The answer to this question falls into the category of ‘what hasn’t been tried’ (with various degrees of success or failure)? The nearly 5,000 persons who responded to this survey addressed objective questions and used the open comments feature to add clarifying information about their responses. Both approaches have offered enormous opportunity to understand the experience that you are having managing your chronic illnesses and associated pain in this challenging environment. So this installment offers a snapshot about the methods folks are using to cope with the reduction of access or changes to their care routines. First, let’s address some current contextual influences.
Current Pharmacy Utilization
An estimated 50 million people of all ages are actively dealing with chronic pain and of these more than 19 million persons are dealing with intractable pain. In 2018, 5.8 billion prescriptions were dispensed, up 2.7% from 2017 (IQVIA, 2019). Traditional medicines made up 97.8% of prescriptions in 2018 and most large therapy areas grew faster than the total market. Pain medicines, which include non-narcotic drugs, declined by 21 million prescriptions, driven by the declines in number of opioid prescription issued.
Chronic prescriptions (>90 days) account for more than two thirds of prescriptions. Prescriptions for specialty medicines − those that treat chronic, complex or rare diseases, grew by more than 5% for the second year even though these medicines account for only 2.2% of prescriptions and have little impact on the overall growth of dispensed prescriptions. According to market trends tracked and published by IQVIA (2019), 127 million specialty prescriptions were dispensed in retail and mail pharmacies in 2018, up by 15 million since 2014.
The number of patients with autoimmune diseases being treated annually is up 63% since 2013, an increase of six million patients. This includes persons with Ankylosing Spondylitis (11.4%), Ulcerative Colitis (23.9%), Crohn’s Disease (14.3%), Psoriatic Arthritis (17.1%), Psoriasis (16.6%), Rheumatoid Arthritis (6.3%), and all other autoimmune indications (3%). On average, survey respondents reported 6 or more diagnoses for which they need ongoing treatment distributed across 300+ ICD 10 codes.
Use of prescription opioids in 2018 declined by 17% or 29.2 billion MMEs. Changes in state regulations, clinical patterns, and insurance reimbursement patterns, together with implementation of CDC’s Guidelines for the Treatment of Chronic Pain and enforcement actions by the DEA, shifted utilization of high-dose prescriptions downward by 43% from a high in 2011.
Theorizing that prescription drug monitoring programs (PDMPs) and risk scoring algorithms will result in reduction of deaths by overdose and emergency room visits, PDMPs have been adopted by 49 states and risk scoring tools have been deployed into pharmacy and insurance operations, further limiting the prescribing of high doses of prescription opioids. This has led to many reports of patients for whom step therapies have been implemented, patient abandonment, or reports of suicide. There is little to indicate that PDMPs and risk scoring tools have had a positive effect on overdoses, suicides, or illicit drug use.
The rate of prescription abandonment increases steadily as costs exceed $50, where 31.2% and 27.6%, for commercially insured and Medicare Part D, respectively, abandon new prescriptions. Among survey respondents, 36% reported that the cost of healthcare remains steady at <25% of their annual household income, while 21% report 25-50%, 6% >50% of their annual income. This has led some to abandonment of prescriptions and a search for other methods of addressing pain reduction to increase daily function.
The HHS Pain Task Force
On May 9 and 10, 2019 the HHS task force completed its charge under CARA to produce a set of recommendations regarding the address of chronic pain and the use of opioids as a primary therapeutic tool. Even as members of the task force analyzed more than 9000 comments and incorporated the feedback into their comprehensive review, we are still left to determine as a community what it will all mean given the variability that is readily observable among persons who develop and live with chronic and intractable pain.
This survey is an attempt to address the current experience of persons with multiple chronic illnesses in order to break down stigma and begin to reset our ideas about the role that opioids and other tools play in allowing people to live their best lives during what is without a doubt the most challenging of times.
