By Pat Anson, PNN Editor

Nearly 5,400 people have left comments in the Federal Register sharing their experiences and concerns about the quality of pain care in the United States. Tuesday was the final day for people to make public comments, which the Centers for Disease Control and Prevention will consider as it updates and possibly expands its controversial opioid prescribing guideline.

Most of the respondents are patients who blame the CDC for their poorly treated or untreated pain. Although the 2016 guideline was only intended for primary care physicians treating chronic pain, the CDC’s recommended limits on opioid prescribing have been widely adopted as policy by federal agencies, states, insurers, pharmacies and many doctors — who use the guideline as excuse to take people off opioids or greatly reduce their doses.  

“The day the CDC guidelines came out, I was taking 400mg oxycodone and leading a productive life. Then I was taken completely off all my medication. I went through hell and wanted to kill myself,” wrote Wren Lum. “I lost my job because I couldn't work anymore. I could no longer get out of bed. Lost my house because I could no longer pay the mortgage. CDC, you ruined my life.”

“I am not being prescribed the right dose of pain medication and it’s all because of the CDC guidelines. I used to be on three times the amount of oxycodone that I am now on and it’s taken away my ability to walk. I’m only 34 years old. This is devastating to me and my family, and now have such a lack of quality of life,” wrote Holly Letendre.

“I was given opioid medicine for 8 years. I could work, volunteer, socialize, care for my children, my husband, my home, and importantly, myself. I now shower every 10-14 days, it's too painful. When I do, I am curled up in horrendous pain for hours afterwards,” said Donna Johnson. “This is due to the CDC’s guidelines. It was then that doctors became afraid to prescribe, even to compliant patients living happy lives. I want my life back.”

The CDC is planning to update or expand the guideline to include recommendations for treating short-term acute pain and tapering patients safely off opioid medication. It took the agency three years to acknowledge that some patients were being taken off opioids too rapidly, putting them at risk of withdrawal, uncontrolled pain and suicide.

“My life has become miserable. I suffer every day after my doctor cut my dosage by almost 90 percent. Ninety percent! My blood pressure meds have had to be tripled. I have gained weight since I am now for all intents and purposes nearly bedridden,” said Kendal Rice in her comment to the CDC. “You people are just monsters. Every one of you. You certainly are not healers.”

PROP ‘Urgent Action Request’

Thousands of people – mostly pain patients and their loved ones – left comments critical of the CDC guideline. That prompted anti-opioid activists to launch their own campaign in support of the agency.

Dr. Andrew Kolodny, founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP), emailed an “urgent action request” to supporters last night, urging them to leave their own comments. He claimed without any evidence that the backlash against the CDC was bankrolled by drug companies.

“The CDC has been receiving pressure to weaken the recommendations in its 2016 CDC Guideline,” wrote Kolodny. “Not surprisingly, much of this pressure is coming from pain organizations funded by drug companies and from opioid-dependent pain patients. Many of these patients are fearful and angry because they're having a harder time finding clinicians willing to prescribe opioids aggressively.” 

In a joint letter to CDC Director Dr. Robert Redfield, Kolodny and several PROP members said the guideline was “tremendously helpful” to primary care physicians and has led to “downward trends in inappropriate prescribing.” The letter also claimed that long term use of opioids often makes pain worse and leads to “intolerable negative mood changes” in patients. 

“We know from clinical experience and from controlled studies that opioids are rarely beneficial for chronic pain,” Kolodny wrote. “Now is not the time to reverse the gains of the 2016 guideline. The focus now should be twofold: to find better ways to help people already on opioids and improve access to better means than opioids to treat chronic pain.” 

Alternative Treatments

Many patients say they’ve already tried non-opioid treatments and found them ineffective for severe pain. 

“The majority of antidepressant and anti-seizure medications available today pose just as much a risk for dependency, withdrawal and death as opioids, if not more. Yet these medications are prescribed 1,000 times more and have much more severe side effects and withdrawal effects,” wrote Lois Luesing, who says her 36-year old son is housebound and unable to work because of chronic pain.

“He’s tried numerous available Rx meds, creams, alternative treatments, supplements, patches, etc. and nothing works. The only medication that will work to relieve his pain and give him his life back are opioids, yet we can’t find a doctor to prescribe this life-saving medication for him. It’s not his fault that’s the only thing that works. There are millions of others that this is the same for.”

Some patients have found alternatives that do work.  Although the herbal supplement kratom isn’t even mentioned in the CDC guideline, hundreds of kratom users left comments in the Federal Register asking the CDC not to regulate kratom.  

“Kratom is a life saver for me. I was being personally prescribed opiates for almost 20 years due to chronic pain. Although I always took as directed and never let them ruin my life, there's a very fine line to not go over the edge with them. They are so addictive and pretty dangerous for that matter. Since finding kratom this past year, I've been able to stop taking the opiates,” wrote Michael B. “Please don’t take this wonderful plant away from us. I assure you it will end up destroying many people's lives.” 

An update to the CDC guideline is not expected until late 2021, nearly six years after the initial guideline was released.  The agency has funded a series of new studies on opioid and non-opioid treatments for chronic pain.

The report on opioids was released in April. It concluded that opioids were no more effective in treating pain than nonopioid medication, and that long-term use of opioids increases the risk of abuse, addiction and overdose.