This article, in a slightly edited form, first appeared on Pain News Network on March 27, 2021.

Jack Schwartz (a pseudonym) is a child of Holocaust survivors. As a small boy, he was traumatized by observing his older brother become addicted to heroin. He also developed a substance-use diagnosis that he believes was due, in part, to childhood PTSD. A 64-year-old psychotherapist, Schwartz has been in chronic pain since a 1996 car accident injured his neck.

Although he has a history of substance use disorder, he has used opioids to manage his pain only in the past several years. His personal physician, who retired at the end of 2020, wrote a letter stating Schwartz has been prescribed Norco (a combination of acetaminophen and hydrocodone), has been compliant, and has shown no signs of abuse for the previous four years. The retiring doctor hoped Schwartz would be able to find someone to continue prescribing his Norco.

Schwartz has not yet found a new physician. In the meantime, his insurance company notified him that they refused to pay for his medication, citing the Centers for Disease Control (CDC) guidelines and their own opioid usage guidelines which state, “…narcotics are not the treatment of choice for chronic nonmalignant pain.”

He contacted me after reading an article I wrote, “Ironic Partners: Suicide Prevention and Pain Awareness Month.” Schwartz said he was suicidal and asked me for advice. We agreed that sharing his story might help others in similar positions.

CDC Guidelines Are Not the Standard of Care

Regrettably, Schwartz’s situation is not uncommon.

While the CDC has admitted its guidelines have been misrepresented, some payers, regulators, and rigid policies still cite the guidelines as if they are the standard of care.

On its alternative-treatment fact sheet, “Nonopioid Treatments for Chronic Pain,” the CDC offers recommended treatments for common chronic pain conditions including migraine, low back pain, osteoarthritis, fibromyalgia, and neuropathic pain. Why is the CDC providing medical treatment recommendations?

Who Should Write Clinical Guidelines?

Cardiologists and heart surgeons should develop recommendations for managing heart disease. Endocrinologists should offer recommendations for managing diabetes. Infectious disease specialists should make recommendations for managing infections. Addiction specialists should provide recommendations for treating addiction.

Pain specialists should develop treatment guidelines for treating pain.

The way it should work is this: Professional organizations representing medical specialties should develop treatment guidelines. Whenever possible, input should be solicited from patient stakeholders for the particular guideline. The role of government organizations such as the NIH, FDA, CDC, and DEA should be to provide data and resources to these groups so they can initiate and revise treatment guidelines as the science evolves.

Specialists should lead the way to ensure patient care is clinically driven and patient-centered. Non-clinicians, such as government officials—even if they have medical degrees—should not make treatment decisions or create guidelines for specialists and their patients.

Walking Back the CDC Guideline for Prescribing Opioids

In my view, it was a mistake for the CDC to publish the CDC Guideline for Prescribing Opioids for Chronic Pain in 2016. Before it was published, I predicted people in pain would suffer and that the guideline would not reduce the number of opioid-related overdose deaths. Unfortunately, I was correct.

As most of the readers of this editorial know, many providers, patients, and their loved ones have urged the CDC to revise or withdraw the guideline.

Even the American Medical Association (AMA) has urged the CDC to make “significant revisions” to the guidelines. Deborah Dowell, M.D., M.P.H., Tamara Haegerich, Ph.D., and Roger Chou, M.D., who penned the CDC guideline, wrote a commentary about its misapplication that was published in The New England Journal of Medicine.

The admission that the CDC’s guidelines were harmful was long overdue. Now the question of how the guidelines should be changed must be addressed. Hopefully, the CDC will consider input from people who have been harmed the most by the prescribing guidelines and will revise their recommendations accordingly.

You Can Help

In an effort to gauge the opinion of providers, people in chronic pain, and the general public, Pain News Network is conducting a survey to find out what patients and clinicians hope to see in guideline revisions. So far, Pain News Network has received more than 2,200 responses.

I encourage you to participate in the survey, if you haven’t already. Your voice matters. I also urge you to ask your provider(s), whether they prescribe opioids or not, to complete the survey. Ask for their help and input. You can simply send them a link to this column.

Jack Schwartz continues to struggle with intractable pain and suicidal feelings. He, and millions of people like him, need for your opinion, and your provider’s perspective, to be heard. Maybe then more rational decisions will be made regarding the use of opioids for the treatment of pain.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

You can find him on Twitter: @LynnRWebsterMD.