Doctors Prosecuted for Opioid Prescribing Should Fight Back

(Editor’s note: In 2016, Dr. Mark Ibsen’s medical license was suspended by the Montana Board of Medical Examiners for his opioid prescribing practices. Two years later, the suspension was overturned by a judge who ruled that the board made numerous errors and deprived Ibsen of his legal right to due process.)

By Mark Ibsen, MD, Guest Columnist

The headlines are pretty typical: “60 Doctors Charged in Federal Opioid Sting.” The story that follows will include multiple damning allegations and innuendos, including a claim by prosecutors that they are “targeting the worst of the worst doctors.”

Sometimes there is a trial, but often the doctors plead guilty to lesser charges and give up their license rather than mount a lengthy and costly legal defense.

Why are doctors losing every case to their medical boards and DEA? Are there that many criminal doctors? If so, what happened to our profession?

I see a pattern emerging: A doctor sees patients and treats pain in the course of their practice. As other doctors give up prescribing opiates for fear of going to prison or losing their license, the ones left end up seeing more and more patients.

They soon become the leading prescribers of opioids in their state and become suspect just based on the volume of opioids they prescribe.

Given that law enforcement and medical board investigators usually don’t have training in statistics (or medicine), they are unable to see that the number of pain patients remains the same, but there are fewer practitioners willing to treat them.

“The Criminalization of Medicine: America’s War on Doctors” was published in 2007, but is even more relevant today.   

“Physicians have been tried and given longer prison sentences than convicted murderers; many have lost their practices, their licenses to practice medicine, their homes, their savings and everything they own,” wrote author Ronald Libby. “Some have even committed suicide rather than face the public humiliation of being treated as criminals.”

Libby wrote over a decade ago about doctors’ homes and offices being raided, DEA agents posing as pain patients to entrap them, and law enforcement task forces being created to target doctors for fraud, kickbacks and drug diversion.

Sound familiar?

I was reviewing a case about a nurse practitioner in Michigan who recently had her license suspended because she prescribed opioids “contrary to CDC guidelines” and “ranked among Michigan’s highest-volume prescribers of commonly abused and diverted controlled substances.”

This unsubstantiated crap put out by the Michigan Board of Nursing and its investigator is unethical and immoral. It should lead to a mistrial in court or dismissal at hearings. 

Fight Fire With Fire

This is an Amber alert for physicians. While pejorative headlines contaminate the discourse, the prescriber’s reputation bleeds away. The Montana Board of Medical Examiners did this in my case, and since I knew that the board was relentlessly after my license for “overprescribing” opioids, I gave up any hope of fairness.

My proposal: Lawyers representing doctors must counter the negative headlines with their own, and doctors should use whatever goodwill is left to rally their staff and patients, counteracting the pressure to testify against the doctor. 

I used what was left of my bully pulpit to save my own license and freedom. How? My assistant assembled my patients in large crowds at my hearings. I also made myself available to the media to counter the narrative put out by Mike Fanning, the board’s attorney, who went so far as to publicly question my sanity.

Fanning’s title was special assistant Attorney General, which told me the medical board works for DOJ in my state. I knew this for sure when DEA agents came to my office and tried to intimidate me.

“Doctor Ibsen, you are risking your license and your freedom by treating patients like these.”

Patients like what?

“Patients who might divert their medicine.”

Might? Isn’t that everyone? What would you have me do?

“We can’t tell you, we’re not doctors.”

My plea to doctors: Let’s reinvent our defense. The DEA and medical boards have a formula. It’s winning. 

We need a new response: Fight back and hold on. Just like with any bully, reveal their game and fight fire with fire.

Dr. Mark Ibsen continues to practice medicine in Montana, but focuses on medical marijuana as a treatment. He no longer prescribes opioids. Six of his former patients have died after losing access to Dr. Ibsen’s care, three by suicide.

Do you have a story you want to share on PNN? Send it to: editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Prescription Opioid Crisis Is Over

By Roger Chriss, PNN Columnist

In a very real sense, the prescription opioid crisis is over. But it didn’t end and we didn’t win. Instead, it has evolved into a broader drug overdose crisis. Opioids are still a factor, but so is almost every other class of drug, whether prescribed or sourced on the street.

The main players in the crisis now are illicit fentanyl, cocaine and methamphetamine. The vast majority of fatal overdoses include a mixture of these drugs, with alcohol and cannabis often present, and assigning any one as the sole cause of death is becoming tricky.

Connecticut Magazine recently reported on rising fentanyl overdoses in that state. According to the Office of the Chief Medical Examiner, fentanyl deaths in Connecticut spiked from 14 in 2012 to 760 in 2018. Fentanyl was involved in 75% of all overdoses last year, often in combination with other drugs

Meanwhile, overdoses involving the most widely prescribed opioid — oxycodone — fell to just 62 deaths, the lowest in years. Only about 6% of the overdoses in Connecticut were linked to oxycodone.

Similar trends can be seen nationwide, mostly east of the Mississippi. Opioids still play a major role in drug deaths, with the CDC reporting that about 68% of 70,200 drug overdose deaths in 2017 involving an opioid. But more than half of these deaths involved fentanyl and other synthetic opioids obtained on the black market.

According to the National Institute on Drug Abuse, overdoses involving prescription opioids or heroin have plateaued, while overdoses involving methamphetamine, cocaine and benzodiazepines have risen sharply.

In other words, deaths attributable to prescription opioids alone are in decline. Deaths attributable to fentanyl are spiking, and deaths involving most other drug class are rising rapidly. The CDC estimates that there are now more overdoses involving cocaine than prescription opioids or heroin.

Moreover, the crisis is evolving fast. At the American College of Medical Toxicology’s 2019 annual meeting, featured speaker Keith Humphreys, PhD, remarked that “Fentanyl was invented in the sixties. To get to 10,000 deaths took 50 years. To get to 20,000 took 12 months.”

In fact, provisional estimates from the CDC for 2018 suggest we have reached 30,000 fentanyl deaths. And state-level data show few signs of improvements for 2019.

Worryingly, methamphetamine use is resurgent. And cocaine is “making a deadly return.”  Illicit drugs are also being mixed together in novel ways, with “fentanyl speedballs” – a mixture of fentanyl with cocaine or meth – being one example.

Drug Strategies ‘Need to Evolve’

The over-emphasis on prescription opioids in the overdose crisis has led to an under-appreciation of these broader drug trends. Researchers are seeing a need for this to change.

“The rise in deaths involving cocaine and psychostimulants and the continuing evolution of the drug landscape indicate a need for a rapid, multifaceted, and broad approach that includes more timely and comprehensive surveillance efforts to inform tailored and effective prevention and response strategies,” CDC researchers reported last week. “Because some stimulant deaths are also increasing without opioid co-involvement, prevention and response strategies need to evolve accordingly.”   

It is now common to hear about the “biopsychosocial” model for treating chronic pain – understanding the complex interaction between human biology, psychology and social factors. This same model has a lot to offer substance use and drug policy.

Substance use and addiction involve a complex interplay of genetic and epigenetic factors combined with social and cultural determinants. Treatment must be more than just saying no or interdicting suppliers. At present, medication-assisted therapy for opioid use disorder remains hard to access. And other forms of addiction have no known pharmacological treatment.

Addressing the drug overdose crisis will require not only more and better treatment but also increased efforts at harm reduction, decriminalization of drug use, improvements in healthcare, and better public health surveillance and epidemiological monitoring. Further, the underlying social and cultural factors that make American culture so vulnerable to addiction must be addressed.

