Lessons from ‘The United States of Opioids’

By Roger Chriss, PNN Columnist

Harry Nelson’s new book “The United States of Opioids: A Prescription for Liberating a Nation in Pain” looks closely and productively at the opioid overdose crisis. It comments on origins and causal factors, and offers pragmatic policy ideas for addressing it. The book is succinct and well-organized, designed for easy reading and reference.

Nelson starts with a dire description of addiction and overdose, calling the U.S. opioid crisis “American healthcare’s self-inflicted wound.” He then gives a brief history of opioids, explaining the three waves of the crisis, culminating in illicit fentanyl and “an increasing crackdown on physician overprescribing.”

Nelson touches on the history and science of opioids, then looks at causes of the crisis. These include not only Purdue Pharma and the Sacklers, but also drug distributors, retailers and health insurers. Institutional and regulatory failures on opioids are not ignored.

“The overarching problem when it comes to physician overprescribing has been insufficient training and education on how to prescribe opioids,” he writes. “The FDA approved these drugs and oversaw the data concerning the risks of their misuse, abuse, addiction, and overdose.”

But Nelson digs deeper, looking at the underlying social and cultural determinants that play into the longer term. He cites a 2018 University of Pittsburgh study that underscores that opioids are part of a broader trend in which abuse of multiple drugs and a rising drug overdose rate “that shows no signs of slowing, with sub-epidemics of different drugs over time.”

Unlike other books, Nelson writes in depth about how to address the crisis: “I believe that our attention should first be focused on a host of intersecting trends that point to suffering in America — parallel crises that include suicidality, anxiety, depression, and pain.”

He explores other options for pain management, from NSAIDs and nerve blocks to non-pharmacological techniques: “It is critical to push insurers and government programs to cover non-opioid treatment, even if it means spending more to achieve this priority.”

Nelson includes a whole chapter on cannabis and other alternative therapies for opioid addiction, in particular kratom and psychedelics. He is optimistic but tentative about cannabis: “Despite the potential to address health issues, consumers need to be cautious about both the claims and contents of cannabis products.”

He also looks at addiction treatment, including AA-type abstinence programs and medication-assisted therapy, and notes that “the biggest challenge in addiction treatment is the complexity of addiction itself.”

Nelson is highly critical of much of the response to the crisis to date: “When I think about the government and health system’s approach for taking on the opioid crisis, the thing that strikes me most is how much it feels tactical rather than strategic.”

Nelson condemns the rampant fraud and patient brokering in the recovery industry. But he also points out that addiction treatment itself needs improvement.

“We will know that addiction treatment has ‘arrived’ in terms of its integration into healthcare when we have relatively uniform professional and program licensure requirements from state to state — something seemingly decades away,” he wrote.

Nelson lists seven general recommendations for the crisis in his OPIOIDS acronym:

  • Outreach for prevention and early intervention

  • Physician improvements

  • Innovation in pain and addiction care

  • Overdose interventions

  • Interdiction off illicit opioids

  • Data analytics to better track the crisis

  • Strengthening access to addiction care

He emphasizes the value of harm reduction, improving social capital, and organizing prevention in schools and the workplace — instead of “stop gap” measures that do little beyond preventing fatal overdoses.

“The key to solving the opioid crisis lies in not being satisfied with tackling the overdose death issue, but in addressing two of the fundamental problems that got us here: the inadequate management of ongoing issues for people living with chronic pain, which overlaps with the second problem of people living with an opioid use disorder (OUD),” he writes.

Finally, Nelson gives a warning: “If we think about the opioid crisis as the ‘canary in the coal mine,’ it’s warning us that we need to address a much bigger, toxic set of problems.”

For all the book offers, it also has problems. Nelson overstates the number of people with opioid use disorder, misrepresents the complex nature of opioid initiation, and misconstrues the varied trajectory of heroin addiction. Most importantly, Nelson gives little attention to rising rates of cocaine and methamphetamine overdose deaths, and ignores that most overdoses involve multiple drugs.

“The United States of Opioids” offers a suite of tools and ideas for moving forward, a refreshing change from the many righteous rants or poignant laments about the crisis.

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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.

A Pained Life: Who Benefits From the Opioid Crisis?

By Carol Levy, PNN Columnist

For the first time in almost 40 years, I have to fight to get my codeine prescription filled.

I understand intellectually what so many pain patients have said about the frustration, upset and upheaval they experience when a pharmacist refuses to fill their prescription or insurance refuses to pay for it. Or harder still, what they go through having their opioid medications cut down or stopped completely.

But I did not understand the emotional side of it until it happened to me.

The insurance company refused to pay for my codeine prescription. They had no problem filling it for the last many, many years but suddenly they need "authorization" from the doctor. How does that make sense? Writing the prescription was authorizing. Why do they need to add a second permission?

