The other side of the opioid epidemic — we’re people in severe pain

When I went into the office one Saturday afternoon in August 1994, I planned to spend a few hours finishing a brief that was due in federal court Monday morning.

At the time, I was an attorney for the justice department.  After 30 minutes of working at my desk, my back started to burn; it felt as if acid were eating my spine. In rapid succession, my muscles seized and threw me from my chair. I landed on the floor, stunned, as my body seared with pain.

{mosads}What I didn’t know then was that the pain would persist, and that I would be unable to sit, stand, or walk unassisted for almost twenty years. Nor could I have imagined that I would take opioids.

Opioids fill the news with a steady stream of stories of lives lost from overdose and abuse. What we rarely hear is the other side — opioids are also the most powerful pain medication we have. For me, they were life-restoring.

Appropriate pain management that included prescription opioids lifted me from the desperate circumstances of being bedridden and unable to sleep for months at a time to someone who negotiated major settlement agreements. I argued important cases in federal court, and supervised thousands of matters in U.S. Attorney’s Offices across the country. 

I still could not sit or stand — I negotiated via video-teleconference, argued from a reclining lawn chair, and managed cases from a jerry-rigged, platform bed — but I could and did work and function.

Pain patients today are not so fortunate.  In our effort to thwart the genuine problem of drug overdoses, we are taking life-sustaining medicine away from suffering people.

Long-term, legitimate pain patients who have relied on opioid analgesics can no longer fill their prescriptions in the many states that set maximum dosage and supply limits, often of three to seven days.

Even in states that contain exceptions for long-term pain care, insurance companies and pharmacy policies use such laws as a reason to deny coverage or fills. Pain patients are being denied treatment and involuntarily tapered off of opioid medications, even if they’ve never shown any risks of abuse.

The Department of Veterans Affairs, which sponsored one of the first systematic efforts to discontinue opioid treatment, recently issued an abstract reporting that the results were not fewer overdose deaths but increased suicide mortality.

While there is no question that looser prescribing of opioids in the 1990s and early 2000s contributed to the overdose crisis, illegal fentanyl and heroin drive overdoses today, not new prescriptions.  

The prescribing of opioids has dropped every year since 2012 and is at 10 year low — and yet drug overdose deaths have skyrocketed. Meanwhile, our public policy looks backward in time, intruding on the doctor patient relationship and burdening patient care.

The Attorney General recently responded to the concerns of pain patients by telling them to “take a few Bufferin or something and go to bed.”  

His comment shows an astonishing misunderstanding of a condition whose quality of life index (QLI) is akin to that of late-stage cancer. Fifty million Americans suffer from severe or persistent pain, which twenty-five times more than those who misuse opioids.

Chronic pain is also the primary cause of disability in the US, and it costs the economy half a trillion dollars every year.

There is an important but often glossed over distinction between using medication for a health condition in a way that restores function, enabling work and participation in family life, and misusing a substance in a manner that destroys function.

Most people who take opioids for pain do not abuse them: studies show risk for addiction in such patients varying between .07 and 8 percent. And, when opioids are prescribed properly with screening and follow through care, the risk of addiction goes down significantly.

The substantial majority of people who have misused prescription opioids never received them in a healthcare setting; they obtained them from medicine cabinets, family and friends, or bought on the street.

Like many pain patients, I initially resisted taking opioids. I exhausted every other possible treatment first.

Because my condition resulted from a surgery when a doctor severed nerve plexuses in my spine, I tried infusions, nerve blocks and even a repeat surgery. I did physical therapy, acupuncture, and biofeedback. But nothing abated the pain.  

Treatment with opioids and integrative care allowed me to maintain a job, a sense of purpose, and community until I found my way to healing.  Mine is a story rarely told of someone who took opioid analgesics for years and went off them without incident when the pain remitted.  Given the environment today, such stories may well become extinct.

Kate Nicholson is a civil rights attorney, a nationally-recognized expert in the Americans with Disabilities Act, and a chronic pain survivor. She is writing a book about pain, and recently gave a TEDx talk on the subject.