Clampdown on opioids is hurting pain patients

Clampdown on opioids is hurting pain patients

In the summer of 1994, I was working at my desk at the Department of Justice when my back started to burn. Moments later, my body seized up and I fell to the floor. Suddenly, at the age of 30, I was no longer able to sit or stand. I could barely walk short distances. These limitations, related to a surgical mishap, would continue for almost 20 years.

After dozens of failed treatments, I reluctantly tried prescription opioids. The pain medication enabled me to work despite my condition. I argued cases in federal court from a foldable reclining chair, negotiated settlements by video teleconference and, working remotely, managed litigation in U.S. attorney’s offices across the country.

When medical advancements led to an improvement of my health, I went off opioids without incident.

I was, as it turns out, incredibly lucky. A report released last month by Human Rights Watch paints a cautionary and at times harrowing picture of what pain patients are experiencing today.

Because of well-intended efforts to address the overdose crisis, many doctors are severely limiting opioid prescriptions. Patients who rely on opioid analgesics are being forcibly weaned off the medication or seeing their prescriptions significantly reduced. Other patients are unable to find doctors willing to treat them at all.

One such patient, Maria Higginbotham, has had more than a dozen surgeries to correct the collapse of her spine. She suffers from a painful condition in which the spinal cord fuses with adjacent membranes. Last year, her physician cut her pain medication by 75 percent, explaining that the reduction was to comply with federal guidelines.

In the past, Higginbotham could function. Now she needs assistance just to get out of bed and go to the bathroom.

The federal guidelines Higginbotham’s doctor cited were issued in 2016 by the U.S. Centers for Disease Control and Prevention. They were intended as nonmandatory recommendations for primary care physicians.

Increasingly, the guidelines are treated not as recommendations but as one-size-fits-all mandates. They are being misapplied by physicians, state legislatures, insurers and Medicaid programs.

Some physicians told Human Rights Watch researchers that they had taken patients off opioids, or reduced patients’ prescriptions, against their better clinical judgment.

“You set yourself up for a liability, even when you know they’re not addicted and they’re benefiting from opioids,” one physician said.

Other doctors said they had stopped treating pain patients altogether — even patients who don’t use prescription opioids.

It’s true that opioids were prescribed liberally in recent decades. Doctors began doing this in the 1990s. There were some bad actors, such as “pill mills” and wayward pharmacies. Opioid medication too often fell into the wrong hands.

Moreover, opioids are not the magic bullet we once believed them to be. The evidence about their efficacy across a broad population is limited. Even when their use is appropriate, opioids carry risks, and the risks increase at higher doses. The CDC was right to encourage judicious, responsible prescribing. But chronic pain is a large umbrella category, encompassing a wide range of injuries and diseases, some of which are incurable. A one-size-fits-all approach to treatment does not work.

The recent clampdown has had harmful consequences. Some patients told researchers that they were forced to quit working or go on disability when their medication was denied. Others are now homebound. Many mentioned the possibility of suicide.

Patients also said that they were turning to alcohol or illegal substances to treat their pain.

What began as an effort to protect patients may be morphing into one that is harming them. The CDC’s National Center for Health Statistics estimates that 50 million Americans have pain every day and nearly 20 million have pain that limits major life activities. If the experiences that patients described to Human Rights Watch are common, the harm to patients could be widespread.

The CDC’s own data show that fatal overdoses are driven largely by illegally produced fentanyl, its analogs and heroin, not by medically prescribed opioids.

For all these reasons, the CDC should address the misapplication of its guidelines, as the American Medical Association recently did. The agency needs to revise its guidelines to recommend that physicians not abandon pain patients or engage in “forced tapering.”

The CDC should also study and address any unintended consequences of its 2016 guidelines, as it promised to do.

Tackling the overdose crisis is a vital public policy goal. But chronic pain patients should not become casualties in that fight. Kate M. Nicholson is a civil rights and health policy attorney. She served for 20 years in the Justice Department’s civil rights division, where she drafted current regulations under the Americans with Disabilities Act. She gave a TEDx talk about chronic pain, “What We Lose When We Undertreat Pain.”

