“The nine most terrifying words in the English language are: I’m from the Government, and I’m here to help. “President Ronald Reagan

It’s an oft cited quote. Some might say overused. But these words have proven to be eerily prophetic when it comes to how the governments, state and federal, have dealt with the opioid crisis. And as with most crises, there are victims. The victims can be defined as those left in the wake of all who have died from overdoses. Those who have lost loved ones or are living with someone who has become addicted. The many press reports recount the typical outcomes of an illicit drug epidemic. The numbers of deaths are staggering. The streets of once great cities are littered with hypodermic needles, and homeless encampments are rife with illicit drug dealers and addicts who use the deadly poison that they peddle. But also, the chronic pain patient who has followed all the rules, been treated by licensed medical doctors, has submitted to ever growing demands for urine, for pill counts, for actual compliance contracts and been subjected to stigma. The patients who have been totally compliant yet cut off forcibly from the only medications that have enabled them to live a quasi-normal life. These are the victims not well represented in the media. So, a group of chronic pain patients, who have gathered in closed Facebook groups for several years, decided to bring awareness to these untold stories, and the march towards the CDC in Atlanta was launched.

Last week, a group of chronic pain patients, began their trek towards Atlanta, Georgia. Folks from all walks of life, and all 50 States, unwitting allies, all headed towards the Center for Disease Control (CDC). Their mission: to raise awareness to the plight of the chronic pain patient in the wake of the fallout over the government’s handling of the opioid crisis. The location was chosen because it was the CDC who began their plummet from well controlled pain patient with an ability to perform activities of daily living, to victims of the opioid crisis, many left writhing in unfathomable pain. On Friday, they pushed their pain aside, and made their stand in the shadows of the CDC headquarters. A diverse crew, some in wheelchairs, or using walkers, or canes and others with no visible disability or injury holding signs and chanting “don’t punish pain” and “pain patients vote.” A rallying cry of desperation from a mostly forgotten group from varying socioeconomic roots but with the common history: all had been impacted by this war on opioids and the CDC’s own “guidelines for prescribing opioids for chronic pain.” To this group, the guidelines had effectively become law and the pain had become unbearable. Still, they were there to stand for those of us who couldn’t be there, either due to disability, distance, or because a growing number, unable to live with the pain, had committed suicide. They stood for all of us even though some could literally not stand.

It began seemingly benignly to the casual observer. In 2016, the CDC issued guidelines for prescribing opioids for Chronic Pain. In its entirety, the statement discusses numerous medical factors intended for the clinician under the guise of helping the physician decide how much, if any, opioid pain medication should be prescribed to his patient. Though the text of the guideline is lengthy, to the layperson who even noticed, it probably seemed innocent enough: “CDC developed and published the CDC Guideline for Prescribing Opioids For Chronic Pain to provide recommendations for the prescribing of opioid pain medication for patients 18 and older in primary care settings. Recommendations focus on the use of opioids in treating chronic pain (pain lasting longer than 3 months or past the time of normal tissue healing) outside of active cancer treatment, palliative care, and end-of-life care.” In essence, the CDC recommended that chronic pain patients not be given doses of opioids over 90 morphine medical equivalents and warned of doses above as low as 50 MMEs.   I was not the casual observer. I am both a political junkie and a chronic pain sufferer, and I knew immediately there would be trouble. The fallout and the harm has been swift and vast, and has only proven to increase in the three years since publication. The government overreach in the name of these guidelines began almost immediately.  And it continues to this day.

The punishment meted out for having a chronic pain condition requiring opioid medications under these circumstances has been overwhelmingly draconian.  Facebook groups, gathering places for the disenfranchised, have become virtual halls of knowledge for advocates and pain patients alike. Doctors, pharmacists, and other pain patient advocates as well as pain patients use them to organize.  One of our groups has nearly 10,000 members, and our membership grows daily. And the few of us with any experience on how to fight city hall, never mind the federal government, are also pain patients fighting our own battles. The challenges are many, but we’ve begun to garner attention and gain some traction.