None of this is going to be easy. Current efforts are misdirected, making America feel helpless and look hapless. Novel and possibly disruptive options may prove useful, from treating addiction with psychedelics to reducing risks of drug use through safe injection sites and clean needle exchanges.

We are long past the prescription opioid phase of the crisis, and are now in what is variously being called a “stimulant phase” and a “poly-drug phase.” Recognition of the shape of the drug overdose crisis is an essential first step toward changing its grim trajectory.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Is the DEA Overreaching Its Authority?

By Lynn Webster, MD, PNN Columnist 

The U.S. Department of Justice (DOJ) does not have the legal authority to determine which health care activities constitute a “legitimate medical purpose.” However, an increasing number of prescribers have been subjected to DOJ criminal investigations that operate under an expanded interpretation of federal law.

In 1970, Congress passed and President Nixon signed into law the Controlled Substances Act (CSA). In its broadest sense, the CSA regulates every aspect of controlled substances, from production to delivery, distribution, prescribing, possession and use. The CSA’s impact is far-reaching, touching many different sectors of our society, including healthcare, pharmaceuticals, law enforcement, politics, and state and federal judiciaries.

According to the CSA, a prescription for a controlled substance “must be issued for a legitimate medical purpose by an individual practitioner acting in the usual course of his professional practice.” This statutory language is at the root of the issue. But who decides what is a legitimate medical purpose?

The Drug Enforcement Administration (DEA) is the branch of the DOJ that is tasked with enforcing the controlled substances laws and regulations of the United States.

In the context of trying to address the opioid crisis, the DEA has taken a proactive approach in determining which medical practices have a legitimate medical purpose and which do not. This hands-on approach is in direct contravention with the CSA. 

The DEA is effectively preempting state law as it relates to the regulation of controlled substances. In Gonzales v. Oregon, the U.S. Supreme Court ruled in 2006 that the authority to determine a legitimate medical purpose rests with state governments.

This means it is state lawmakers, not federal officials, who should regulate the practice of medicine. Medical boards are established by the authority of each state to protect the health, safety and welfare of patients through proper licensing and regulation of physicians and other practitioners.

If a doctor engages in an obviously nefarious activity, such as selling or trading prescriptions for sex or money, then that doctor is not in any way prescribing for a legitimate or legal medical purpose under the CSA. Remedies for this conduct would be within the authority of the DOJ, as well as state regulators.

The key phrases -- "legitimate medical purpose" and "in the usual course of a professional practice" -- are not defined in the CSA. This omission, unfortunately, has invited conjecture about the meaning of the phrases in recent years. The only way the phrase "legitimate medical purpose" would have any legal meaning would be if the concept of an "illegitimate medical purpose" were defined by the CSA -- and it is not.

Moreover, the words "legitimate" and "medical" are redundant. The practice of medicine is inherently legitimate, according to the CSA. The phrase "legitimate medical purpose" can be reduced to "medical purpose" without changing its meaning.

Any practice that is medical is legitimate and should be deemed consistent with the CSA regulation. The CSA, in other words, precludes the possibility that doctors who prescribe high doses of opioids have behaved criminally based only on the level of doses they prescribe.

Standard of Care

The DOJ is now using deviation from the “standard of care” to determine whether or not practitioners have a legitimate medical purpose to prescribe opioids. A standard of care is generally considered the customary or usual practice of the average physician.

In an attempt to address the opioid problem, the DOJ has hired medical experts who claim that any deviation from standard of care amounts to practicing without a legitimate medical purpose. In some instances, the government's experts have even used the CDC opioid guideline’s dose recommendation as a test of whether or not the prescribing of opioids has a legitimate medical purpose.

Using deviations from "standard of care" as criteria for compliance with the CSA is in direct conflict with the Supreme Court ruling in Gonzalez v Oregon, which found that the Attorney General “is not authorized to make a rule declaring illegitimate a medical standard for care and treatment of patients that is specifically authorized under state law.”

Even substandard treatment by providers is not necessarily criminal behavior and should rarely involve prosecution by the DOJ. This is supported by a 1983 statement in a DEA newsletter that declares acts of prescribing or dispensing controlled substances lawful when they are done within the course of a provider’s professional practice. Even if a physician's behavior reflects the grossest form of medical misconduct or negligence, it is nevertheless legal.

The information provided in the newsletter isn't an opinion. It's the law.

Unquestionably, prescribers should be held to a high standard of care at all times. However, it is the responsibility of state medical boards to hold them to that standard. It is not the DOJ's role to determine the quality or boundaries of the practice of medicine.

 Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and the author of “The Painful Truth.”

You can find Lynn on Twitter: @LynnRWebsterMD. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Shades of Grey

By Mia Maysack, PNN Columnist

A blonde walks into the mall, minding her own business, and sits down at a table in the food court.

A random dude calls out, "Don't you know it's rude to keep sunglasses on in here?"

That line felt like a punch to me.

"Well good sir, what can I say? My migraine lacks proper manners."

Yes, I wear sunglasses indoors because I'm cool like that. But it's also because after living with persistent and debilitating head pain for almost two decades, I need to wear sunglasses as a shield against the brutal assault of fluorescent lighting.

And sunglasses are one of the few ways I can make my seemingly non-existent illness visible to the rest of the world.  

There are specially designated migraine glasses that provide relief by strategically dimming light. Brightness levels on cell phones and other devices can also be turned down by a special app that filters blue light.   

Despite these helpful tools, walking under the bulbs in any public place feels as though light is raining down on me and, like a sponge, absorbing all of my energy.

That is why a trip to the grocery store could go well, but afterwards I'm out for the count and barely able to make it up the stairs.

Within the last couple years, my mobility has continued to be compromised -- especially when it comes to either sitting (driving) or shifting positions (sitting to standing). At a conference recently, after noticing my navigation or lack thereof, a dear colleague suggested what I had been silently dreading: the possibility of using a cane. There's nothing wrong with canes, I'm grateful for all medical devices, but suffice to say they aren’t exactly what I had pictured at the ripe old age of 29.  

I've become accustomed to losing a lot as a result of chronic pain and illness, but confronting a limited physical future is my newest anguish.

The combination of chronic cluster headaches, daily intractable migraines and now fibromyalgia not only heighten the pain scale number, it hinders even the simplest of daily tasks. It impacts the few things I am still able to do that bring me joy, such as participate in creative body movement through yoga or dance.

I smirk thinking back to the days I could go out and dance for hours on end. There's a certain spark that comes alive in me when bass throbs its way through a loudspeaker. I'm quite aware that is contradictory to head pain, yet somehow, I cannot live without it. My soul begins to vibrate in the most calming way as I am enticed by the rhythm and it takes over.

Fast forward to today and I'm fortunate to get a couple minutes of dancing in before symptoms worsen. I cannot go as hard or as long as I used to, but it has caused an evolution in my movement, leading me to a whole-body present moment acceptance.  

Last week at an appointment, I mentioned that a cane will likely be needed daily in the near future. Initially the provider skipped over the remark entirely, but when I brought the conversation back around to ensure we were on the same page, she reacted with “Oh yes, your question about a cane.” 

I don’t recall needing an answer so much as an acknowledgement, as I do not feel the need to ask for permission to do what’s going to be best for myself. 

It’s never too far from my mind that I walked away from bacterial meningitis. If it is now catching up to me, there’s never an ideal time for that to happen and I am fortunate to have had moments with an abundance of blessings. No matter how dark life can get, it’s imperative we make the absolute most of every breath and make a conscious commitment for the sake of ourselves to never give up. 

Whether we live inflicted with physical ailments or not, none of us know what the future holds, nor when our number may be up. All it takes is a slight change in circumstance to alter our lives forever, so we must take time to appreciate and find ways to enjoy the gifts we have. 

