Given our family history in the trenches of autoimmune arthritis, I was asked to support, and blog about the National Pain Strategy (NPS) petition. Well, I never take things at face value, so I decided a little investigative journalism was warranted. I am in no way affiliated with the NPS, and opinions contained within are my own.
There are brilliant tools for pain management in the National Pain Strategy, and it is a thing of beauty to see acknowledgement of attitudes, biases, and patient stereotypes as barriers to treatment. On the surface, this seems a reasonable and broad-based approach to caring for patients in chronic pain. In reality and practice, rheumatology patients are now bearing the undue burden of cautionary care.
Autoimmune arthritis patients are being lumped into this crisis purely by association with necessary treatment. It feels as though we are under assault by legislation, medical personnel, the media, and society. Truth is, we must hedge against ourselves in treating our unceasing chronic pain. Each prescription bottle of opioids is a Hedge Fund: balancing each day’s productivity against future physical activity vs current dosage and disease progression.
Despite the NPS acknowledgement that “74-96% of chronic pain patients use their prescriptions without suffering from opioid addiction,” rheumatology patients are suddenly hitting roadblocks in acquiring opioids to facilitate life. Not existence, but life.
Earlier this year, my rheumatologist moved across the country. I wrongly assumed his diagnosis and plan of management would carry over. After reviewing my lab results, and a brief, clothed exam, my new rheumatologist declares my disease is under control. Ah, thank the heavens! I responded that my labs looked the same the day I was diagnosed with Seronegative Rheumatoid Arthritis.
She responded by reducing my opioid dosage by 60%. And just for glee, my body decided to view all NSAIDs as allergens nine years ago. The body was done with these, finis. Try selling an NSAID allergy to a new physician. I am most fortunate that my previous rheumatologist documented my reaction as a severe allergy.
The mission of the National Pain Strategy (full draft here) is a brilliant and reasonable collusion of physicians, researchers, and patient input. Yet somewhere between brilliance and reality, autoimmune arthritis patients are suffering. We are forced to ration our pain relief. In real terms, this means rationing our functionality as productive humans — both physical and mental activity is hampered. People who have never experienced the pain of autoimmune arthritis cannot grasp the distraction of unrelenting systemic pain.
I’ve been puzzled at the sudden focus on this Opioid Crisis, and mused at all of the other public crises we could declare. I looked into the sudden escalation of opioid prescription abuse, and it seems my hunch is shared:
Bob Twillman, executive director of the American Academy of Pain Management said the “new initiative is a fine idea,” but he’s more concerned with how the National Center for Health Statistics (NCHS) reported its data this year.
“It appears to me that illegally-manufactured fentanyl is being lumped in with legal prescription opioids, accounting for the apparently huge one-year increase in prescription opioid-related overdose deaths.” He added: “I’m very concerned that this inappropriate lumping (assuming that is what is happening) could result in even greater pressure on opioid prescribing, further increasing the access problems we’ve been hearing so much about.” – Arlotta, CJ. White House: Opioid And Heroin Overdoses Are On The Rise (Contributor) Forbes.
I have to ask, what is the motive of declaring a crisis? The bipartisan Comprehensive Addiction and Recovery Act (CARA) was signed into law 22 July 2016. The act authorizes $181 million in new funding each year, which must be funded annually through appropriation.
In general, the mission of the National Pain Strategy is a brilliant and reasonable collusion of physicians, policy makers, researchers, and patient input. Still, I have to ask: who profits in the Opioid Crisis? Clearly not the autoimmune arthritis patient.
We are on the front lines of a war in which our immune systems fired the first shot.