CDC: Opioid Guidelines 'Not a Rule, Regulation or Law'

By Pat Anson, Editor

It’s no secret in the pain community that many patients are being taken off opioid pain medication or weaned to lower doses because of an overzealous reaction by doctors to the CDC’s opioid prescribing guidelines.

Those guidelines – which discourage opioid prescribing for chronic pain -- are meant to be voluntary and are intended only for primary care physicians. Yet they are having a chilling effect on many doctors and their patients.

One such patient, a retired Nevada pharmacist who took high doses of opioids for years for chronic back and hip pain, refused to be silent when his pain management doctor abruptly lowered his dosage to 90 mg (morphine equivalent) a day – the highest dose recommended by the CDC.  

Richard Martin wrote 27 letters to the CDC and didn’t mince words, saying doctors in the Las Vegas area “are scared shitless that the DEA will get them” and that their malpractice insurance rates would skyrocket if they didn’t follow the guidelines to the letter.

“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.

“The medical community has failed me. I was stable on my opioid regimen for over 6 years. No tolerance, no cheating, no hyperglasia and a pretty good quality of life. Last year my primary MD up and told me to go to a pain specialist. He would no longer provide me with opioid prescriptions. The first thing the pain doctor did was decrease my opioids. Of course I am in much more pain now. Due to my decreased level of activity my blood sugar levels have spiked. I used to be able to walk up to 3 miles every other day. Now I can’t go walking. I may have to start taking insulin.”  

To see all of Martin’s letter, click here.

Martin received two responses from the CDC. One appears to be nothing more than a form letter, in which a CDC official blandly wrote, “We are sorry to hear about your health problems.”

The other letter was from Debra Houry, MD, Director of the CDC’s National Center for Injury Prevention, which oversaw the guidelines’ development. In her letter, Houry appears to acknowledge that the guidelines are being too widely implemented by doctors.

“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain,” wrote Houry.

“Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy. 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.”

To see Houry’s letter in its entirety, click here.

Martin wrote back to Houry and challenged her to address the issue of patients being abruptly weaned from opioids more publicly.

DEBRA HOURY, MD

“My pain management doctor and his group are quoting your guidelines and more or less cowardly blaming you for the problem. Personally, I think they may be using this as an excuse to get rid of Medicare patients and perform more interventional injections or procedures,” he wrote in his follow-up letter, which you can see by clicking here.

“The CDC, in my opinion, should change the dosing guideline… The CDC should EMPHASIZE as you stated ‘The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication.’”  

Martin has yet to receive a response from Houry. When Pain News Network contacted the CDC about the letters, we were encouraged to post them. But the agency declined an offer to explain its position further.

Martin’s letter writing campaign hasn’t ended. He’s written to the American Association of Retired Persons (AARP) about the “huge tragedy unfolding across America” and has been contacted by Pharmacy Today magazine about having one of his letters published.

Patient Survey about CDC Guidelines

Another pain patient who is fighting back is Lana Kirby, a 60-year old retired paralegal who suffers from chronic back pain and several other chronic illnesses. Kirby and her husband recently moved to Florida, but found she can't find a doctor in that state willing to prescribe the pain medication she needs. So every three months, Kirby drives back to her home state of Indiana to see a doctor and get her prescriptions filled.

“In all my years as a paralegal, I've never seen anything like this,” she told PNN.  “Quite frankly, if an attorney were to take this to Federal Court, it would be a slam dunk due to the damages occurring on an ongoing basis and the ‘avoidable decline.’ We all know it costs a lot more to take care of a bedbound person than someone who can take care of themselves.  And if that means using opioids, that is the way it should be.  But as far as I know, no one has found an attorney with the resources to take on a case like this.”

Kirby is conducting an online survey of pain patients, asking if their opioid doses have been lowered since the CDC guidelines came out or if they have been discharged or abandoned by their doctors.

“The reason I did the survey was because I was talking to hundreds of pain patients everyday online and they all were saying the same thing,” she said. “Having a legal background, I felt that the damages needed to be documented and quantified in order to prove what was going on and the volume of people affected.”

To take Kirby’s survey, click here.