By Pat Anson, Editor
A consulting company hired by the Centers for Disease Control and Prevention warned the agency last year that many doctors had stopped prescribing opioid pain medication and that chronic pain patients felt “slighted and shamed” by the CDC’s opioid guidelines.
“Some doctors are following these guidelines as strict law rather than recommendation, and these physicians have completely stopped prescribing opioids,” PRR warned in a report to CDC in August 2016, five months after the CDC released its guidelines.
“Pain patients who have relied on these drugs for years are now left with little to no pain management options. Chronic pain is already stigmatized. Now chronic pain patients face the stigma of addiction, even when they are using opioids responsibly for pain management.”
PRR is a well-connected marketing and public relations firm based in Seattle that has worked for a number of companies and public agencies, including the Environmental Protection Agency, Starbucks, Nike, and the University of Washington.
PRR was hired by the CDC to improve the agency’s public image and to develop a communication strategy to help educate the public about the CDC’s controversial opioid guidelines.
Those guidelines, which discourage doctors from prescribing opioids for chronic pain, are voluntary and only intended for primary care physicians. But they’ve been widely adopted as mandatory throughout the U.S. healthcare system, causing additional pain and anxiety for millions of pain sufferers.
“Chronic pain patients feel or perceive that the CDC has failed them because doctors are making extreme generalizations in determining appropriate care for their pain patients,” PRR found.
The PRR report to CDC was obtained by Pain News Network under the Freedom of Information Act. Excerpts from the report can be seen by clicking here.
PRR recommended that CDC take a number of steps to understand why the guidelines were being so poorly received by patients.
“CDC should consider conducting more research to understand the fears and concerns of patients with chronic pain conditions. Understanding this group’s perceptions and fears of the PDO (prescription drug overdose) guidelines will help the CDC more successfully communicate with patient advocacy groups and will help insure their targeted messages are being disseminated to patients,” PRR recommended.
“Overall, this will help CDC message and communicate to those living with chronic pain and help providers and patients understand best care options available to enhance and improve quality of life.”
No CDC Response to Recommendations
There is no evidence that CDC has followed through on the recommendations. When asked if the agency had conducted any research or surveys of pain patients in response to the PRR report, the CDC gave us only a brief and vaguely worded statement. Note the use of the word “will.”
“CDC will evaluate the uptake, utility, and public health impact of the guideline and will monitor and assess physician and patient response to the guideline; based on this information, we will update the guideline in the future, as needed.
CDC continues to develop resources for patients and providers about the risks and benefits of opioid therapy for chronic pain to improve the safety and effectiveness of pain treatment and reduce the risks associated with long-term opioid therapy, including opioid use disorder, overdose, and death.”
CDC pledged in March 2016 to make changes to the guideline “if new evidence becomes available” and said it was “committed” to evaluating the guideline’s impact – “both intended and unintended.”
But in the 17 months since that pledge was made, there has apparently been no effort by CDC to assess the guideline’s impact on pain care, doctors, patients, suicides, addiction or overdoses -- at least none that the agency will talk about.
“We’ve provided you our statement,” a CDC spokesperson said in an email.
PRR also declined to answer any questions about its report or if any follow-up research is being done.
“We are proud of our work, and we respect client communications protocols. Therefore, we refer you to the CDC to ask your questions directly,” said Jennifer Lynch, PRR’s business development manager.
For the record, this reporter was one of five individuals interviewed by PRR last summer, and asked a series of questions about the CDC guideline. Others who were surveyed include Barby Ingle of the International Pain Foundation, Paul Gileno of the U.S. Pain Foundation, chiropractor Sean Konrad, and Dr. Lynn Webster, a pain management expert and past president of the American Academy of Pain Medicine.
“I was contacted by the PRR firm as well. I was told that the CDC wanted to know what they did wrong with the opioid prescribing guidelines,” recalled Webster. “I think it is clear that the CDC should have had more input from the pain community in developing the opioid guidelines.
“Any intervention by the CDC or any government agency that affects millions of people should be accompanied with a plan to assess the effect of the intervention. In other words, the CDC should have planned to measure the effect on intended goals and any unintended consequences from the intervention.”
"CDC recommends close follow-up for patients who are using opioids to treat chronic pain, but they don’t seem to be eager to apply that same advice to their own intervention," said Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management. "CDC seems to be eager to evaluate the impact of its guideline in terms of metrics such as number of opioid prescriptions written, but they seem to have little concern about assessing the extent to which decreased prescribing is adversely affecting people with pain.