The blonde kept the shades on and walked out with her cane like the bad ass that she is!      

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why I’m Fed Up with the Healthcare System

By Nyesha Brooks, Guest Columnist

I'm so fed up with the healthcare system. I was diagnosed a year ago with a chronic invisible illness known as fibromyalgia. I also have depression and anxiety. I was relieved to finally have a name for what I was going through.

My journey with this illness has been pure hell. I live with chronic pain every day of my life. I had to resign from my employment of 8 years because I could not bear the pain any longer.

Suicide is a BIG concern when people have fibromyalgia. I had to reach out to the crisis hotline due to feeling like nobody understood. The pain is so unbearable, constant fatigue, numbness in your body parts, and crippling back pain at times. You also get brain fog that can cause memory loss and mood swings. It’s all isolating.

While there is no cure for fibromyalgia, doctors say it’s not fatal. But if you live your life in pain every day, it will cause all kinds of health problems that can lead to death.

My issue with the doctors today is they don't listen anymore and they stereotype everyone as opioid abusers. I’ve never done drugs or abused medications in my life. Even when I'm in severe pain, I still take only what is prescribed for me. It's almost like they want you to go home and suffer.

The problem with fibromyalgia is there's no detection or extensive research on it. There’s not a lot of information out there. To the naked eye I look fine and healthy. However, that’s not my reality. I have nerve damage. When I'm home I wear something very comfortable and I'm in bed most of my day. We are very sensitive to loud sounds and light. I listen to a lot of relaxing sounds on Youtube such as the rain falling.

NYESHA BROOKS

I have big help from my family that assist me throughout the day because I have limitations. I take all kinds of medications that I keep in a bag. The medication doesn't work at all. It just makes you very drowsy and increases the pain that you’re already in. Due to the opioid epidemic, we're restricted from getting the right medications.

I’ve been to the ER so many times because I get flare ups that can last all day or weeks. I'm on high blood pressure medicine due to being in severe pain. I'm telling you I don’t wish this on my worst enemy.

I have been fighting for my social security disability for a year now. I was rejected the first time and now I’m waiting on my appeal decision. It’s very upsetting because I'm a mother and I just want to take care my children.

Plan B is not even an option for me because I can't handle a day-to-day job. One task burns me out or takes me hours to do. My therapist says because I'm always stressing, I'm not going to be here to see my benefits. Today my doctor looked at me and suggested because of my age I should go back to the work world. I'm fed up. My doctor bases my reality on his research. How is research more accurate than my truth?

I met so many fibro warriors from a support group on Instagram and we all have similar stories with the healthcare system. I need help getting this awareness out because fibromyalgia matters and is real. The doctors need to take our illnesses seriously and listen. One rejection can cost a person their life. We need love, support and understanding.

Nyesha Brooks lives in South Philadelphia.

Do you have a story you want to share on PNN? Send it to: editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pain Platform: What Patients Should Look for in 2020 Candidates

By Crystal Lindell, PNN Columnist

I met my boyfriend, who also is a chronic pain patient, at a local county Democrat meeting a little over a year ago. We’re both crazy liberals, but he always says he knew it was love when I turned to him during the meeting and said, “If Donald Trump made hydrocodone over-the-counter, I’d vote for him in 2020.”

I have a political science bachelor’s degree and spent hours in my college classes lamenting about the surge of single-issue voters. Why would anyone vote for a presidential candidate just because they were pro-choice?

But now that I’m sick and depend on pain pills to function, I have to tell you, I kind of get it. If there were a candidate who supported my right to pain medication, I’d go work for their campaign.

Unfortunately though, there aren’t any candidates who really seem to represent the things pain patients need — not yet anyway. Both major parties have pushed for limits on opioid medication, regardless of whether your doctor thinks you need it. And both have ignored the pleas of pain patients for access to alternative treatments.

Here’s a list of 13 things that pain patients should be looking for in 2020 presidential candidates — a “Pain Platform” if you will. I’m not sure any candidate will truly live up to this ideal, but we won’t know until we ask.

1. Eliminate regulations for prescription opioids

This is the big one, obviously. And the most important. In a misguided attempt to respond to the opioid epidemic, there has been a surge in the number of regulations for opioid prescriptions that includes everything from limiting the amount a patient can get to arresting doctors who prescribe too much. That needs to stop.

2. Require insurers to fully cover alternative pain treatments

This one is also obvious. If they truly believe that opioids shouldn’t be the only pain treatment, then they need to support other treatments financially. And specifically the $0 co-pay is so important.

Insurance companies may think that a $30 co-pay for a physical therapy session isn’t that much, but if you need three sessions a week for three months suddenly you’re looking at more than $1,000. That’s too much. Especially for pain patients, who tend to have less income than the general population.

3. Provide research grants for new pain treatments

Even patients who use opioids know they aren’t a cure-all. But unfortunately, there aren’t many good alternatives for treating pain. That needs to change and requires research into new therapies that could help. If the government really wants people to use fewer opioids, they need to research alternatives that actually work.

4. Legalize recreational marijuana at the federal level

Personally, marijuana doesn’t help me much with pain. But for some people it’s exactly what they need, which is why it needs to be legalized. And yes, I think it needs to be legalized recreationally, because patients shouldn’t have to go a doctor and get a prescription to treat their pain.

5. Make kratom legal in all 50 states

I personally have found kratom to be extremely helpful for treating my chronic pain. In Illinois, I can get it over-the-counter, so I don’t have to drive over an hour each way to see a doctor every time I need a refill. Unfortunately, several states have made kratom illegal and some are considering it. That needs to change.

6. Forgive all medical debt

I have great insurance through a great job and I still have literally thousands of dollars in medical debt — all from co-pays. I can’t catch up because anytime I make any progress on it, I have another flare and rack up more bills. We live in the richest country in the world. Healthcare shouldn’t be what kills your credit.

7. Launch Medicare for all

I shouldn’t have to be over a certain age or legally disabled to get good health insurance. Everyone should have access to that. It’s not hard.

8. Make it easier to get disability while still working

The problem with disability is that you have to be out of work for a long period of time before you get your benefits. That’s impossible for anyone who’s responsible for their own bills. Yes, they give you back pay if you eventually qualify for disability, but landlords aren’t typically the type of people who will let you back pay them. You should be able to apply for disability while you’re still working so that you have steady income throughout.

9. Make disability pay a living wage

You’re barely allowed to make any income if you collect disability. But disability alone isn’t enough to live on in most places. People who depend on it shouldn’t also be relegated to poverty.

10. Allow people on disability to get married without penalty

This is a big one. As it stands right now, if you’re currently getting disability and Medicare you can lose those benefits if you get married because they count your spouse's income toward your income. Losing both kills your independence and can drastically increase your medical bills.

We should be encouraging love for people who are already dealing with so much, not discouraging it.

11. Require all government services for seniors to be provided to the disabled

This one is mind-blowing to me and I’m shocked that it’s not already the case. If you’re too sick to work, you are effectively retired no matter what your age. And you should have access to the same services seniors receive, such as transportation and other assistance. Some people lose their health early and basing benefits solely on age unfairly punishes those people.

12. Fund a public awareness program for invisible disabilities

I cannot read one more Facebook story about some poor person being screamed at for using a handicap spot because they “don’t look sick.” Lots of sick people look perfectly healthy. I look perfectly healthy, but I’m really sick. You can’t judge someone’s health by how they look. A public awareness campaign about invisible illness would go a long way toward making the lives of disabled people better.

