By Dr. Lynn Webster, PNN Columnist

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 disorder of his own 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 for 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 would not pay for his medication, citing the CDC’s opioid prescribing guideline and their own opioid policy, which states that "narcotics are not the treatment of choice for chronic nonmalignant pain."

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

Who Should Write Clinical Guidelines?

Regrettably, Schwartz’s situation is not uncommon. Many insurers and regulators have adopted rigid policies that cite the CDC’s voluntary guideline as if it was the standard of care. The CDC has admitted its guideline is being misapplied and is working on an update, but so far the agency has done little to correct the problem.

In fact, the CDC has gone even further than the guideline, producing a fact sheet for physicians, “Nonopioid Treatments for Chronic Pain,” in which it recommends alternative medications for common chronic pain conditions including migraine, low back pain, osteoarthritis, fibromyalgia, and neuropathic pain.

Why is the CDC making medical treatment recommendations?

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. And it is pain specialists who should develop treatment guidelines for treating pain.

The way it should work is this: Professional organizations representing medical specialties develop treatment guidelines. Whenever possible, input should be solicited from patient stakeholders. The role of government organizations such as the National Institutes of Health, 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 be making treatment decisions or creating guidelines for specialists and their patients.

Walking Back the CDC Guideline

In my view, it was a mistake for the CDC to release the guideline 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.

Many providers, patients and their loved ones have urged the CDC to revise or withdraw the guideline. The American Medical Association has urged the CDC to make "significant revisions."  

The three co-authors of the guideline, Deborah Dowell, MD, Tamara Haegerich, PhD, and Roger Chou, MD, even wrote a commentary for The New England Journal of Medicine in 2019 acknowledging that their recommendations were being misapplied and were “likely to result in harm to patients.”

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

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. Lynn 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.