In my former life prior to chronic pain and illness I had many important and fascinating jobs. One was as a peer reviewer for the United States National Institutes for Health (NIH), Center for Mental Health Services (CMHS), and Substance Abuse and Mental Health Services (SAMHSA); and New York State’s Education Department, Office of Mental Health, and Office of Alcohol and Substance Abuse Services. I reviewed multi-million dollar grants, provided consumer input to agencies, and served on publication committees and focus groups. When the opportunity arose to comment on the draft “CDC Guideline for Prescribing Opioids for Chronic Pain”, I looked forward to reawakening my peer reviewer skills to objectively identify the strengths and weaknesses of the document.
Unfortunately, I found it near impossible and beyond frustrating to review this document in an objective manner. The guideline is not organized like a typical guideline or tool kit. It is nothing more than a literature review of the harms and risks of opioids. It is not objective, therefore, I found it impossible to be objective. It was biased which made me completely biased (in the other direction). Reading this document left me scared—really scared. It left me wondering what happened to the United States and to the rights of patients? How could this be? No consumer groups or chronic pain patients were included in their peer review or “experts” process. A huge no no. Here is the comment I posted on the CDC site (I omitted my introduction):
As a consumer and citizen, I request you halt further activity regarding these guidelines until a consumer board can be developed—one that is solely made up of chronic pain patients who have experienced primary care access issues to opioid medication. I also request you conduct focus groups of chronic pain patients who are on opioids. Only then will you have guidelines that serve the public, the primary care doctors, and the chronic pain patients.
It is imperative a section in the guideline be created detailing how adequate pain control is a fundamental right of every patient. Point to the Joint Statement from 21 Health Organizations and the Drug Enforcement Administration, “Promoting pain relief and preventing abuse of pain medications: A critical balancing act” which states “Effective pain management is an integral and important aspect of quality medical care, and pain should be treated aggressively… Preventing drug abuse is an important societal goal, but it should not hinder patients’ ability to receive the care they need and deserve” (http://www.deadiversion.usdoj.gov/pubs/advisories/painrelief.pdf). In addition, in this section provide a thorough review of the risks of untreated chronic pain, i.e. suicides, depression, unemployment, lower quality of life, etc.
Throughout this document it is mentioned there are no adequate long term studies that prove opioid medication is effective, leading the reader to believe opioid medication never helps patients long term, which is not true. If you conducted a focus group of chronic pain patients you would understand the complexities of opioid pain management and long term effect. It became clear to me this document was written in a biased manner when I read the “Effectiveness of Alternative Treatments” section. It boasted these treatments effective under 6 months. Nowhere in this document did I see a similar positive citation for opioid treatment for short term use though hundreds exist. The writers excluded the fact these alternative treatments, like opioids, had no proven long term benefits. Furthermore, the alternative pharmacological agents, i.e. gabapentin, SSRIs, NSAIDs, etc. are touted as excellent treatments with little to no risks. The writers should have included information on the hundreds of possible side effects, some very serious, each of these drugs carry. The risk of death, overdose and suicide is very real for some of these medications and literature citations stating as such was discluded.
The statistics in the Background section do not delineate criminal activity from actual chronic pain patients in a pain management type setting. It also does not define whether in overdoses there were additional drugs or alcohol contributing to the overdose (polydrug overdose) and whether these overdoses were legitimate pain patients or illegally obtained prescriptions. These guidelines should not include such statistics. This is not a paper about criminal activity and misuse. Only statistics for actual pain patients should be included.
Information must be included describing the fact primary care doctors may be the only opioid prescriber in their area as most pain management doctors no longer manage chronic pain with opioids and specialists refuse to prescribe. Primary care doctors have by default become pain management doctors. As such, pain patients should not be punished for this trend. I did like that you included a few sentences encouraging physicians to be compassionate. Please expand on this. Most of us are treated like a nuisance and criminal. Include information on the difference between physical dependence, tolerance, and addiction/misuse of opioid medications.
Information about actual pain conditions is slim, which is disconcerting. The fact you include cataracts as a painful condition and not severely painful conditions like chronic pancreatitis, complex regional pain syndrome, shingles, back and spine issues, trigeminal neuralgia, endometriosis, adhesion pain, kidney stones, and more shows the lack of familiarity of the team of writers with true chronic pain populations.
Teach patients basic opioid safety—keeping the opioids locked away and out of teenagers’ hands. Many patients are naïve to think their teens would never consider experimenting with their meds or visitors won’t snoop through a medicine cabinet. Providing real-world information will prevent unnecessary overdoses NOT limiting chronic pain patients their pain medication. Also, the naloxone section should be removed or limited to a sentence. True chronic pain patients rarely experience overdose and should be dealt with by emergency personnel.
—End of comment—
The CDC is clearly not the appropriate agency to spearhead opioid prescribing guidelines. They are good at authoring literature reviews on ebola and trying to find cures for diseases. They are NOT equipped to publish guidelines of this manner. This is not an epidemic and they are incapable of being objective. A document like this must be objective and unbiased.
Brooke Keefer is a mom to three sons ages 28, 19, and 4 and has a 2 year old granddaughter. Brooke has a Bachelor of Science degree in Mathematics from the State University of New York at Albany. For over 15 years she worked as a not-for-profit director, lobbyist, advocate, and a grants writer, manager, and reviewer in the field of children’s mental health. Brooke suffers from several painful conditions—sphincter of oddi dysfunction (a defect in the pancreatic/biliary valves), chronic pancreatitis, and fluoroquinolone toxicity syndrome (long term adverse reaction of the nervous system to Levaquin). Though these have disabled her, she writes health articles, advocates for patient rights, and runs the Sphincter of Oddi Dysfunction Awareness and Education Network website, www.sodae.org.