13. Provide more medication-based addiction treatment centers

I know, I know. Patients aren’t addicts. But guess what, a lot of people who get addicted to opioids start with medications for legitimate pain. We shouldn’t abandon them. Providing more medication-based treatment centers is the first step toward helping them. There is a real need for those treatment centers in rural areas, which have been the hardest hit by the opioid crisis. The more addicts we help, the less we’ll have to deal with politicians blaming pain patients for the opioid crisis. 

What else would you add to the Pain Platform? What’s your wish list for 2020 candidates? Maybe if we all share our ideas, they’ll finally start listening to us. 

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. Crystal has hypermobile Ehlers-Danlos syndrome. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Is Fentanyl a Weapon of Mass Destruction?

By Lynn Webster, MD, PNN Columnist

Usually we think of bombs, missiles, rockets and dangerous chemicals as weapons of mass destruction (WMD). However, the military website Task & Purpose recently reported that James McDonnell, who heads the Department of Homeland Security’s WMD division, wants to classify fentanyl as a WMD.

McDonnell proposed this in a February memo to then-DHS Secretary Kirstjen Nielsen. The drug’s “high toxicity and increasing availability” make it “attractive to threat actors seeking nonconventional materials for a chemical weapons attack,” according to the memo.

There isn’t much evidence for classifying fentanyl as a WMD, but McDonnell’s suggestion could still find support for reasons that have more to do with politics than science.

According to federal law, weapons that can kill or severely injure "through the release, dissemination, or impact of toxic or poisonous chemicals, or their precursors" fall into the category of weapons of mass destruction.

McDonnell thinks fentanyl fits the definition. It is not clear that he is correct. And he neglected to mention that fentanyl has a legitimate medical use, too.

History of Fentanyl

Fentanyl is a powerful synthetic opioid typically prescribed to patients in acute pain or during surgeries. According to data from the National Center for Health Statistics, 48 million surgical inpatient procedures were performed in the United States in 2009. Most of those procedures involved administering fentanyl intravenously as an analgesic. 

Fentanyl was developed in 1960 by Belgian chemist Dr. Paul Janssen. The patent for fentanyl was obtained under his company name, Janssen Pharmaceutica. Fentanyl was first approved by the Food and Drug Administration in 1968 and introduced into the marketplace as an analog for Demerol, with plans that it would be used only for palliative care.

In 1978, I coauthored with my professor mentor, Dr. T.H. Stanley, a manuscript titled “Anesthetic Requirements and Cardiovascular Effects of Fentanyl” that described the use of high dose fentanyl for cardiac anesthesia.

The anesthetic technique we described allowed patients to undergo coronary artery bypass and valve replacement surgery more safely and with greater success because of fentanyl's unique pharmacologic properties. The technique was considered a seminal event in anesthesia for cardiac surgery.

Since the publication of that paper, millions of people have successfully undergone heart operations. The advance of using fentanyl in anesthesia may have helped some of those patients survive their heart operations.

It wasn’t until the late 1980s that testing was done for delivering fentanyl through a transdermal patch for the treatment of cancer-related pain and noncancer chronic pain. Later, oral transmucosal delivery of fentanyl was made available for cancer breakthrough pain. Each of these new uses of fentanyl exposed millions of Americans to the drug without evidence of an inordinate degree of harm if it was used as directed.

In contrast, nonpharmaceutical fentanyl has caused enormous harm. But as illicit use of the drug proliferates, so do myths about its dangers. McDonnell’s memo fits into an overarching narrative that bestows almost magical properties on fentanyl.

What's Behind the Fentanyl Panic?

The opioid crisis is real and the use of illicit fentanyl is often lethal. But mischaracterizing the effects of fentanyl may be only a political maneuver. 

In New York Magazine, Sarah Jones wrote about a 2017 Bloomberg News story that claimed fentanyl “is so potent that even a small amount — the equivalent of a few grains of salt — can be lethal.” 

“This isn’t really true,” wrote Jones. “You can’t get high or become ill simply by touching fentanyl, but police departments often claim otherwise. They report dramatic, but varied, symptoms that don’t mesh with established scientific evidence about fentanyl and the way it’s absorbed by the human body.” 

As Jones points out, Homeland Security’s WMD division has experienced a decline in funding because of the Trump administration’s focus on immigration and building a wall at the border. One way to reclaim some of that money for the WMD division is to build a case against fentanyl. 

Other drugs, such as ricin, pose greater risks and are probably more lethal than fentanyl as WMD’s. However, the word "fentanyl" packs a far larger emotional punch than ricin does because of the public's familiarity with it.  

WMDs are meant to kill the maximum number of people is the shortest amount of time. On the other hand, fentanyl -- even when it is laced with heroin -- is not intended to kill people. Drug cartels want to make money. Their goal isn't to murder their customers

Protecting Access to Legitimate Fentanyl 

The opioid crisis is now largely driven by nonpharmaceutical fentanyl and fentanyl analogs, not prescription fentanyl. Solving the opioid problem will require greater efforts to reduce the illegal production and distribution of illicit fentanyl. 

Could fentanyl be weaponized and used to attack citizens? Maybe, but not easily.  

The Pentagon realized the harm that an opioid attack could cause when the Russian military used aerosolized carfentanil -- a highly potent fentanyl analog --  against terrorists who had taken over a theater in Moscow in 2002. The drug killed dozens of innocent hostages and their captors, and it put the U.S. on notice that opioids could be weaponized.  

Before we classify fentanyl as a WMD, we need to know what that would mean for its legitimate use during surgery, or for cancer and chronic pain patients. Access to the medication for the treatment of pain must be part of the calculus in assessing if a relatively safe and effective drug should be classified as a WMD. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and the author of “The Painful Truth.”

You can find Lynn on Twitter: @LynnRWebsterMD. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Fearful Fortunes

By Carol Levy, PNN Columnist

I love fortune cookies, but have no faith in the fortunes themselves. I opened a cookie recently and out came this message: “Listen to what you know instead of what you fear.”

I am going through a bad time recently. For 19 years I have had a spontaneous remission of the worst of my trigeminal neuralgia pain.

The trigeminal nerve now seems to be regenerating and it worries me. I get sporadic tingling sensations in the numbed areas of my face, the result of a procedure done in 1979. Within the last few months, the spontaneous pain has also started coming back, not in the same way, and only one or two flares were horrific.

I am very fearful all the pain will return.

My new neurologist specializes in headaches. My situation is an unknown to him. He is very nice but is essentially throwing drugs at me, a new one each time the one he just prescribed doesn't help or gives me terrible side effects. He is throwing things at the wall and hoping something will stick. I fear nothing will.

I finally found someone who specializes in trigeminal neuralgia and facial neuropathy, my disorders. She asked for a copy of my medical records so she can decide if she will accept me as a patient.  I fear she will refuse. Or if she agrees to see me will be unable to help — like almost all the others.

A woman I know has fibromyalgia and Complex Regional Pain Syndrome (CRPS). For years she has been on high dosages of Dilaudid and another strong opioid. Her doctor decided he would halve her dosages of both. She was appropriately fearful of being tapered. But to her astonishment she found she could tolerate the reductions. She is happily doing just as well on the lower dosages as she had been on the higher amounts.

A lot of what we go through is often based on fear. It is legitimate. We know what the pain is like, we know what the medications do, we know what we can and cannot do. A lot of our choices are fear based: It hurts when I do this, so therefore I will never do it again.

I am able to do so much more, feel so much better when I am on this particular medication and this particular dosage, so I will refuse any changes. I am used to this doctor/physical therapist/specialist being involved in my treatment, even though I am not always happy with them, so I will stay anyway.

It is hard to give up the fear. Pain is not like painting a room a new color and then deciding you don’t like it. You can always just repaint. But change what I am used to doing to deal with the pain? That is not so simple. My pain may increase and be even more unbearable, more daunting.

