By Pat Anson, PNN Editor

Pain patients and healthcare providers are giving mixed reviews to proposed changes to the CDC opioid guideline, according to a large new survey that found many are skeptical the revisions will make doctors more willing to prescribe opioids. Others fear the revised draft could lead to even lower and ineffective doses of opioids being prescribed.

Over 2,500 patients, providers and caregivers responded to PNN’s survey on the revised opioid guideline, which is intended to undo some of the damage caused by the agency’s 2016 guideline.

States, insurers, regulators and law enforcement made many of the original guideline’s voluntary recommendations mandatory, resulting in millions of patients being abruptly tapered or taken off opioids. Fearing scrutiny or even prosecution for “overprescribing” opioids, some doctors stopped treating pain altogether.

Like the original guideline, the revised draft still discourages the use of opioids, but clearly states the CDC’s recommendations are intended “to support, not supplant, clinical judgment” and “should not be applied as inflexible standards of care.”

When asked if the revised 211-page guideline is an improvement over the original, only four out of ten people (39%) said it was “improved” or “much improved.”  Most respondents said it was about the same or even worse.

“It is very long and involved but seems like a bait and switch. Starts out speaking to the damage done by 2016 guideline. Then seems to restrict needed medication even more,” a patient told us. 

“Both the original and the revised guidelines are fraught with politics. Nothing's changed. The guidelines are still as harmful as they were when they were published in 2016. No appreciable improvements have been made,” said another. 

“It looks like a step in the right direction, but I'm not sure. I don't think the CDC should be interfering between doctors and their patients,” another patient said.  “My current doctor had his practice raided in a Gestapo-like action that found zero violations. CDC and DEA need to back off and let doctors treat their patients.”

50 MME Perceived As New Hard Limit

The 2016 guideline strongly encouraged doctors not to write prescriptions that exceed doses of 90 morphine milligram equivalents (MME) per day. That 90 MME limit has been dropped from the revised draft, but doctors are still urged to be cautious about going over 50 MME because higher doses have “diminishing returns in benefits relative to risks.”

The language about 50 MME is essentially unchanged from the 2016 guideline, but many patients and providers are worried about it. Over 97% of survey respondents said they are “somewhat concerned” or “very concerned” that 50 MME will be seen as the new hard limit for doses, a level many consider inadequate for pain relief.

“The CDC is assuming that, by reducing the misapplied 90 MME standard to 50 MME, it will reduce misapplication of the standard. Faulty logic. It will, in fact, make it even harder for pain patients to be prescribed more than 50 MME, and the result will be more people in more pain and an increase in pain patient suicides,” one patient told us.

“There should be NO MME! It is too specific to use for everyone. We shouldn't be treated all the same. Each person's pain is different. It was bad enough when it was 90, to now reduce it to 50 MME is just awful,” another patient wrote.  

“50 MME will be the new 90 MME. That’s the crux of it, despite the flowery fenestration and hollow words that 2016 gave the wrong impression. They are merely patronizing us, while lowering the guidelines for how much doctors will actually prescribe,” said another.

“There should be no specific numbers concerning daily dosages. This should be between a patient and their doctor. All of the state laws that control opioid medications need to be overturned and the CDC needs to stop attempting to practice medicine,” a patient said.

‘Leave Pain Management to the Experts’

People are also skeptical that the revisions will ease doctors’ concerns about prescribing opioids. Nearly two-thirds (61%) said the changes won’t make doctors more willing to prescribe the drugs. 

“I'm glad they are changing, but I think the damage has already been done. My doctor took me off pain meds completely and life has been a living hell! Now that he's done that, I don't think he will be open to prescribing them again no matter how many chronic pain issues I have!” said a patient. 

“My doctors took me off pain meds because they were afraid of losing their license and they still are. I sent (them) the link to the new guidelines and they still will not do anything for my pain,” another patient said. “One doctor said, ‘If we give pain meds to our patients who need it, CDC will still be after us for giving pain meds so we can’t take that chance.’” 

“I think the CDC needs to keep his nose out of providers business. I’ve been practicing pain management for 22 years,” a doctor told us. “The CDC guidelines of 2016 have ruined untold lives because they stuck their nose somewhere they shouldn’t have. Leave pain management to the experts and let them decide what each patient needs based on their individual condition.” 

Guideline Expansion

Patients and providers are a bit more receptive about the guideline being expanded to include recommendations for treating short-term acute pain (55%), as well as a handful of specific pain conditions, such as low back pain and migraine (53%).  

Patients with severe constant pain — known an intractable pain — feel left out of the guideline. The word “intractable” is not even mentioned in the draft revision. While some types of severe pain, like cancer pain and sickle cell pain, are specifically excluded from the guideline, others are not.

“I wish that consideration would be given for patients who have intractable pain and have already jumped through the hoops of therapy and other treatments and have found that they didn’t help. It is beyond discouraging to have to repeat trials of treatments that never work for that particular patient,” said one patient.

“There is no difference in cancer and non-cancer pain. Pain is pain. If they’re going to include any conditions (which I don’t think they should) they should recognize rare and incurable illnesses, not just low back pain, sickle cell, and cancer,” another patient wrote. 

End Mandatory Policies

Large majorities also think the CDC needs to do a better job tracking the impact of its guideline on patients (95%) and making sure it is not used to create mandatory policies (96%).

The American Medical Association has even recommended that the CDC undertake a “a national marketing and communications campaign” to make clear to law enforcement and healthcare providers that the revised guideline should not be used like its predecessor to adopt rules that replace individualized patient care. 

Many of our survey respondents agree. Without the elimination of laws and policies that dictate how pain should be treated, no amount of revisions to the guideline will not undo the damage the CDC’s recommendations have already caused. 

“It should be made clear to the doctors willing, but currently afraid, to prescribe opioids now for fear of fines, loss of income and even jail, that they won't be penalized for properly caring for their patients,” said one patient. “These doctors feel their livelihood has been threatened just for doing their job, which is to help people in pain. They are no longer doing that.” 

For more survey findings, including whether respondents think the CDC guideline should be revised or revoked, click here. You can see the full survey results here.

The CDC recently close a public comment period on the guideline revisions. Over 5,400 comments have been received and publicly posted, which you can read here. The CDC is not expected to adopt the final version of its revised guideline until late this year.