The opioid epidemic has been with us for decades. It has resulted in untold misery and death. The pandemic only made matters worse. Overdose deaths spiked, in part because the synthetic opioid fentanyl flooded the market. I would be the first to acknowledge that drug abuse is a scourge that devastates many communities. But there is another tragedy unfolding around the country. People in severe, chronic pain are dying because of a lack of opioids!
The CDC has finally recognized that it may have gone too far in its restrictive opioid rules. It has issued a new “Clinical Practice Guideline for Prescribing Opioids for Pain” (Nov. 4, 2022). This reversal may come too late for some.
A Reader Shares What Happens Because of a Lack of Opioids:
Q. As a retired RN, I have administered pain medications safely for over 30 years. Now I have Parkinson’s disease, causing horrific muscle spasms. I cannot sit or stand when these attacks occur but must lie down!
For five years, I have been taking hydromorphone (Dilaudid) as a last resort when all other attempts to ease my pain failed. I never took more than prescribed and I never asked for early refills.
My doctor encouraged me to take the pain med at first, then last year he began to say I needed to get off the opioid. Apparently, prescribing this drug could get a doctor in trouble.
What is going on here? I always believed that when I got old and sick, at least I would not have to die in pain.
I cannot live like this. Because of my incurable brain disease, I spend most of the day in bed. Now I am ready to take my own life. Please help!
A. We are so sorry to learn of your tragic story, but there is hope for the future. In 2016, the CDC issued a guideline for “prescribing opioids for chronic pain.” The agency urged doctors to cut back on prescriptions for narcotics such as hydrocodone, oxycodone or hydromorphone.
Public health authorities were concerned about the epidemic of opioid overdose deaths. We have received thousands of heartbreaking accounts much like yours from chronic pain patients whose access to medication for relief has been limited.
Now the CDC is revising these guidelines.
First, they report that one in five adult Americans has chronic pain, and that may be an undercount. Pain has a devastating effect on quality of life and can contribute to suicide.
Here is what the CDC is now admitting:
“Patients with chronic pain also are at increased risk for suicidal ideation and behaviors. Data from death investigations in 18 states during 2003–2014 indicate that approximately 9% of suicide decedents had evidence of having chronic pain at the time of death; however, this is likely an underestimate because of the limitations of the underlying data sources used in the study. These factors and potentially harmful outcomes associated with chronic pain for some persons add to the clinical complexity and underscore the importance of adequately treating and providing care to persons with pain.”
Second, the CDC acknowledges that implementation of its prior guidelines might have led to patient harm. The 2022 recommendations are designed to provide “compassionate, safe, and effective pain care” for people like you.
Too Many People Have Died!
There is no question that far too many people have died from opioids during the last few years. Unfortunately, however, the crackdown on prescription medications like hydrocodone and oxycodone has had an unanticipated outcome.
Many people in severe pain have been cut off from access to relief. That has often led to horrible withdrawal symptoms on top of a return of severe pain. Here is how the CDC explains the problem today:
“Of particular concern, some policies purportedly drawn from the 2016 CDC Opioid Prescribing Guideline have been notably inconsistent with it and have gone well beyond its clinical recommendations. Such misapplication includes extension to patient populations not covered in the 2016 CDC Opioid Prescribing Guideline (e.g., cancer and palliative care patients), rapid opioid tapers and abrupt discontinuation without collaboration with patients, rigid application of opioid dosage thresholds, application of the guideline’s recommendations for opioid use for pain to medications for opioid use disorder treatment (previously referred to as medication assisted treatment), duration limits by insurers and pharmacies, and patient dismissal and abandonment. These actions are not consistent with the 2016 CDC Opioid Prescribing Guideline and have contributed to patient harm, including untreated and undertreated pain, serious withdrawal symptoms, worsening pain outcomes, psychological distress, overdose, and suicidal ideation and behavior.”
At last! We have been writing about this problem for years and finally the CDC sort of admits that there have been “misapplication” problems. In other words, the CDC is not really at fault. It’s the insurance companies, the pharmacies and the doctors who have abandoned pain patients.
The lack of opioids has some chronic pain patients turning to street drugs to ease their pain. Others may consider suicide as the only way out of excruciating agony.
