By Pat Anson, Editor

Over two-thirds of pain patients say their opioid medication has been decreased or stopped since the CDC adopted its opioid prescribing guidelines, according to a new survey that also found over half of the patients have considered suicide since the guidelines were implemented.

A total of 1,978 patients participated in the survey, which was conducted through social media and online support groups in recent weeks. The survey was designed by Lana Kirby, a Florida paralegal and chronic pain sufferer who became frustrated by difficulties she faced in obtaining opioid pain medication.

Although unscientific, the survey results are the first broad indication of the impact the CDC guidelines are having on both physicians and patients. Those guidelines, which discourage primary care doctors from prescribing opioids for chronic pain, are meant to be voluntary but are being widely implemented by many different prescribers, according to survey.

“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,” said Terri Lewis, PhD, a patient advocate and researcher who conducted an analysis of the survey.

“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.”

"I am afraid to tell the doctor what I need," said one patient.

“My doctor said he is afraid of the DEA and CDC,” said another.

“My doctor said I cannot be cured so there is no point in treating me for pain,” wrote one patient.

"Because my doctor was arrested other doctors have refused to take on his patients for treatment," said another.

Over 68% of patients said their opioid pain medication has been decreased or discontinued since the  guidelines were released in March.  Nearly 45% were warned by their doctor that additional decreases will be necessary. And just over 50% said they had considered suicide as a way to end their pain.

“It is important to note that CDC’s guidelines are directed to primary care physicians with the suggestion that they should be cautiously and conservatively applied to chronic pain patients with complex needs. That message does not seem to have been received at the physician level, as both primary care and Board Certified pain management practitioners are uniformly applying extreme prescribing restrictions to the regimens of those who replied, even where they had been in long term successful treatment for extensive periods of time without difficulty,” said Lewis.

Other survey findings:

• 75% of patients said they are not receiving adequate pain control
• 57% said they had been discharge or abandoned by a doctor because they need opioid treatment
• 44% said they had problems getting a prescription filled at a pharmacy
• 90% said their pain levels, activities and social interactions have worsened
• 97% said they have never been addicted or required treatment for drug abuse

Nearly four out of ten patients (39%) said they had been told by a doctor that they must have an operation or invasive procedure, or they will be discharged from the practice or have their medications reduced.

“Increasingly, respondents are being threatened with pain care protocols that are not optimal, such as epidural injections (or) 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 Lewis.

The CDC has had very little to say about the impact of guidelines since their release. As Pain News Network has reported, a top CDC official recently wrote a letter to one patient saying the guidelines were only meant as a “guide” for primary care providers “as they work in consultation with their patients.”

“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,” wrote Debra Houry,  Director of the CDC’s National Center for Injury Prevention, which oversaw the guidelines’ development.