But what if I take the chance and find I am okay?

Our minds and bodies have been programmed to do all we can to avoid pain. Fear is one of the ways we deal with it. As a kid you touch a hot stove and feel the excruciating pain of a burn. You very quickly learn to fear a hot stove, the fear keeping you from hurting yourself in the same way again.

It is almost counter intuitive to heed the fortune: “Listen to what you know instead of what you fear.”

What we know is why we fear. Maybe, at least for us, the fortune should read: “'Listen to what you know, but take the chance of fear anyway.”

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

What It’s Like to Be Forcibly Tapered Off Fentanyl

By Emily Ullrich, Guest Columnist

Although I have been on this chronic intractable pain, illness and medical refugee train for nearly a decade, I’ve been lucky to have the love and support my husband, family and wonderful people around the world that I've met through this shared anguish. They lift me up and allow me to lift them, when I can.

Right now, I'm holding onto them in utter panic, because they’re all that I have left.

About four years ago, I met a palliative care doctor, who had taken the time to read my 3-page health history. I take that paperwork with me to every visit to the ER or new doctor, so they can fully understand the things that I have tried, what worked, and what made things worse. No doctor had ever looked at it, until she did.

She approached me with zero judgment, and 100% sympathy and empathy. She actually cared about what I'd been through. I broke down sobbing, because I could finally let my guard down. I told her how my husband had to take a day off from work every month to drive me five hours and three states away, to see the only doctor I could find who was willing to treat my complicated needs. She told me I could see her instead. That was a tremendous gift.

Last year I began to sense that there was growing pressure on her about prescribing high doses of opioids, so I asked if I should worry about her cutting my meds or passing me off to another doctor. She reassured me that she would do no such thing.

Then came my visit one month later. I knew something was awry, because there was a case worker present for my appointment. My suspicions were confirmed when I was told the dose of my fentanyl patch would be tapered significantly lower. I was thrown into a tailspin.

With my doctor’s help and willingness to prescribe the meds and dosages that I needed, I had been able to achieve about a 4/10 on the pain scale, daily. I was able to participate in life again and do things that I love, like cooking, getting dressed up to go on a date with my husband, and other things that healthy people take for granted.

I was furious and traumatized that I was going to have to give up living my life. I still am.

On my next visit to see my doctor, she dropped another bomb. She told me that I had to choose between anti-anxiety meds and pain meds. Ironically, she was the one who put me on a higher dose of Xanax to help me cope with anxiety and insomnia. I felt betrayed.

I would not wish the hell of abruptly and simultaneously tapering off fentanyl and Xanax on anyone.  Even when I had a higher dosage, I still had pain flares that were not properly controlled. But since the taper began, I now have them daily.

I want this to be very clear: Fentanyl is a necessary medicine for many people with high pain levels. I have tried every other extended release medication known and none even touched my pain.

Fentanyl has gotten a bad reputation and patients who take it live with heavy stigma because the media usually report on fentanyl overdoses without distinguishing between illicit fentanyl and properly prescribed legal fentanyl.  

I would like to make a plea to the media: Stop the ignorant reporting and do your due diligence. By not distinguishing between legal and illicit fentanyl, you are causing even more strife for those of us who need the relief that only fentanyl medication brings.

I have still not gotten a clear reason for my doctor's decision to force a taper on me. I fear if I prod too much, she will totally cut me off or advise me to see someone else. This is making the struggle even worse, because even though we still have a pleasant relationship, I'm hurt and confused about this. I suspect it is being forced upon her.

As I wrote this, I had to take breaks for hours, sometimes days, because my pain is escalating to such a level that anxiety and insomnia are ravaging my mind and body. I have been in withdrawal (which, by the way, does not mean I am addicted to my medication, it means I'm physically dependent on it) for about four months.

As my medicine has been tapered, my life has crumbled. I get about two hours of sleep every five days. At times I get uncontrollable head shaking, leg kicking, arm flailing and vocal ticks. My pain gets so bad that I develop a full-body rash and migraines that last for days.

I don't know what is real and what my brain has concocted. I hold nonsensical conversations, like my grandparents did when they developed dementia. It is embarrassing and terrifying.

One night, while counting down the minutes until I could take my next dose of meds, I passed out from pain and anxiety, which scared my husband so bad that he called 911.

I hope that insurers, pharmacies and especially government officials who are infringing on doctors' ability to treat their patients, might read this and see that forcing tapers on patients is dangerous. There have already been many suicides because of them.

A gap is growing between many doctors and their patients. We know this is not “What's best for us.” It is actually a twisted way to make more money off the sick and vulnerable, forcing us to replace a medicine that is effective and safe when used responsibly with drugs that are ineffective, expensive and dangerous.

Emily Ullrich lives with Complex Regional Pain Syndrome (CRPS), chronic pancreatitis, endometriosis,  interstitial cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, depression, and other chronic illnesses. She is also a writer, filmmaker, activist, advocate, philanthropist and comic. As she is able, Emily devotes her time and energy fighting for pain patients’ rights.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

When Will Forced Tapering of Opioids End?

By Lynn Webster, MD, PNN Columnist

“Larry” recently wrote to me asking for advice. He describes himself as "virtually crippled totally" after having his opioid medication cutback.

"I am being forced tapered and the PA I now have will not budge one inch on the weaning, as he calls it. I hate him. I have never had a more callous doctor in my life," Larry wrote.

"What does one do in my situation? Blow my brains out? A[n] intentional overdose? I have two beautiful dogs that depend on me and a son who needs me. I have to stay here on planet Earth although I want out of here so bad I beg God to kill me every morning noon and night. It is my daily prayer."

Unfortunately, Larry is only one of many patients who are struggling to be heard by their providers. Physicians are under government pressure to adhere to the CDC’s 2016 opioid prescribing guideline.

Although the CDC designed its guideline as voluntary, government agencies interpreted it as a mandate instead. The Drug Enforcement Administration has pursued doctors who prescribe a level of opioids that exceeds the guideline's recommended daily limit of 90 MME (morphine milligram equivalent), even when no patients have been harmed.

According to Maia Szalavitz, writing for Tonic, Dr. Forest Tennant was one of the few physicians who still were willing to prescribe high-dose opioids for the sickest pain patients. The DEA raided his California office and home, allegedly because the agency had reason to believe some of his patients were selling their medication.

There simply was no evidence of that. But as a result of the raid, Dr. Tennant retired from clinical practice.

Szalavitz wrote that the raid "terrifies pain patients and their physicians, who fear that it could lead to de facto prohibition of opioid prescribing for chronic pain and even hamper end-of-life care."

Dr. Mark Ibsen in Montana had his license suspended by the state medical board for allegedly overprescribing opioids. According to Dr. Ibsen, the DEA warned him "he was risking his livelihood and could end up in jail if he kept prescribing." A judge later overturned the board’s decision.

As Dr. James Patrick Murphy, a Kentucky-based pain and addiction specialist, told the Courier-Journal, "many well-intended doctors are unfairly arrested 'all the time' in the hunt for those who recklessly contribute to patients' addictions and fatal overdoses."

As of this writing, The American University Law Journal plans to publish an alarming article by Michael Barnes, JD, about the raids on America’s top physicians.

Although few physicians are incarcerated for prescribing high dosages of opioids, many of them are threatened with losing their licenses to practice medicine. Doctors and pharmacists told a POLITICO survey that they felt enormous pressure to limit their prescriptions for painkillers. Their fear of the consequences of noncompliance with the CDC guideline exceeded their responsibility to treat patients with severe pain.

