By Pat Anson, Editor

In a recent survey of nearly 2,000 pain patients, over two-thirds said their opioid medication has either been reduced or stopped by their doctor since the CDC’s opioid prescribing guidelines were released.

That’s either a remarkable degree of compliance with guidelines that are supposed to be voluntary or a sign they are being rigidly adopted and implemented by physicians, regardless of the impact on patients. Judging by the comments we’ve received from readers, it’s the latter.

“With the new guidelines for opioids, I’ve been caught up in having my meds cut in half. I can’t physically function through the day and I suffer in pain, which doesn’t seem to mean anything to my physician,” said Brett.

“The specialist who manages my pain medications says that it is a federal guideline that they are not allowed to modify in any way, even according to patient need,” said Diane.

“The nurse told me that no other doctor would prescribe me this (opioid) medication, because the new law states only cancer patients and end of life patients could have long term opioids,” wrote Deanna.

These comments reflect some of the myths that have developed since the CDC guidelines were released in March. Let’s look at five of them.

Myth #1: The CDC prescribing guidelines are mandatory

False. The guidelines are voluntary and intended only for primary care physicians, yet they are being widely implemented by many prescribers, including pain management specialists and even some oncologists. Here is what the guidelines actually say:

"This guideline provides recommendations for the prescribing of opioid pain medication by primary care providers for chronic pain in outpatient settings outside of active cancer treatment, palliative care, and end-of-life care. Although the guideline does not focus broadly on pain management, appropriate use of long-term opioid therapy must be considered within the context of all pain management strategies… The guideline offers recommendations rather than prescriptive standards; providers should consider the circumstances and unique needs of each patient."

The voluntary nature of the guidelines was reinforced in a recent letter to a pain patient by Debra Houry, MD, Director of the CDC’s National Center for Injury Prevention, which oversaw the guidelines’ development.

“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 in her letter to Rich Martin, a retired pharmacist disabled by chronic back and hip pain. 

“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 and perhaps even print a copy for your doctor, click here.

Myth #2: The guidelines establish a limit on the highest dose of opioids

False. The guidelines recommend that prescribers should “use caution” when prescribing opioids at any dose and “additional precautions” when dosages exceed 50 mg (morphine equivalent) a day. Prescribers are warned to “generally avoid” increasing dosages over 90 mg a day, but are never told they cannot exceed it.

The guidelines are also written in a way that emphasize the dosing recommendations are mainly intended for new patients, not established patients who’ve been on high opioid doses for years without any problems. The guidelines recommend that physicians “collaborate” with those patients on a new treatment plan – a practice known as informed consent:

"Established patients already taking high dosages of opioids, as well as patients transferring from other providers, might consider the possibility of opioid dosage reduction to be anxiety-provoking, and tapering opioids can be especially challenging after years on high dosages because of physical and psychological dependence… For patients who agree to taper opioids to lower dosages, providers should collaborate with the patient on a tapering plan. Experts noted that patients tapering opioids after taking them for years might require very slow opioid tapers as well as pauses in the taper to allow gradual accommodation to lower opioid dosages."

Still, many patients say they are being abruptly tapered to lower doses without having any input into the decision.

“I have severe chronic pain issues along with fibromyalgia and was barely getting by on 150 mg opioids per 24 hours, and now am being tapered down to the new 90 mg in 24 hours. I have gone from being relatively functional to nearly home bound,” said Diane.

“My pain management doctor announced to me, that he and his two other partners in the pain management clinic, are reducing all non-cancer chronic pain patients to the CDC's guideline of 90 mg morphine equivalent.  He told me they had to follow these guidelines,” says Rich Martin. 

Myth #3: The guidelines require doctors to drop patients if they fail a drug test

False. The guidelines specifically recommend against this practice:

"Providers should not terminate patients from care based on a urine drug test result because this could constitute patient abandonment and could have adverse consequences for patient safety, potentially including the patient obtaining opioids from alternative sources and the provider missing opportunities to facilitate treatment for substance use disorder."

Yet patients tell us they’re being dropped after just one failed test.

“I have been in pain management for the past 8 years. Suddenly, I went to my appointment one day the doctor rudely told me that I'm not welcome back and the reason I even have an appointment is because they want to tell me I failed my UA (urine test) for cocaine," wrote on patient.

"First of all, I don't do cocaine. I smoked weed. How come I would test positive for cocaine but not for weed?”

As Pain News Network has reported, the point-of-care (POC) urine drug tests widely used by doctors are wrong about half the time -- frequently giving false positive or false negative results for drugs like oxycodone, methadone, methamphetamines and antidepressants.

According to one study, POC tests give false positive readings for cocaine about 12 percent of the time, and they fail to find signs of marijuana – a false negative -- about 21 percent of the time.

The guidelines suggest that prescribers not even test for THC – the active ingredient in marijuana:

"Providers should not test for substances for which results would not affect patient management or for which implications for patient management are unclear. For example, experts noted that there might be uncertainty about the clinical implications of a positive urine drug test for tetrahydrocannabinol (THC)."

The CDC admits urine drug tests “can be subject to misinterpretation” but recommends their use anyway, before opioid therapy begins and at least once annually thereafter.  If “unexpected results” are found, the guidelines say they should be verified by more expensive laboratory tests.

