Centers for Disease Control and Prevention
Injury Prevention Center
We are people with progressive, incurable diseases or severe, life-altering injuries, many of us with conditions that rate very highly on the McGill Pain scale (1). Some of our conditions are Chronic Regional Pain Syndrome, Ehlers Danlos Syndrome, Multiple Sclerosis, Cancer, Adhesive Arachnoiditis, Sickle Cell and other blood-centered diseases, and hundreds of known diseases that have intense, unrelenting pain as a symptom. All these diseases and/or injures are known to cause severe suffering in patients, often for a lifetime. Also joining this letter are our loved ones and the clinicians, researchers, and academic professionals who support us.
History has shown us that the CDC Opioid Prescribing Guidelines of 2016 injured innumerable patients with long-term pain, caused massive harm, suffering, suicidal ideation, and even death by overdose or suicide in patients with severe pain, as clinicians interpreted the 2016 Opioid Prescribing Guideline as the rule of law. Many of us have been subjected to involuntary tapering or have been abandoned by the healthcare system. Others are terrified of losing access to needed medication and care.
The CDC itself recognized that its Guideline was being widely misapplied, which resulted in grave harm to patients (2). Multiple articles were written about the harms being suffered by patients who were experiencing pain, yet, while CDC acknowledged the harm, it did nothing to reverse it. (3)
Once again, we find ourselves facing another CDC Guideline, focused on the treatment of pain, except this time, it purports to be a Clinical Practice Guideline. In its current iteration, it stands to affect the clinical treatment of pain in every setting – the full span of pain from acute to subacute to chronic. Additionally, this “Clinical Practice Guideline” was made with little input from specialists in pain management, oncologists, rheumatologists, emergency room physicians, obstetrics or gynecology – i.e., all of the clinicians that commonly treat pain.
Thus, as a community of patients with pain, those that care for us, and those that love us, we respectfully request that the entire document be withdrawn. The CDC Injury Prevention Center, which created this document, does not have the professional expertise, knowledge, or qualifications to write such a prescriptive Guideline.
While requesting the withdrawal of the entire document, we wish to draw attention to several other reasons why this document is unacceptable:
• The document relies heavily on the questionable concept of Morphine Milligram Equivalents, (MME). The FDA itself hosted a recent seminar that examined the many substantial flaws of MME calculations (4). The flaws of using MME as a metric for limiting necessary medical therapy have been well documented (5).
• A broad range of evidence showing benefit of opioid therapy, as well as harms from opioid tapering, were excluded from the CDC Draft Guideline update. According to proper procedures for both Systematic Reviews and Development of Guidelines, this evidence should have been included in the critical evidence reviews.
• At the center of our objections is the very foundation of this effort: a massive conflict of interest, beginning with the formation of PROP, an astroturfing organization, which has been allowed disproportionate influence on the development of both Guidelines, continuing through the appointment of multiple PROP members to all aspects of these Guideline developments. PROP members have served as Core Experts, Peer Reviewers, and Technical Experts, even when their conflicts of interests should have eliminated them from these positions. (6)(7).
Based on these, and multiple other problems with these Guidelines, many of which have been pointed out by organizations and experts worldwide, we must insist that the CDC remove itself from the development of Clinical Practice Guidelines for the treatment of pain. It is simply outrageous that the Injury Prevention Division of the CDC, whose expertise is limited to epidemiology and disease prevention, has been allowed to invade this complex area of medicine. This must end, now.