Second Thoughts About CDC Guideline

On April 1, the attorneys general of 39 states and territories wrote a letter on behalf of the National Association of Attorneys General to Dr. Vanila Singh of the U.S. Department of Health and Human Services. The letter expressed concern with the draft report of the Pain Management Best Practices Inter-Agency Task Force, which recommends changes in the CDC guideline to end the forced tapering of patients.

The attorneys general said "it is incomprehensible that officials would consider moving away from key components of the CDC guideline." Additionally, they expressed their hope that the report would be revised "to clearly state that there is no completely safe opioid dose."

Yet on April 9, the Food and Drug Administration issued a medical alert warning doctors not to abruptly discontinue or rapidly taper patients on opioid medication, because it was causing “serious harm” to patients, including uncontrolled pain, psychological distress and suicides.

Now it seems the CDC may be moving in the same direction.

Dr. Daniel Alford, a Professor of Medicine at Boston University, wrote a letter to the CDC asking it to address the misapplication of its guideline with a "public clarification." He was writing on behalf of Health Professionals for Patients in Pain, and 300 healthcare professionals signed his letter.

The CDC's response, published on April 10, echoed the FDA's statement. CDC Director Dr. Robert Redfield observed that the CDC guideline "offered no support for mandatory opioid dose reductions in patients with long-term pain." He reinforced the fact that the guideline was voluntary and that doctors should use their knowledge of their patients to determine which dosages were appropriate for them.

Dr. Redfield wrote that “CDC is working diligently to evaluate the impact of the Guideline and clarify its recommendations to help reduce unintended harms." And he agreed that "patients suffering from chronic pain deserve safe and effective pain management."

STAT News points out that the overzealous enforcement of the CDC guideline was indeed causing patients harm. "Denying opioids to patients who have relied on them — sometimes for years — may cause some to turn to street drugs, thereby increasing their risk of overdose," STAT warned.

According to The Washington Post, "Many patients have claimed that long-term use of the drugs is all that stands between them and unrelenting pain, and that they can take the medication without becoming dependent or addicted."

The CDC and the FDA now admit the guideline has been misapplied and mainstream media outlets are beginning to pick up the story. The question is: Will the DEA stop pursuing doctors who treat pain patients with levels of opioids that exceed the guideline's recommendations?

For Larry and other pain patients who have been forcibly tapered, the answer may be a matter of life and death.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and the author of “The Painful Truth.”

You can find Lynn on Twitter: @LynnRWebsterMD. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

You're as Healthy as the Food You Eat

By Barby Ingle, PNN Columnist  

It’s important that patients with chronic pain conditions maintain a healthy lifestyle, including getting enough sleep, exercising and eating healthy foods. I know this is so much easier said than done.

You are what you eat, right? We hear this often growing up, but what does it really mean? If I have a cupcake or a slice of cheesecake, am I going to live through the night? Over course I am. But day after day of poor eating will have long-term health consequences. And when our health is poor, other aspects of life are also likely to suffer.

Patients with chronic pain and illness typically lead a more sedentary lifestyle. Because we are less active and burn off fewer calories, we are at greater risk for developing other medical problems such as cardiovascular disease, diabetes and osteoporosis. I myself have been dealing with poor posture and sudden weight gain and loss. I fall easily and have trouble gripping and holding onto things. 

One area we have more control over is what we eat and who we are eating with. When I’m at home, my spouse cooks meals for me. I used to just let him choose what he wanted to make because I was just happy to have a meal prepared for me.

I have been really working on my eating habits since being diagnosed as "skinny fat" last year. I had to change where I am eating, how I am eating and what I am eating. Although my husband doesn’t eat the same food as me most of the time, my healthier habits have rubbed off on him.

I make a grocery list for what I want to eat, instead of just eating what he prepares for himself. I also now eat about 6 times a day instead of 3 bigger meals and a snack. 

Hopefully those around you are supportive of you making changes in your diet. When they see you make a conscious effort to choose your own meal and set your own portion limits, they may be empowered to pay attention to their own habits. You don’t have to say “no” to everything, just keep indulgences under control, eat smaller portions and be mindful of what you are eating.  

As a former athlete, I know nutrition is crucial for good performance outcomes. But when I got sick, I let all of that go. I had more important challenges to focus on, or so I thought.

Nutrition plays a role in chronic pain and how we prepare our bodies to cope with the stress.  Make sure your doctor is doing frequent blood testing to check for any deficiencies you may develop. A friend of mine developed Hypokalemia, a potassium deficiency that led to a psychological breakdown and two mental hospital stays.

Medications can also affect your liver, kidneys and digestive system. Blood testing can help prevent this from getting out of control and let you know if dietary supplements are needed to counter poor vitamin absorption.  

Maintaining good nutrition and hygiene may be difficult, but are very important. My new reality is that I am disabled and need to ask for help. I have to pay attention to what I eat, my hormones, my vitamins and everything I put on and in my body.

Eating is an important part of our lives and healing is a process. I have to control the parts of my life that I can to be able to live the life that I want.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

An Open Letter to the CDC Center for Injury Prevention

By Richard “Red” Lawhern, Guest Columnist

Dear Dr. Robert Redfield and Dr. Debra Houry,

By its passive refusal to conduct a thorough review of the impact and outcomes of its 2016 opioid prescribing guideline, the CDC’s National Center for Injury Prevention and Control is actively causing harm to hundreds of thousands of pain patients.   

Deserted by their doctors in a hostile regulatory environment, many are going into the streets seeking pain relief.  Possibly hundreds may already be dead of illegal fentanyl poisoning or suicide.  Military veterans, in particular, face draconian restrictions on the availability of safe and effective opioid medication therapy.   

And all for no good reason!

I suggest with every intention of professional and personal courtesy, that government organizations can no longer stand aside from this centrally important issue.  Such a stance will make you and other federal agencies accessories to state-sanctioned torture and negligent homicide.  That is unacceptable.   

As a former military officer, I respect a well-tried motto that I urge each of our regulators to take on as their own:   

      Lead, follow, or get out of the way! 

It has become clear that the CDC guideline must be immediately withdrawn for a major rewrite.  In its present form, the guideline is unjustifiably biased against opioid pain relievers, factually incomplete, in error on basic science, and founded on untested assumptions that do not hold up under any degree of careful scrutiny.   

The guideline is directly responsible for a vast regulatory over-reach by DEA and state authorities that is driving doctors out of pain management and denying safe and effective pain treatment for hundreds of thousands of patients.  

The CDC guideline has been publicly repudiated by no less an authority than the American Medical Association. Over 300 medical professionals have called for a rewrite of the guideline from the ground up. And a recent draft report by a federal task force calls for a reorientation of the guideline towards individualized patient-centered care, not the one-size-fits-all approach of the CDC. 

Multiple published papers have conclusively invalidated the guideline’s contention that there is a maximum dose threshold of risk for opioid addiction and overdose.   

Likewise, contrary to assertions in the guideline, there are presently no validated long-term studies to support the use of non-opioid analgesics and NSAIDs, or the off-label prescribing of anti-seizure and anti-depressant drugs to treat pain. No Phase II or Phase III trials have been published on "alternative" techniques such as acupuncture, massage or meditation.  And there are no trials which directly compare these techniques to opioid therapy under documented protocols.  Alternative treatments can at best be regarded as adjuncts to be added to analgesic or anti-inflammatory treatment.  

Published papers also demonstrate that criteria used by CDC and other federal agencies to identify risk of opioid abuse or overdose have very limited predictive accuracy. These faulty criteria are now being used by Prescription Drug Monitoring Programs (PDMP’s) to "flag" patients presumed to be at risk, who are in fact not at risk but are being denied pain treatment due to false alarms.  