"In all the discussion about the evidence base supporting the guideline, what seems to have gotten lost is a need to develop the evidence base to show how effective or ineffective that intervention has been. Unfortunately, this lack of evaluation is consistent with CDC’s lack of interest in evaluating the prevalence and demographics of chronic pain itself."
Guidelines Made Pain Care Worse
There have been many unintended consequences caused by the guidelines. In a survey of over 3,000 patients and nearly 300 healthcare providers by PNN, eight out of ten patients said their pain and quality of life had grown worse. Many patients are having suicidal thoughts, and some are hoarding opioids or turning to illegal drugs for pain relief.
Over half of the healthcare providers said they had stopped prescribing opioids or were prescribing lower doses. Many providers also believe the guidelines are ineffective or have made pain care worse:
- 40% believe CDC guidelines have been harmful to patients, while only 22% consider them helpful
- 67% believe guidelines have made it harder for pain patients to find a doctor
- 63% believe the guidelines have not improved the quality of pain care
- 66% believe guidelines have not been effective in reducing opioid abuse and overdoses
- 35% of providers are worried about being prosecuted or sanctioned for prescribing opioids
“I am not sure the CDC is aware of the increased legal trouble many physicians are experiencing as a result of the guidelines. Most of these physicians are just trying their best to help people in pain but are being accused of criminal conduct,” said Webster.
Webster was apparently the only pain management physician interviewed by PRR. The company also reviewed 11 online articles and blogs (about half written by doctors), which gave the guidelines mixed reviews. PRR's bare bones analysis could hardly be called comprehensive, yet two federal health officials portrayed it as a ringing endorsement of the guidelines by physicians.
“Practitioners are excited to see action taken to address the PDO epidemic,” wrote Tonia Gray and John O’Donnell of the Substance Abuse and Mental Health Services Administration in an appendix to the PRR report. “From our scan of responses, PRR found that many agree this is a step in the right direction to help providers make informed decisions and stem the PDO issue.”
That assessment certainly doesn't reflect the thoughts of Dr. Webster.
“I would urge the CDC to reassess their process and attempt to understand the unfortunate consequences their well-intended but misinformed decisions have had,” said Webster.
“One presumably unintended consequence is the recommendations/guidelines have been adopted as rules and laws, which has resulted in a significant change in care for millions of patients. The guidelines were never intended to do that – they lack the backing of scientific evidence to be treated as a law.”
CDC has made few efforts to remind doctors, insurers, politicians and state regulators that the guideline is voluntary and only intended for primary care physicians. One of the few was a letter from a top CDC official to Richard Martin, a retired Nevada pharmacist disabled by chronic back pain.
“All of you at the CDC and like-minded groups, individuals, etc. are causing hundreds of thousands, if not millions of people, to suffer in pain needlessly,” wrote Martin, who sent 27 letters and emails to the agency before getting a response from Debra Houry, MD, Director of the CDC’s National Center for Injury Prevention.
“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients,” wrote Houry, who oversaw the development of the guideline. “The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making.”
Houry’s letter to Martin was dated June 1, 2016, a full two months before CDC received the PRR report, suggesting that CDC was already aware that problems were developing with the guideline and that many physicians considered it mandatory.
To be clear, PRR’s review of patient and doctor attitudes about the guideline was only a small part of the work it performed for CDC. PRR also provided media training to CDC officials, analyzed news and social media coverage of CDC projects, developed logos and brands, shot promotional videos and pictures, and performed other work traditionally associated with public relations projects.
PRR also developed a series of fact sheets and graphics to help CDC promote the opioid guideline – many of which are still in use today.
The graphics advise doctors that “opioids are not first-line or routine therapy for chronic pain” and that physicians should “start low and go slow” when opioids are prescribed. They also encourage doctors to tell patients that “there is not enough evidence that opioids control chronic pain effectively long term.”
One PRR graphic claims that "as many as 1 in 4 people" who take opioids long-term become addicted. The graphic is based on a single study that even the author admits may have been biased and used unreliable data. A longtime critic of the CDC calls the graphic "propaganda."
According to the National Institutes of Health, only about 5% of patients taking opioids as directed for a year end up with an addiction problem. Other estimates put the addiction rate higher and some lower.
It’s been difficult to assess how much PRR was paid for its work. Invoices sent to CDC indicate the original budget for the project was $240,596, but there were numerous delays and changes in the work performed. The invoices have been heavily redacted by the agency at the request of PRR, which considers the information proprietary.