Opioid Prescribing Has Changed:
For many years, the best-selling drug in America was hydrocodone with acetaminophen (APAP). A decade ago, more than 120 million prescriptions of this combination pain reliever were dispensed in the US. At last count that number had fallen to just over 40 million.
Some physicians were doubtless too promiscuous in their prescribing of opioids. But many doctors were sincerely trying to ease the suffering of people who had no other way to overcome severe and/or chronic pain. The DEA reclassification of hydrocodone from a Schedule III to a Schedule II drug made it much harder for doctors to prescribe this opioid to patients.
You can read about consequences of this policy at this link:
Patients in Pain Are Outraged about New Hydrocodone Rules
Lack of Opioids Led to Suicide:
When the CDC, the FDA and the DEA made it much harder for chronic pain patients to get access to opioids, tragedies unfolded. We received a heart-wrenching story from a widow whose husband, Tom Bellinger, committed suicide June 1, 2020, several months after writing this account of his suffering. It was titled:
“The Other Side of the Opioid Hysteria – Treating Chronic Pain”
“I have several purposes for writing. First is to identify the three types of pain: acute, ordinary, and chronic. Second is to, reluctantly, share some personal experience with chronic pain. Third is to present some hard numbers that show a causal relationship between chronic pain and suicide.
Pain:
Everyone knows pain (excepting a small group of people with the condition called Congenital Insensitivity to Pain). The quest to ease pain was probably the main pursuit of the earliest healers.
Acute Pain:
“Acute pain is extreme pain that a sufferer experiences for a relatively short period; like after a tooth is pulled or the result of a bad injury. Acute pain is treated with strong pain medicine, until the pain goes away.
Ordinary pain:
“Ordinary pain is on-and-off pain, such as a headache or an occasional backache. You might grab an aspirin or other over the counter (OTC) pain reliever for this.
Chronic Pain:
“Chronic (constant) pain is pain that doesn’t go away (imagine living with that occasional backache that lingers forever). Its level can be mild, medium or intense. Daily, it can fluctuate between these levels. For some, OTC pain relievers can help reduce chronic pain. For many chronic pain sufferers, especially those who have had the condition for a long, long time, the reduction can only come from strong prescription opioids.
Oxycodone:
“Oxycodone. It’s not a miracle drug but, for many of us chronic pain sufferers it can provide a few hours of reduced pain in a day filled with it. Plus, in this time of runaway prescription prices, it is relatively inexpensive.
“Yes, I know that the drug can be abused by grinding up the pills, dissolving them, and then injecting with a needle to get high. I also know that that can be a way to overdose and die. Most overdose deaths can be attributed to the shooting-up of street drugs that are laced with who-knows-what. This has often times occurred when an illegal version of the opioid fentanyl (said to be strong enough to knock out an elephant) is in the mix.
“I truly feel sorry for those who resort to such things. But what has any of that to do with the legitimate chronic pain sufferer? Nothing.
“After suffering in silence I am finally speaking out for myself and for the hundreds of thousands of human beings in this country for whom untreated chronic pain is an unrelenting reality.
Fed Up with a Lack of Opioids:
“I am Angry and Fed Up with the opioid hysteria status quo. It’s not really my thing to bare myself, my soul to strangers or even my family but it’s past time to expose the travesty of the war on opioids. I am 70 years old. I’m not planning on living forever but, would like to live my allotted time as best I can. An oxycodone prescription would make this possible.
“I used to be a carpenter. I injured my back over 40 years ago while lifting, with a partner, a very heavy table saw. In an instant, I felt excruciating pain in my lower back and was unable to stand up straight. I was bent over and listing to one side. It took a couple painful weeks of bed rest to straighten out.
“Over months and years my back continued to go out periodically. I would again be in the same shape and pain as the previous time it happened. I eventually quit being a carpenter, but the damage was done. My lower back condition degenerated to the point that the pain became chronic. It’s been my constant companion, 24-7, 52 weeks a year ever since. Sleep is as elusive as a mirage.
Trying Other Approaches:
“I’ve tried everything that’s been recommended: from biofeedback and acupuncture to physical therapy and yoga and everything in between. None of these approaches have been effective.