Opioids, Overdoses and Demographics 

We can now take this narrative a step further.  I have compiled overdose data directly from the CDC Wonder database and from the Agency for Healthcare Research and Quality Data. This data focuses specifically on deaths directly attributable to opioid-related overdoses or suicide. The chart below shows rates of mortality by age group from 1999 to 2017.

GRAPHICS BY RED LAWHERN

Note that the highest rates of opioid-related mortality are among youth and young adults, while the lowest rates are among people over age 55.  Moreover, mortality in youth has skyrocketed by 1,800% over 17 years, while remaining relatively stable in people 55 and older.

The chart below documents the contrast in opioid prescribing by age group in 2016.  Unsurprisingly, older adults and seniors are much more likely to experience chronic pain and are prescribed opioids at a rate nearly double that of young adults. These two demographic trends contradict the idea that opioid overdoses are linked to prescribing.  They’re not and the evidence proves it. 

An updated analysis report further summarizes major themes we found in the overdose data.  The report reveals that “over-prescribing” of medical opioids was never a significant driver in opioid overdoses. There is no cause-and-effect relationship between rates of opioid prescribing versus rates of opioid overdose. In fact, it can be argued that in states where prescribing rates are highest, the trend may be in the opposite direction. 

The downward sloping red line in the chart below is called a "regression" line.  This is the trend line for the overdose and prescribing data from all 50 states in 2016. If there were a connection between high rates of opioid prescribing and overdoses, we’d expect the regression line to be pointing upward, not downward.

Overdose mortality rates are actually lower in high-prescribing states! 

One plausible explanation for the downward sloping line is that in states where prescribing has been more suppressed, patients are being driven into unsafe street markets or are committing suicide when overwhelmed by pain.   

These findings have previously been published in the blog of Dr. Lynn Webster, former President of the American Academy of Pain Medicine and author of "The Painful Truth." 

The implications of this analysis are glaring: the National Center for Injury Prevention and Control has created a fatally flawed guideline which actively increases injury rather than reducing it.   

Taken in sum, the evidence reveals that key assumptions on which the CDC guideline is based are simply and conclusively wrong.  Continued refusal to reevaluate the guideline is morally, ethically, medically and legally wrong. The 2016 CDC guideline on opioids must be retracted.  NOW! 

(Editor’s note: Dr. Redfield is CDC Director and Dr. Houry is Director of the CDC National Center for Injury Prevention and Control. A longer version of this open letter has been sent by email to other federal agencies and officials.)

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids.  Red is co-founder and Director of Research for The Alliance for the Treatment of Intractable Pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Can Pain Be Used to Treat Pain?

By Jeanne McArdle, Guest Columnist

“Can you cure pain with more pain?” was the provocative question posed last month by National Public Radio’s Invisibilia podcast, “The Fifth Vital Sign.”  

The show features the story of Devyn, a 16-year old former gymnast living with chronic pain. Devyn broke the end of her thighbone and required surgery, but the injury never fully healed and her pain was spreading. She was diagnosed with “amplified pain syndrome” and enrolled in a rehabilitation program for children at a Kansas City hospital that combines intense physical therapy with psychotherapy.

Put simply, Devyn was taught to ignore her pain by being exposed to more of it.

The resounding backlash from the chronic pain and illness community was swift and fierce, blowing up NPR’s social media feeds with charges of endorsing torture and demands to pull the episode. An apology for “triggering” pain patients from podcast hosts Hanna Rosen and Alix Spiegel served only to generate more ire.

NPR’s Public Editor, Elizabeth Jensen, stepped in on March 15, publishing an opinion piece that parsed individual points of contention while somehow missing the main one: Patients were outraged that NPR provided free publicity to treatment programs that put children in tremendous pain on purpose.   

The original pain rehabilitation program profiled in the Invisibilia podcast operates out of Children’s Hospital of Philadelphia. It is based on founder Dr. David Sherry’s belief that we do not accept pain as a natural part of life anymore. We focus too much attention on pain and try to eliminate it — often making it worse.  

Is there scientific evidence to support the theory that paying too much attention to pain causes it to spread elsewhere in the body? I couldn’t find any. I believe Sherry’s idea is just woo and bunk. Widely accepted pain research shows that once nerves are sensitized it takes less and less stimuli to create more severe and widespread pain. It is important to break that cycle and to treat the pain, before moving forward with physical therapy and other treatments.

Sherry’s program takes the opposite approach. It rests on the unproven idea that flooding the patient with pain will reset her brain’s response to pain. Take away the patient’s pain meds, force her to engage in many hours of hard exercise each day, subject her to other painful stimuli, and her brain will no longer process pain as dangerous. It will become bored with pain.

Would you want someone with such an extreme view of pain to be in charge of your pain management program? Would you want him in charge of your child’s pain management program?

On March 20, the Society for Pediatric Pain Medicine weighed in with an open letter to Cara Tallo, Invisibilia’s Executive Producer:

“(We) are deeply concerned that your episode promotes the misconceptions around pediatric pain and undermines the diligent scientific discovery by scientists, doctors and clinicians over the past several decades.

Pain is NOT simply a matter of attention and psychological state of mind. It does not just respond to putting children in intense/more intense pain and teaching them to push through.

Instead, it requires a clear understanding of its complex nature and treating the physical, biological, and psychological issues carefully and simultaneously, in a delicate dance that sometimes may be harder in the beginning.”

The Invisibilia podcast followed Devyn as she participated in the pain program at Children’s Mercy Hospital in Kansas City, where the goal was “to put Devyn in as much pain as they possibly could.”

Devyn and other patients are told to jump in and out of a pool as fast as they can for five minutes straight. One of the girls struggles to swim and jump in and out because she’s lost the use of one side of her body. She is cut no slack.

During the podcast we hear Devyn’s trainer deny her asthma medication when she has trouble breathing. The trainer tells Devyn to stuff a tissue up her nose and continue to exercise even when she springs a nosebleed. We hear Devyn vomit from exertion. Apparently, exercising to the point of vomiting is common; there are barf bags set up around the gym. Devyn is told to “push through” no matter what. 

The girls who enter this rehabilitation program have, we’re told, completed extensive medical testing to rule out underlying medical problems. But people in the pain community know how often diagnoses are missed. It can take years to find a doctor who even knows what to look for. We know how much harm can be inflicted by inappropriate therapy. 

The program claims to have precautions in place so that patients with Ehlers-Danlos syndrome (EDS), a condition that causes fragile connective tissue and autonomic dysfunction, don’t injure themselves. Having EDS myself, I know that the essence of this program — pushing people through pain — is inappropriate for anyone with EDS.

I have personally met and have spoken online to other EDS patients who have been through Dr. Sherry’s program and emerged from it with more injuries and pain than they had when they began. There are even reports of people who have come out of his program with PTSD. It is easy to understand how that might happen. 

Even if these programs worked some of the time for some people, they are bound to harm others. Pain is complicated. We are only beginning to understand its mechanisms.

Attention is not a switch that can be turned on or off. Attention can take many forms. Attention can be nonjudgmental. It can be loving. It can be kind. It can be curious. It can be gentle. Choosing the proper form of attention to bring to your pain can be a tool for dealing effectively with it. Attention is not the blunt, malign force that the podcast describes.

We have lived through decades-long diagnostic delays while enduring brutal and futile treatments. We have been blamed for our symptoms only to discover they were beyond our control. We know how easy it is to harm, how difficult it is to heal, and how much the larger community wants simple solutions to our complex problems.

The backlash against NPR from the pain community was actually a plea to “First do no harm.” Programs that deny pain have permanently, irreparably harmed countless pain patients and chronically ill people. Don’t present them as solutions. We deserve better and children with widespread pain deserve better. 