Table 1 identifies 85 different coping non-pharmaceutical methods (ACAM) that 4837 survey respondents identified as having attempted with various degrees of success or failure. These methods generally fall into 12 categories described here:
- ACAM (Acupuncture, Chinese medicine, Yoga, Tai Chi, and more)
- Animal assisted therapy (pets, service animals, comfort animals)
- Art therapy (arts, music, writing)
- Electric stimulation (TENS, deep brain stimulation, spinal cord stimulation (SCS)
- Esoteric treatments
- Geno/Phenotyping (determination of genetic characteristics in order to identify potentially better drug utilizations)
- Medical Cannabis (CBD, Vaping, Smoking, edibles, and lotions, and other configurations allowed by states)
- Medical equipment (assistive technology, adaptive devices, home modifications)
- Nutritional supplements (Kratom, Nutraceuticals, vitamins, dietary changes)
- Over the counter drugs (all types of lotions, pain OTC pain relievers, alcohol, cigarettes)
- Physical and occupational therapies (PT, OT, Rolfing, massage, myofascial release, etc.)
- Psychoeducation and counseling (EMDR, Biofeedback, CBT, mindfulness therapy, and more)
Treatment Delivery Models
The methods through which treatment is delivered and received as noted by respondents is found in Table 2. There is significant variation by state, insurance plan, and characteristics of the local medical systems. Each state Board of Medicine regulates the delivery environment based on state regulation and available resources. There are by no means equivalent systems between the states. Some states struggle with geography, health system capacity, and payor source availability. Some states lack uniform Medicaid expansion which makes a large difference for some groups of affected patients.
The difference between insurance contracts and regulatory definitions imposes real challenges to ensure that people are served properly and that the data generated by these interactions means the same thing across systems. This is a challenge that we must grapple with if we are to get to solving the twin crises of caring for persons with chronic and intractable pain, and those who need care for the disease of addiction.
Respondents reported more than 120 various medications distributed across 21 classes of drugs (Table 3). Of concern here are treatment stabilization, involuntary taper, step therapy, and imposition of alternative medications. Because we are all concerned about the impact of multiple drugs interacting with multiple progressive diseases (polypharmacy) I put the individual self-reported drugs into the Drugs.com interactions checker (https://www.drugs.com/).
I looked for adverse interactions of individual drugs with other drugs (Table 4.a) and with specific diseases (Table 4.b).
The single largest group that raised safety red flags are the Gabapentinoids and anticonvulsants which have become the most frequently substituted for opioids and other controlled substances among respondents.
It’s Essential That We Challenge the Conventional Wisdom
The current national dialogue posits that addiction springs from exposure to prescription opioids by any number of methods and, that opioids are ineffective for long term support of chronic and intractable pain. Slowly, the recognition is dawning that –
- patients are not passive about their healthcare choices but are captive in a system that is rapidly removing choice without evidence of efficacious outcomes;
- both addiction and chronic pain are unique disease processes that may or may not share characteristics for individuals and treatment models-clearly the answer is person specific;
- the prescription opioid crisis has been subsumed into a crisis of illicit street supplies that includes the availability of carfentanyl analogues, heroin, methamphetamine, cocaine, and things that we haven’t dreamed up yet;
- the influence of economic and social stressors is real and exerts a tangible (if poorly understood) role in health outcomes; and
- deaths of despair, polypharmacy, overdose, and suicide are different with origins that are still elusive to us.
We have a lot to learn about these issues. The only way to address this is for us to begin a conversation that sets aside the popular dialogue (which is full of error, stigmatizing language, political interference, and just plain zealotry) and get to a granular level that begins to break this stuff into its parts, examines the natural histories and lived experiences of persons who are affected. My next step is to determine how diagnoses and interventions are associated. That will be the next installment.
IQVIA’s 2019 assessment is located at this link: https://www.iqvia.com/-/media/iqvia/pdfs/institute-reports/medicine-use-and-spending-in-the-us—a-review-of-2018-outlook-to-2023.pdf
If you are interested in pursuing more information about any of the alternative methods addressed here, check out some of these links: