Who are ‘You People’ Anyway?

By Terri Lewis Ph.D.

Editor’s Note: When the National Pain Report helped promote Dr. Lewis’ survey of chronic pain patients submitted to the FDA in advance of Monday’s Public Meeting on Patient-Focused Drug Development for Chronic Pain, we asked her to provide a quick summary of who responded and what they said.

A total of 1687 persons responded to this survey tool.  The majority of respondents are women (80%), men came in at (19.5%), with the balance reporting as ‘do not wish to declare or other gender’ (.5%).  The vast majority are persons with chronic pain (95%), care partners to someone with chronic pain (1%), a family member of a person with chronic pain (3%), or persons who reported as serving in a helping role (friend, neighbor, health care provider .6%).  A number of persons revealed that they are dealing with chronic pain while care giving for another person with chronic pain.  Some reported serving multiple roles as person with chronic pain and health professional.   

Among respondents, more than 80% are persons aged 40 and above – which places them in a position to be concerned about their loss of prime earning years and career progression.  The level of education ranges from high school/GED (14%), some college (27%), community college/trade school (22%), Master’s degree (16%), Doctoral degree (5%), other (4%). Some are unable to work (16%), some are working part or full time (28%), and the balance are on various forms of disability (VA, SSDI, long term disability).  Extracted occupational titles include professor, registered nurse, doctor, truck driver, teacher, public civil employee, scientist, and more). The cost of care is a pronounced and increasing problem – 35% report that health care costs consume up to 25% of their monthly household income; 21% report that 50% of their income is consumed by healthcare costs; and the balance report that 75% or more of their household income is consumed by healthcare costs related to pain support. For some, the cost of care has become so much of a burden that they are foregoing necessary care in favor of no care or alternatives that include OTCs, adjunctives, and ‘hope for the best.’  To be sure, many have attempted Tai Chi, mindfulness, and cognitive behavioral therapies only to find that it has accomplished nothing for the management of their Avascular Necrosis or Lupus.

The Center for Medicare Services (CMS) tracks multiple comorbidities through Medicare billing claims data and reports on the top 20 most frequent conditions which appear.  One might easily conclude that all respondents in this data share characteristics associated with these top 20 conditions.  But this doesn’t appear to be the case. More than 318 discrete conditions across all body systems were reported – from Ankylosing spondylitis and Adhesive Arachnoiditis to Toxoplasmosis, Transverse myelitis, Trigeminal neuralgia, to Wasting syndrome.  Some report conditions found in the top 20 tracked by CMS. By far the largest family of conditions linked to chronic and intractable pain among respondents are those associated with various forms of arthritis (arthropathies) – Ankylosing spondylitis and psoriatic, rheumatoid, osteo, facet arthritis comorbid with a wide range of musculoskeletal disorders that include degenerative disc disease, scoliosis, kyphosis, stenosis, hip and sacrum dysfunctions. Iatrogenic injuries arising from multiple interventions include infections resulting from interventional procedures (epidural injections, pump and stimulator installations), arachnoiditis, amputations, and muscle and fascial damage.  Genetic disorders and birth defects were documented that create conditions carried into adulthood. Diseases of the nervous system were documented as peripheral neuropathy, neuropathy associated with progressive diseases such as multiple sclerosis, neurofibromatosis, diabetes.  Diseases of the urological system included interstitial cystitis, medullary sponge kidney disease, and renal failure.  Respondents average 5 comorbid conditions (within and across the body systems) and have been dealing with management of these conditions for an average of 12 years.  This places respondents into alignment with the definition of multiple chronic comorbidities (MCC) tracked by HHS-CMS and defined by CDC. More than 97% of respondents indicated that their combinations of conditions have been treated through a number of interventions (more on this below) alone or in combinations with schedule II medications (opioids of various types, Ritalin).

With all of this going on, what should we expect to learn from their experiences with the current health care system? Generally, more than 50% of respondents report that they are dissatisfied with their health care interactions.  A total of 1057 persons reported that they had experienced detrimental gaps in care for a variety of reasons that include discharge from pain management (29%), loss of primary or specialty care supports or unwelcome changes to supports imposed by system issues like insurance coverage changes or closure of clinics.  Among all respondents, gaps and discharge have resulted in reductions of independent functioning (62%), use of over the counter medications to cover the gaps (28%), increased use of alcohol or tobacco to take the edge off of increases in pain levels (68%), and increased feelings of hopelessness and active consideration of suicide (28%).

More than 41% report that they have rejected services that they feel are inappropriate based on prior experience in managing their needs. For many, this has resulted in discharge from pain management. This comment reflects the thoughts of one gentleman who responded, “Throughout the years I have been discharged from pain management doctors because of regulations limiting how many patients they can have & guidelines issued by the CDC. As a result of having to try to deal with excruciating pain I turned to anything that would give me some relief such as alcohol & illicit drugs. Having massive untreated pain has also caused me to contemplate hurting/killing myself for the only time in my life. Not being able to do things due to being in constant excruciating pain has caused my wife to divorce me & take my children also. I’ve also been told that I must have multiple injections over and over (which I’m unable to afford, and that have never provided relief) if I wanted any medication.” Said another, “I was forced to have a stimulator implanted which does not touch the pain. I have had multiple nerve blocks, trigger point injections, excruciating hydro-distensions, Botox injections, and laparoscopic surgeries. I am about to have another lap with a presacral neurectomy because my doctor doesn’t want to send me to pain management, though he readily admits it may not help. There is a chance I may not be able to urinate or have a bowel movement on my own again, as well as a significant risk of bleeding during surgery, all to avoid pain medicine.” And the cost?

Respondents to this survey are not passive observers.  They have actively sought appropriate supportive care despite the imposition of conditions over which they have little choice – insurer changes, physician and clinic changes, regulatory changes, pharmacy dispensing restrictions, and step therapies.  Threatened by loss of care, they have conformed and adhered to routines that are a mixed bag of benefit for either the short or long term. So far, I have extracted more than 118 interventions in twelve groups: Adjunctives (chiropractic, acupuncture, etc.); Psychological tools (Biofeedback, mindfulness, etc.); Opioid replacements and analgesics (Lidocaine and ketamine infusions); Anti-inflammatories and NSAIDs (Aspirin, Ibuprofen, Ketorolac, Diclofenac, etc.); Neuroleptics (Gabapentin, Depakote, etc.); SSRIs (Cymbalta, Lyrica, etc.); Steroids (Oral, injections); Nonsteroidal anti-inflammatories (Meloxicam, etc.); Opioids (all forms); Surgeries (includes amputations, back surgeries, breast reductions); Interventional procedures (ESIs, pumps, stimulators, ablation); and Discontinuance (which includes forced taper and suicide).  There is a pattern to these interventions beginning from least invasive to most invasive, with opioids serving as the final option – alone or in combination with one or more of these tools.  Importantly, many of these respondents recognize their risk for suicide, and some have accepted that this will be their final and perhaps an inevitable choice where continuing systems of care fail to deliver accessible and necessary care supports. Said one, “I have really never received the care that I have needed because I have to pay cash for my visits because my insurance has a huge deductible, and a pain specialist is very expensive – especially going once a month. I have been living with this chronic pain for about 20 years and it just keeps getting worse! And I had tried several over the counter medicines for pain and they do nothing for my pain.” Abandonment of ineffective care routines is a topic that receives little attention.

The psychological burden imposed by managing complex illnesses under any circumstances is pronounced.  The added burden of stigma and marginalization by the health system that is supposed to support one through chronic illness management is clearly taking a toll upon respondents to this survey.  Add to this the fight to maintain personal and positive identity within a system that has reframed your needs as Opioid use disorder (found in DSM-5 under substance abuse disorders) – under any circumstances a descriptive that deflects the focus of care away from management of chronic, complex, progressive illnesses and toward prevention of addiction without regard for disease management. Are these compatible?  It appears that conformance and adherence has become a matter of acquiescing to stigma and marginalization – an understandable mine field of psychosocial stress.  The monthly urine drug screen has become an emblem of stigmata – a mark that reinforces being treated less than, a threat to withholding fragile supports ‘such as they are.’

Across respondents, irrespective of education, gender, experience, this marginalization is largely uninvited, unwelcome, barely tolerated, and associated with suboptimal care in many cases.  Expressed frustration is reflected across all responses and geographic locations (see map). There is no protection for patients from a system that removes their voice from decisions about managing the burden of illness on behalf of themselves or others.  Adherence and conformance are well reasoned actions after the exercise of autonomous choices. Without choices, they are simply handcuffs that chain patients to interventions that drain their limited resources.  Under these circumstances, suffering is magnified and dignity is stripped away. Said many when asked about factors that affect their choices for care, “I am not an addict, I am not addicted, I am sick, and I just want to be treated like a human being.”

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