their meds cut back or cut off because of this hysteria and the new guidelines,” said Tracey Morales. “Until the CDC makes a statement to set this right people are going to continue suffering.”
CDC ‘Committed to Evaluating the Guideline’
PNN readers are better informed and more knowledgeable about the CDC guideline than most Americans. And they’re right when they say that the guideline was only supposed to promote a dialogue between primary care physicians and patients about the risks of opioid therapy. The recommendations were never meant to be mandatory rules for everyone to follow, yet they’ve been widely adopted by other federal agencies, states, insurers, pharmacies and throughout the U.S. healthcare system.
Within months of the guideline’s release, CDC was warned by its own public relations consultants that “some doctors are following these guidelines as strict law” and that “pain patients who have relied on these drugs for years are now left with little to no pain management.”
In a joint letter to the CDC last year, over 200 healthcare providers warned the agency that many patients were being abandoned or forcibly tapered off opioids, and some were turning to suicide or illegal drugs to escape from their pain.
“Within a year of Guideline publication, there was evidence of widespread misapplication of some of the Guideline recommendations,” the letter warns. “These actions have led many health care providers to perceive a significant category of vulnerable patients as institutional and professional liabilities to be contained or eliminated, rather than as people needing care.”
The CDC pledged three years ago to “revisit this guideline as new evidence becomes available.”
“CDC is committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted.”
Will the CDC keep its pledge? The agency did not immediately respond to a request for comment on what it was doing to assess the impact of guideline or whether it would be revised.
(Update: On February 28th — 9 days after we asked — the CDC sent PNN a brief statement indicating it has “several studies underway with external researchers” evaluating the impact of the guideline on opioid prescribing and patient outcomes.
“CDC is commissioning a chronic pain systematic review by the Agency for Healthcare Research & Quality (AHRQ) to determine what new scientific evidence has been released since the CDC Guideline was released in March 2016. The chronic pain systematic review is underway now,” said CDC spokesperson Courtney Lenard.
“The review will evaluate the effectiveness and comparative effectiveness of non-opioid pharmacologic therapy and pharmacologic (opioid and non-opioid) therapy for chronic pain, considering the effects on pain, function, quality of life, and adverse events.”
The statement gave no indication when the review and other studies would be completed.)
How has the guideline affected you and should it be revised? If you’re a patient or healthcare provider, you can help shape the debate by taking our survey. Either click here or on the banner above.
We’ll release the survey results on March 15th, the third anniversary of the guideline’s release.