What began as an effort to protect patients may be morphing into one that is harming them.


6 Responses

  1. My sentiments are with you and after this last surgery the gloves are coming off, I too contacted ACLU and attorneys, no one is interested because simply put, no one has died from being denied pain medication. What they don’t realize is that death is caused by a stroke, hypertension or some other compromised system, untreated pain is the underlying trigger as it raises stress levels. I have literally watched patients have heart attacks and strokes while under anesthesia, sometimes being asleep under an anesthetic is not enough to prevent these events. The only way this changes is by citizens standing up, drawing attention to the problems and misinformation then educating the public to raise the level of debate.

    My blog will came on line today Jan 31, 2019 at, I look forward to your support as I tackle related issues from an anesthesia providers perspective.

  2. While trying to stand up my own blog on this issue, 3 weeks ago I fell, breaking my upper arm in two places and surgery for one of those breaks. As a chronic pain patient my daily morphine milligram milequivilent dose was 75 MME pwr day. For my size doctors should have prescribed 165 MME per day to accommodate my pre-existing Tolerance and manage my acute pain post-op. But I was capped at 120 MME to comply with Ohio guidelines. Guidelines mind you not the law or any other restriction. For 17 days I was crazy with pain with levels at 8 or 9 even though I was getting the allowed 120 MME each day. One doctor told me that if my pain level was a 7 then my pain was well controlled on the amount of medication I was getting, problem was I got to a 7 for only an hour after I was medicated. I have calls into attorneys now to investigate what if anything can be done with providers who knowingly let you suffer to protect themselves from a fear which as yet, has not happened nor is it likely to, that of a physician having their license sanctioned for prescribing over 120 MME in an acute pain setting with patient who has a known Tolerance. If there’s no legal remedy to what happened I will be nanimg names once my blog is up and running.

    • I’m so sorry, this is happening all over the nation. It seems as if the only people who realize what is happening are chronic pain patients.
      This insanity will spread to every state. People who say that they are getting their pain medication for chronic pain will soon learn. It’s happening all over. We must stand up, let others know the horror of a surgery without pain medication. Cleveland Clinic is advertising non opiod knee or hip replacement as well as mastectomies. I just read an article from 2012 which states, those over 60 who receive a hip or knee replacement are much more likely to die of a heart attack in the first two to 6 weeks.. Why then would CC decide not to prescribe pain medications? Instead they give a numbing shot that lasts 3 days, I guess similar to a shot your dentist would give? Those make my heart race. Hmmm

      We’ve tried to get help from ACLU, not interested, AARP, nope. We’ve written to Congress major new stations. It’s almost as if there is a black out regarding the treatment of pain, any pain.

      I recently saw a young child suffering from cancer pain. No words were needed I could see the pain in her face, why couldn’t her doctors help her? She was dying in agony and they were worried about addiction?

  3. With the government and mainstream media drilling the phrase “Opioid Crisis” into the everyday American’s head on a seemingly near constant basis I feel it lumps prescription opioids and heroin and fentanyl in the same category. My point being, that when someone says they have an opioid addiction this mass hysteria instantly brings to mind a pill addiction although they may have a heroin addiction. Let’s separate it and call the addiction for what it is….

    • Agree Ms.Robinson,,,,u know I remember back ,for 14 years,,since the conception of actually treating physical pain.,it was a ,”given” that if u ad a medical reason for your physical ,thee intelligent doctors recognized that addiction should NEVER EVER apply.WTH happen to that truthful recognitions??What happen to those intelligent humane doctors??U know ,the ones who discover’d the gate theories of physical pain..The ones who recognized that your medicine needs to stay at a certain level to be effective.What happen to all those doctors?? maryw

    • You are so right! They are conflating Illicit Fentanyl with prescribed medications. People are dying from Illicit Fentanyl manufactured in China (not illegal there) disguising it as Vicodin, Oxycontin, Valium etc. It’s killing people. The CDC recently stated 70% of the over doses were due to Fentanyl, why didn’t they say illicit fentanyl? It’s not pharmaceutical. Knowing how badly the CDC bungled the numbers of deaths from prescriptions I assume that 70% is a low estimate.

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