I cannot say for sure when the press started to pick up on the fact that chronic pain patients were being forcibly tapered or cut altogether from their pain medications. Or that pharmacists were turning patients away, without valid reasoning and without their prescriptions.   I cannot cite any one event that precipitated the press but one situation jumps out. Dr. Barbara McAneny, the president of the American Medical Association and a practicing oncologist, wrote a prescription for an opioid pain medication for a  stage 4 prostate cancer patient. The pharmacist called the patient a drug seeker and refused to fill the prescription.  The patient went home and attempted suicide, out of shame. Thankfully, he was found, and saved. This is but one of many stories both documented in the press, and told on social media of legitimate patients, who were never meant to be impacted by this harmless guideline, being harmed.

The stories began to pile up.  Doctors forcibly tapering legitimate pain patients. The suicides. The pharmacists turning people away. Insurers refusing to “approve” opioid prescriptions.   In March of 2019, a group called Health Professionals for Patients in Pain wrote to the Centers for Disease Control and Prevention, urging the agency to respond to the “widespread misapplication” of its 2016 Guideline for Prescribing Opioids for Chronic Pain. Patients were being forced to taper off opioids and were subjected to unnecessary suffering, they said. The letter was signed by more than 300 health professionals, including three former US drug czars.    It was at about this time that I began to see some changes occur.   The CDC has issued clarifications to their guidelines and acknowledged that they’ve been misapplied. .  The AMA has issued proclamations.  The Department of Health and Human Services Pain Task Force recently published, in part, “the CDC Guideline has been misinterpreted and misapplied. Unfortunately, unintended consequences such as forced tapering and patient abandonment contribute to adverse patient outcomes and provider disincentives in treating patients with complex acute and chronic pain. “   and the FDA has acknowledged the problems with the misinterpretation of the CDC guidelines.   So now that virtually all the agencies dealing with health and medication have spoken, the pain patient crisis is over right?  Not even close. It’s accelerating. The pendulum on opioid prescriptions had swung too far with liberal prescribing at one point.  It’s now swung decisively in the other direction. It will be difficult to change this trend.

No one meant for such draconian measures to be taken.  All chronic pain is different.

This was only intended to be a guideline for primary care providers. There is no upper limit to opioid prescribing.  But the harm that those seemingly harmless guidelines has caused has been incalculable. State laws limiting the number of opioid pain medications have been passed citing the CDC guidelines.  Pain patients frequently and wrongly hear “it’s the law’ from physicians who are either misinformed or whose lawyers have advised them to cut prescriptions or cut pain patients, or both.  A few viral videos of cancer patients being turned away by pharmacists at chain pharmacies have surfaced.  I hear such stories literally every day.  Those who have sworn to first, do no harm, have in fact done much harm.  And, in many cases, they don’t like it either.  The power of a too big and powerful federal government is more than the physician can fight. They are not willing to lose their medical licenses in the current opioid hysterical climate.  Many have stopped prescribing opioids altogether.  Others have begun sending chronic pain patients to pain management specialists. More often than not, the pain management doctors go ahead and taper the patient down or off of opioids.

The cost in dollars is not insignificant, either. Virtually all pain patients have suffered a similar fate. Their prescriptions have been cut or cut off. Even if they were not on the higher than 90 MME per day dosage as cited in the original CDC guidelines, they’re being cut.  It’s come down from on high that opioid medications that are virtually the same as those which has been used to treat moderate to severe pain for centuries is persona non grata in America circa 2019. It’s become all too much for the average physician to deal with. It’s also more than the average chronic pain patient can deal with.  There is now a group that keeps count of the suicides due to intractable, untreated or undertreated pain. I personally know of three people who have committed suicide. And several of the Facebook group administrators, myself included, have been in the position of having to deal with a suicidal chronic pain patient. That we are ill equipped for this is an understatement.  Perhaps worst of all is this, it’s not working.  The numbers of opioid prescriptions has decreased, and overdoses have increased.  Predictably so for those in the trenches of advocacy, since this is an illicit heroin and fentanyl crisis.  And it’s not going to work; prohibition never does.  If it did, alcohol would not be killing more people than all opioid deaths combined.

So where do we go from here? Stay tuned…