“For some time, OTC pain medicine dampened the pain. Eventually, none of them even touched the pain. I was prescribed the opioid hydrocodone; it helped for a couple of years. Finally, I was prescribed what I really required: oxycodone. At last, I found the one medicine that allowed me to have a somewhat livable life. I could do some things around the house that needed to be done and even some things I liked to do: a bit of woodworking or leather work, maybe cook dinner two or three times a week or bake some bread.
Opioid Hysteria?
“Then the opioid hysteria exploded. Doctors were cowed by the government into refusing to write opioid prescriptions. The heat became too much and the health care providers acquiesced completely. Many quit prescribing the oxycodone altogether.
“Within the last year and a half, I have been denied my request for oxycodone from a nurse practitioner, a pain specialist, and three different physicians who work for a major state-wide health provider.
“Anybody with ordinary pain can go to a grocery store or pharmacy and find relief. Yet, a person suffering chronic pain just has to suffer.
Lack of Opioids and Suicide:
“My chronic pain has caused depression and made me fairly indifferent to living. There have been long stretches of hours and days when I have contemplated various suicide scenarios.
“According to a study by the Center for Disease Control (Annals of Internal Medicine, Oct. 2, 2018), there is a connection between chronic pain and suicide. From 2003 to 2014, CDC researchers identified a total of 123,181 individuals, from eighteen states, who died by suicide. 10,789 were chronic pain sufferers. 51.7 percent of the chronic pain suicides had a known mental health condition; depression being the most common diagnosis.
“Lead researcher, Emiko Petrosky,MD, MPH, of the CDC stated: ‘We cannot draw definitive conclusions regarding the proportion of suicides directly attributable to chronic pain, [but] our narrative review of suicide notes suggests that the proportion was not trivial.’
My Take Home Message:
“The media, the government, and especially, the doctors – after all, they are the prescription writers – need to address this abdication of compassionate care.”
Tom’s Suicide:
Tom wrote that poignant article in December, 2019. His widow told us that he ended his life on June 1, 2020.
In a recent email, she said that this anniversary of his death has been challenging:
“Thank you for addressing this issue. As a loving spouse, I lived with it too.”
She shared this about Tom:
“Tom was a friendly, outgoing, good-looking person who maintained his weight and NEVER went anywhere in public unless he felt he could cope. As a result, no one except me, our daughter and a couple of close friends with similar conditions really knew what hell he was going through.”
So Many Others!
There are millions of people like Tom. Some are your family members. Others are friends, co-workers or neighbors. You may never know how much they are suffering based on outward appearances. We have heard from many of them. The pendulum has swung too far.
More Evidence That a Lack of Opioids Is Leading to Suicide:
An intriguing “News and Analysis” article in JAMA (April 29, 2019) was titled
“Limits on Opioid Prescribing Leave Patients With Chronic Pain Vulnerable”
The author, Rita Rubin, describes a doctor who has been swimming against the tide of opioid emotion. Thomas Kline, MD, PhD, treats “pain refugees.”
These are chronic pain patients who have been cut off from opioids.
“Kline accepts these patients that no one wants because he’s trying to keep them off another list, one he has helped compile: a list of US residents believed to have committed suicide because their physicians would no longer prescribe adequate doses of opioids to treat their chronic pain.
“As of late April, the list was 40 people long, but it is not inclusive, Kline said. ‘The problem is a lot of families don’t want this public. I have to respect that.’”
More People Like Tom:
We have heard from hundreds of patients suffering from chronic, intractable pain. Most never abused opioids. They took their prescribed medication exactly as directed, never increasing the dose. They are now suffering the consequences of a lack of opioids. That means withdrawal symptoms and excruciating pain. Here are just a few stories from readers.
Bill is himself a health professional:
“If anyone decides to write their Congressman, please check your spelling and grammar so you don’t come across as someone whose brain is foggy from too much pain medication.
“Maybe my own brain is fried from two Vicodin plus 4 Ultram a day, but I don’t think so. I have been on it for 10 years. I’ve never taken more than that and never used more than one doc. Still, CVS, Walgreens and Walmart are refusing to fill my prescriptions unless the doctor agrees to taper. My doctor bent over backwards with multiple calls to clarify my diagnosis, alternative treatment plan and other medications and modalities tried. It doesn’t matter. I can’t get any more Vicodin. No one cares if we jump from a bridge. If we go to street drugs, that is further justification that prescribed medication leads to criminal behavior. If we are on disability, we are a liability. We are not contributing through taxes.