Myth #4: The guidelines will help reduce opioid abuse and overdoses

The early results are not promising. The prescribing of opioid pain medication was in decline years before the guidelines were issued, yet overdose death rates continued climbing. In recent months, opioid overdoses in several northeastern states have spiked, with most of the deaths blamed on illicit fentanyl smuggled into the country from China, Mexico and Canada.

Most disturbingly, drug traffickers are learning how to manufacture counterfeit pain medication with fentanyl. The DEA says the U.S. is being “inundated” with hundreds of thousands of these fake pills. It’s not just street addicts being victimized by the fentanyl scam. Some are pain patients who turned to the black market for relief because they could no longer get opioid prescriptions legally.

“Fentanyls will continue to appear in counterfeit opioid medications and will likely appear in a variety of non-opiate drugs as traffickers seek to expand the market in search of higher profits. Overdoses and deaths from counterfeit drugs containing fentanyls will increase as users continue to inaccurately dose themselves with imitation medications,” the DEA said in a report this summer.

Pain patients predicted that illegal drug use would soar in a survey conducted by Pain News Network and the International Pain Foundation last October. Asked what would happen if the CDC guidelines were adopted, nearly 60% said pain patients would get their opioids through other sources or off the street. Another 72% said use of heroin and other illegal drugs would increase. And 78% predicted more patient suicides.

Could the CDC have seen this coming? In its urgency to get the guidelines adopted, the agency never took a hard look at the unintended consequences the guidelines could have:

"Concerns have been raised that prescribing changes such as dose reduction might be associated with unintended negative consequences, such as patients seeking heroin or other illicitly obtained opioids or interference with appropriate pain treatment. With the exception of a study noting an association between an abuse-deterrent formulation of OxyContin and heroin use… CDC did not identify studies evaluating these potential outcomes."

Myth #5: There are better alternatives than opioids

There are many different types of non-opioid medications, ranging from over-the-counter pain relievers like ibuprofen and acetaminophen to prescription drugs like Lyrica (pregabalin) and Neurontin (gabapentin). There are also several non-pharmacological treatments like acupuncture, massage, physical therapy, and cognitive behavioral therapy (CBT).

The CDC guidelines make it sound like these alternative treatments always work and are readily available to every patient:

"Many nonpharmacologic therapies, including physical therapy, weight loss for knee osteoarthritis, complementary and alternative therapies, psychological therapies such as CBT, and certain interventional procedures can ameliorate chronic pain. In particular, there is high-quality evidence that exercise therapy for hip or knee osteoarthritis reduces pain and improves function immediately after treatment.

Several nonopioid pharmacologic therapies (including acetaminophen, NSAIDs, and selected antidepressants and anticonvulsants) are effective for chronic pain. In particular, acetaminophen and NSAIDs can be useful for arthritis and low back pain. Selected anticonvulsants such as pregabalin and gabapentin can improve pain in diabetic neuropathy, post-herpetic neuralgia, and fibromyalgia."

But when we asked over 2,200 pain patients what they thought about these alternative treatments, most said they didn’t work. Three out of four patients said over-the-counter pain relievers “did not help at all” and 64% said the same about nonpharmacological treatments such as exercise and weight loss.

Non-opioid medications like Lyrica, Neurontin and Cymbalta fared a little better, with only about half of patients saying they did not help. But many also complained about side effects from the drugs, such as weight gain, anxiety and withdrawal symptoms.

Some patients are being coerced into treatments they don’t want, such as epidural steroid injections. Over a third of the patients recently surveyed by Lana Kirby, founder of Veterans and Americans United for Equality in Medical Care, said they have been told by a healthcare provider that they must have an operation or invasive procedure or they’ll no longer get opioids or be discharged from the practice.  

“Respondents are being threatened with pain care protocols that are not optimal, such as epidural injections and installation of durable medical equipment. If they refuse, their access to oral medications, even where they have been used impactfully, is systematically reduced or suspended,” said Terri Lewis, PhD, a patient advocate and researcher who analyzed the survey findings.

Over half the patients (57%) in that survey said they had been discharged by a doctor because they required opioid treatment. Of those who were discharged, only half were able to find a new physician.

Perhaps the most telling response in that survey is that half of the patients admit considering suicide as a way to end their pain.

“Patients increasingly report that they are harmed directly and indirectly as changes to their healthcare routines have resulted in limited access, reduced quality of healthcare interactions, and increased out of pocket cost,” said Lewis. “To a person, respondents report that they feel humiliated, degraded, shamed, and stigmatized by the loss of choice over their physician patient alliance and program of care.

"The regulatory changes have increased negative responses to them within their support system (treated like addicts, lack of care for emergencies, pharmacy hassles, and fear of physician). Many now acknowledge that their doctor’s appointment conversation is all about keeping the physician safe from DEA oversight or license restrictions as opposed to optimizing the consumer’s activity and functioning levels.”

In just five months, it is clear the guidelines are having a major impact on the pain community in the United States.  More people are suffering from untreated pain and more are dying from drug overdoses. Yet there is no sign the CDC has any intention to revise and clarify the guidelines or to dispel the myths that surround them.