Jeanne McArdle lives with Ehlers-Danlos syndrome. She administers a regional support group for people with EDS in Central NY and has served on the boards of several nonprofits. Jeanne is a former technical writer and earned an MPS in Communication from Cornell University.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Finding Validation at the Migraine Symposium

By Mia Maysack, PNN Columnist

It was an honor to attend the annual Migraine Symposium and Awards Dinner held by the Association of Migraine Disorders (AMD) this past weekend at Brown University in Providence, Rhode Island.  

At the symposium there were more than 25 experts covering topics from breakthroughs in migraine research, emerging technology, holistic treatments, medicinal cannabis and one of the most painful conditions known to mankind: cluster headaches.        

As someone who lives with multiple brain diseases and disabling chronic intractable pain, sharing space with migraine community members and healthcare professionals that sincerely care made the occasion extraordinarily meaningful to me.

I was introduced to many exceptional human beings, each of whom I could easily write a column about, but for now I'd like to shine the spotlight on the President of AMD, Dr. Frederick Godley.  Not only is he an extraordinarily intelligent and kind soul, his positive attitude illuminated the entire room

#ShadesforMigraine

Let me share one of the very first moments of validation I'd ever experienced as a person living with migraine and cluster headaches caused by post-bacterial meningitis. Having inquired with many healthcare professionals as to whether or not I am living with a traumatic brain injury (and been disregarded by each and every one), my eyes fill up with tears while rejoicing when I write that although I am not a patient of Dr. Godley or being treated by him, he acknowledged that possibility.  

At the end of the day, it doesn't do those of us coping with severe ailments much good to fixate on any specific diagnosis. What's most important is we find a way to manage whatever hand we are dealt. But the validation helps. There have been moments when I've begun to question my own sanity. There's no possible way my head could be hurting *this* bad or for *this* long. Most others are in persistent disbelief as well, even though I crack jokes that if I were to ever wake up pain free, then I must be dead!

I am grateful that I am not and tremendously excited about the future possibilities in migraine treatment. Considering that for about 30 years one of our only options was a small class of medications, now is the best time to get involved in the migraine community because we're moving forward with such momentum. There have been funds granted for much needed further research.

PTSD and Psychedelics

Some other thoughts about the symposium:

The very significant validation that post-traumatic stress disorder (PTSD) is a common underlying element of pain or even a potential cause of it. Think about it. If your own body feels as though it is fighting and turning against you on a daily basis, how are we to live without stress or experience any sense of security? 

It's not as common as it should be to go into a doctor's office and be addressed as an entire person. In my experience it has been: “Let's do what we can to mask the symptoms and settle on normalizing what’s left.” That is not treatment. Unacceptable.

The same small class of medications that are one of the only options for people living with ongoing head pain have a similar chemical makeup to Psilocybin, a psychedelic compound found in mushrooms. Psilocybin and LSD are beginning to have more credibility as potential options in treating Trigeminal Autonomic Cephalalgia (TAC) or cluster headaches. There's hope they could be helpful in treating other conditions as well, despite the fact they've got an overall reputation as being hazardous drugs. 

Ever come across a rule that just seems absolutely ridiculous? That's kind of how I feel about the current classification of these substances. We all know it only takes one person to essentially ruin things for everyone else. As a result, most people think this kind of stuff only causes harm and chaos.  No one is suggesting that anybody should go to their local drug dealer and score a bag of whatever -- we’re discussing potential. It all boils down to the science and our focus here is solely medicinally related.

Much like we've been exploring the use of CBD without THC, we are moving forward with learning more about these other substances -- potentially without the psychedelic or hallucinogen properties. Perhaps they're needed to induce relief. And if that is the case, in what micro-dosage could this possibly be prescribed in a safe, effective way?     

Although I am not using them, I've known others who’ve had successful results. In the proper way and for the right reasons, I have also chosen to advocate for them, as there seems to be far less complications with more natural options than those from the pharmaceutical realm. Each approach has its rightful place and there's no one-size-fits-all for everyone. 

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

What About Pain Patients Who Don’t Get Better?

By Roger Chriss, PNN Columnist

The standard narrative of the opioid crisis focuses on pain management run amok. From duped doctors drugging patients into dependency to pill mills pumping painkillers into vulnerable communities, the narrative assumes chronic pain is a treatable ill.

“Looking back it’s clear that using opioids to treat chronic pain — backaches, bum knees and the like — might well be considered the worst medical mistake of our era,” wrote Haider Warraich, MD, in a recent opinion piece in The New York Times.

But what about the people who don’t get better?

There is a world of difference between “bum knees” and major diseases and disorders. From ankylosing spondylitis to sickle-cell disease, sometimes the diagnosis is permanent and the clinical course is progressive and degenerative. Care for such conditions is supportive and palliative. Affected people do not get better.

This distinction, between conditions like low back pain that often improve or resolve on their own versus progressive and degenerative conditions like Charcot-Marie-Tooth disease or multiple sclerosis, is often overlooked.

Patients treated with analgesic therapy, opioid or otherwise, are often judged on their level of improvement.

“Despite the limited improvement of clinical outcomes, most patients keep their long-term opioid prescriptions. Our results underscore the need for changes in clinical practice and further research into the effectiveness and safety of chronic opioid therapy,” concludes a study of chronic pain patients recently published Pain Medicine.

Left unsaid is anything specific about the study’s 674 patients’ diagnoses or expected clinical outcome. There was a tacit assumption that the patients should have improved and stopped taking opioids, an expectation that therapy should have been restorative and not just palliative. There is also an implication that non-restorative therapy is somehow inferior and not getting better is in effect a failure.

Often, however, that “failure” is the best that modern medicine can offer. Treatment does not necessarily mean clinical improvement and sometimes it doesn’t even mean halting progression of a disease. Instead, it may be about improving patient safety, such as the use of balance training for people with Meniere’s disease or peripheral neuropathy in the feet, or about improving activities of daily living, such as the use of assistive technology for people with muscular dystrophy or Ehlers-Danlos syndrome.

The list of chronic, progressive and degenerative disorders is long. The very complexity of the human body makes for a vast number of points of failure, from genetic mutations that cause inborn errors of metabolism to immune system dysfunction causing rheumatoid arthritis or lupus. There is the aftermath of chemotherapy, surgery and trauma, too.

MalaCards Human Disease Database has almost 20,000 gene-based disease entries. The National Organization for Rare Disorders includes over 1,000 diseases in its database. Though each condition may be rare, the total number of affected people reaches into the millions in the United States.

A common thread in current coverage of the opioid crisis is that people with chronic pain can and will get better, especially if they stop taking opioids. But a recent study of patients who stopped opioid therapy shows mixed results.

“Half of the former opioid users reported their pain to be better or the same after stopping opioids; however, 47% of the sample reported feeling worse pain since stopping their opioids,” researchers found. “As the pendulum swings from pain control to drug control, we must ensure that the response to the opioid epidemic does not cause harm to individuals with chronic pain.”

There is tendency not to see chronic pain patients as individuals and to lump them all together into one group. This may explain the mixed results in many recent studies on pain management, including on medical cannabis. The patients’ diagnoses and expected clinical outcome are often ignored, which in turn leads to overlooking the value of a therapy that may seem ineffective but is actually helpful.

The reality of long-term pain management for chronic, progressive and degenerative conditions is that there are no great options. It's all trade-offs, risks and benefits, and a careful balancing of medical needs. Sometimes there is little if any improvement. But if you're facing a lifetime of chronic pain, that little bit can still be worth a lot.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.