By Pat Anson, PNN Editor

Proposed changes to the CDC’s opioid prescribing guideline are inadequate and will not undo the damage caused to patients and the practice of pain management, according to a large new survey by Pain News Network.

The Centers for Disease Control and Prevention released a long-awaited draft revision of its 2016 guideline in February, giving healthcare providers more flexibility in how they manage pain with opioids. Although voluntary, the original guideline was widely misapplied as a rigid “standard of care” by many states, insurers, doctors and law enforcement, causing millions of patients to be taken off opioids or tapered to lower doses.

The revised guideline states that “opioids can be essential medications for the management of pain” and encourages doctors to use their own best judgement when prescribing them. But many patients and providers believe the changes don’t go far enough and may even make the crisis in pain care worse.

“Appreciate the effort, but too little too late. These revisions are like trying to prevent disaster by course correcting the Titanic after it hit the iceberg,” one patient told us. “The revisions offer no protection against overzealous DEA interference and prosecution, and are meaningless in court. Until the draconian laws spawned by the guidelines are changed, things will only continue to get worse.”

“I believe it is a small step in the right direction, though the damage has already been done. The doctors who truly care about their patients and would like to help them are still terrified of the potential repercussions from the governing bodies,” another patient said.

“In 45 years of treating patients with pain, I have never seen it so difficult for patients to have their reports of pain taken seriously and get access to pain treatment,” a doctor said. “Patients often feel treated like addicts, and have had many professionals and family members supporting that erroneous and stigmatizing label.”

‘I Barely Leave the House’

Over 2,500 patients, providers and caregivers in the U.S. responded to PNN’s survey, the vast majority (94%) identifying themselves as patients with either chronic or short-term acute pain.

Over half the patients (57%) rated the quality of their pain care as poor or very poor. Only one in five (20%) rated it good or very good.

This was the fifth survey we’ve conducted on the CDC guideline. Like the others, people expressed strong opinions about the agency’s recommendations and how they’ve impacted pain care.

“My pain medication was involuntarily reduced by 75% since the the last guideline was published,” a patient told us. “Now I barely leave the house. I can't do my physical therapy due to excessive pain.”

“The 2016 guidelines caused me to have to go on disability, spend 20 hours a day in bed due to severe back pain, and sell a bank consulting company that I had run successfully for 20 years. The CDC needs to get out of pain medicine,” another patient said.

Should CDC Have Opioid Guideline?

When asked if the CDC should even have guidelines for pain management and opioid prescribing, eight out of ten respondents (84%) said no. Many said the agency overstepped its authority.

“It is outside the CDC's charter and purpose to publish opioid guidelines. If an opioid guideline is needed, that would be the FDA's responsibility. Why is our government even allowing the CDC to do this? They are expending resources on something that is unnecessary and outside of their area of responsibility,” a patient wrote.

“The "D" in "CDC' is for "disease." Pain is not a disease. CDC should stick to its mission,” said another patient. 

“The CDC should not be allowed to regulate pain medications. The CDC conveniently made a disease to justify getting involved in an area that was not their area to regulate. The guidelines were biased against chronic pain. The (guideline) panel was biased by people with preconceived ideas,” a provider wrote. 

‘Made Each Day a Living Hell’

Asked if the 2016 opioid guideline improved the quality of pain care or made it worse, nearly nine out of ten respondents (88%) said pain care in the U.S. was significantly worse. Only 2% believe the guideline improved pain care. 

“I had a friend that was seeing a pain management physician, and he was on high dose opiates for 10 years due to a car accident, and because of the 2016 guidelines, his doctor became very fearful and took him off his meds,” a patient told us. “That person committed suicide.”

“CDC regulations may have saved the lives of some addiction-prone people, but it's made each day a living hell for millions of us with progressive chronic pain,” another patient said.

“The damage has been done. Patients are still dead, physicians are still terrified, and these deaths and loss of practice were totally unnecessary. It is a disgusting example of ill-informed government over reach,” said another.

‘Pain Drove Me to Street Drugs’

Perhaps the most damning assessment of the 2016 guideline is that it made the opioid crisis worse – an opinion shared by nearly eight out of ten survey respondents (78%). When denied access to opioids, some patients have turned to street drugs.

“Chronic pain drove me to use street drugs, including fentanyl, when all I needed was a doctor to prescribe a safe medicine for me,” a patient told us. “It's messed up I have to do this for relief.”

“Patients know about their pain, doctors know their patients, the CDC does not know individual patients. Making it harder to get much needed medications is what causes people to try and obtain opioids illegally,” said a patient.

“People in chronic pain who cannot get relief from doctors are turning to street drugs - and THEN getting hooked. The CDC is CAUSING drug addiction,” wrote another patient.

“The people who benefit from the CDC guidelines are lawyers, politicians and drug dealers. The drug dealers can sit back and rake in the money while the CDC, lawyers and politicians do their work for them.”

 ‘Revoke the Guidelines’

What should be done with the 2016 guideline? Should it be revised? Can it be fixed? Nearly two-thirds of respondents (63%) believe it should be completely revoked or withdrawn. About 36% believe changes are needed to make opioid medication more accessible.

“The CDC needs to completely revoke the 2016 guidelines and let trained professionals treat their patients for pain. Unfortunately, some of the damage that was done is irreversible and some patients have lost their lives as a consequence, and that lies squarely on the shoulders and consciousnesses of the CDC,” a provider told us.

“DESTROY IT NOW! No updates are needed,” a patient wrote. “Just get rid of these guidelines completely and get out of the middle, coming between a doctor and his pain patient, as well as the patient and their pharmacy.”

“Revoke the guidelines and revoke the CDC’s ability to have anything to do with medications, leave that to the FDA and doctors. Also revoke the DEA’s ability to prosecute and/or harass doctors and make them focus on drug dealers and cartels,” another patient wrote.

‘CDC Has Lost All Credibility’

Given all the problems created by the 2016 guideline and the lengthy delay in revising it, many people have lost faith in the CDC — once one of the most trusted government agencies in the U.S. Asked if the CDC could be trusted to handle the revision of the opioid guideline in an unbiased and scientific manner, nearly 96% said no.

“I do not and will never trust them. This revision is nothing more than putting lipstick on a pig,” a patient said.

“The CDC has lost all credibility with me. They lie, falsify records to suit their argument, pick and choose things in studies to support their argument, and they have anti-opioid zealots writing these guidelines. Clear conflict of interest! CDC and DEA need to get the hell out of my doctor-patient relationship!” said another patient.

“The CDC were warned their Guidelines would harm patients, and they moved forward anyway. They refused to monitor harm to patients or acknowledge it. The CDC's unethical behavior continues over and over at shocking levels. They have broken the public trust over and over. Nothing they've written can be trusted after these deliberate and intentional unethical choices,” a patient wrote.

For more survey findings, including what respondents think about the CDC’s new guidance about doses, click here. You can see the full survey results here.