“Use your pain and channel it to fight if you can. Make your voice heard somehow. Take responsibility. I too must learn to live without anything for my severe pain. I am not sure how I will continue to be productive consistently without medication.
“As a health care provider, I can tell you that nobody is going to buy that someone has 10/10 pain but can still sit at a computer and type. I have worked in ERs and Orthopedic floors and not one of those 10/10 patients in 25 years were interested in their computer or their phone. If this makes people angry, then good. To everyone struggling with this issue, including myself, breathe and learn to live with it, for this is the lot we have been given. No one cares if I commit suicide and the government won’t care about you, either.”
Nick is a veteran who has suffered severe pain for ten years:
“I am a 100 percent disabled veteran and have been a pain patient for 10 years. The VA cut my oxycodone dose from 120 mg a day to 60 mg cold turkey. I found a civilian pain management clinic and was doing OK until the CDC/DEA came out with their bogus long-term (6 weeks) study by anti-opiate doctors.
“Suicides among pain patients are up 38%. Two friends, both vets, took their own lives after their pain meds were cut off. I was desperate to find something to hold me over until my next prescription. Kratom in capsules worked for me, though it is certainly not for everyone.. It is not a miracle, but it does take the edge off withdrawal symptoms, restless leg syndrome, etc. You must stay hydrated, eat plenty and rest. Kratom saved my life a few times when I wanted to check out. I hope the new rules will let doctors put us back on our original doses.”
Jaylene is incensed by her experience:
“The war on drugs doesn’t do anything but come between doctors and patients. My doctor says I have legitimate reasons for pain medication and he wishes he could give me what I need. But instead, he is forced to cut patients off their medicines. I’ve gone from 60 pills a month to 50 which means I can no longer can have two a day. When I told my doc how much this affects me, he said he would not cut my prescription any further, but he added, ‘Life is pain and you cannot take a pill every time you feel it!’ He said I just need to learn to deal with it! I couldn’t believe he said this knowing how much legitimately documented pain I’m in.
“Until recently, I was getting Xanax for severe panic disorder and anxiety. I’ve been so upset because yesterday my doctor informed me that no longer is a patient allowed to be prescribed both opioids AND benzos. He told me I have to make a choice: one OR the other, not both.
“The sister of a friend of mine committed suicide four months ago. It was because of a lack of opioids. She could no longer get her meds because of these new rules.”
Where Do We Go From Here?
Everyone understands that far too many people are dying of opioid overdoses. What seems to have been lost in translation is that many of those deaths have been caused by fentanyl, carfentanil and other potent synthetic opioids made in China or Mexico. They are smuggled into the U.S. using the United States Postal Service and other shipping strategies. A small amount can kill hundreds or even thousands of people. So far, US law enforcement hasn’t figured out how to stop the flow of these killers.
The CDC has now changed course. It is no longer asking doctors to clamp down on opioid prescribing as a way to control the epidemic of opioid overdose deaths. It beginning to recognize that the old strategy did not stop overdose deaths from drug abuse.
In many cases, patients in pain were abruptly cut off from their pain medicines. Not only did they suffer from the pain, they experienced withdrawal symptoms from lack of opioids.
Seemingly, the CDC now recognizes that people in severe pain are not the cause of the opioid epidemic. Cutting them off from their pain medicine did not solve the crisis, though it probably created its own epidemic of suicides. People in severe chronic pain should not have to suffer from a lack of opioids.
Getting the DEA and the FDA to embrace the CDC’s change of heart will likely take time. It will be even more challenging to get physicians, pharmacists and nurses to realize that opioid hysteria harmed an awful lot of people. If your health professional or insurance company is unaware of the new “CDC Clinical Practice Guideline for Prescribing Opioids for Pain — United States, 2022,” here is a link. It’s not perfect, but it does acknowledge that chronic pain patients deserve:
“compassionate, safe, and effective pain care”
Please share your own story and/or thoughts in the comment section below.