It is now over three weeks. The pharmacist tells me they have contacted the doctor's office three times: "You need to call them and find out why they haven't responded."

When I call the office, they tell me the pharmacy never sent over the forms they need.

So I call the pharmacy back. They recite a fax number for the doctor’s office. It is not the right number. I give them the number the doctor's office just gave me. “We'll try it again right now,” she says.

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I keep my fingers crossed and hope I don't run out of pills before it is resolved — if it is resolved.

The pharmacy clerk and I talked the day the prescription was refused by the insurance company. I was venting my frustration over not being able to get the prescription filled, especially because it is the same prescription I have had for years, one that was always covered by my insurance.

To my surprise she says: "It is not just narcotics. Many insurance companies are refusing to cover or making unwarranted demands, requiring many more hoops to jump through. They have refused to cover certain creams and hormones, other prescriptions, non-narcotics that are routinely given and, until now, paid for by the insurance companies."

This is appalling. And makes no sense.  

But then I start thinking about it and was struck by a thought: Yes, there is an opioid crisis. And we’ve all heard the reasons they blamed patients for the “crisis.”  But I think there may be another factor at play: the profit margin.

After all, if we pay insurance premiums but they refuse to pay for our medication -- forcing some folks to pay cash rather than wait for all the rigamarole to be completed -- then the insurance company comes out way ahead. They get our monthly fees and work to make sure we get as little as possible in return. 

I hope I am merely being paranoid. But somehow, I doubt it.

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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.

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.

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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.

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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.

How Government Shutdowns Worsen the Opioid Crisis

By Lynn Webster, MD, Guest Columnist

On October 26, 2017— a little bit more than a year ago — President Donald Trump declared that the opioid crisis was a national Public Health Emergency. Most Americans seemed to back his initiative to stop opioid abuse, and to reduce drug supply and demand.

However, it seems the recent 35-day government shutdown and Trump's desire to build a border wall have been at cross-purposes with his concern about addressing the opioid crisis.

Two key aspects of Trump’s opioid plan were prevention and treatment of opioid use disorder. Prevention, in part, means reducing the supply. However, everything in the supply is not equally problematic.

Opioids fall into two major categories: those that are prescribed and those that are smuggled into the United States. The number of overdoses associated with prescription opioids has remained essentially unchanged since 2011, while the number of opioid overdoses due to illicit fentanyl and other synthetic opioids surged from 3,000 in 2013 to more than 29,000 in 2017. Most of these drugs originate in China.

One of Trump's major arguments for building a wall is that most drugs that kill Americans are coming over the southern border from Mexico. However, that conflicts with the final report of his opioid commission, which found that "we are losing this fight predominately through China."

Mexican cartels do smuggle illicit opioids across the southern border in passenger vehicles and tractor trailers, often at legal points of entry. Heroin and fentanyl are also smuggled into the U.S. by sea and air or through the mail. A physical barrier doesn’t block any of these types of entry.

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The U.S. Food and Drug Administration (FDA) is tasked with inspecting mail to prevent drug smuggling. Before the government shutdown, FDA Commissioner Scott Gottlieb was calling for more postal inspectors to intercept shipments of opioids. He wanted the government to be able to inspect 100,000 suspicious packages per year, but that would have required double the number of personnel that he had.

Government shutdowns handicap those efforts because it is difficult to hire during shutdowns. It can be challenging just to retain the employees you already have.

The Department of Homeland Security works with the U.S. Coast Guard and the U.S. Customs and Border Protection to patrol the South Pacific Ocean and the Caribbean Sea to stop drug smuggling. These efforts may have been impeded during the shutdown, because some of these "essential" employees had to decide whether to work without pay or call in sick. We can assume that some of them chose the latter course of action. Some government employees may be looking for other jobs because they want a reliable paycheck.

Ironically, due to increased scrutiny at the border, drug smugglers have gotten more creative, increasing their use of tunnels, boats, air and even catapults. These efforts may have been more successful due to the lack of personnel guarding trouble spots because of the shutdown.

Addiction Treatment Impacted

Government shutdowns increase the likelihood that opioids could find their way past our borders. And our ability to treat people with opioid addiction may also be compromised.

Providing treatment for addiction was the other important part of Trump's plan for addressing the opioid crisis. An estimated 2.1 million people had an opioid use disorder in 2016, yet only about 20% had access to treatment. One of the reasons so few people are treated is that not enough clinicians are trained and certified to treat opioid addiction. The president's initiative requires increasing the number of clinicians certified to treat addiction.

Buprenorphine (Subxone) is one of the tools physicians use to treat opioid use disorder. Doctors require special training and certification to prescribe the drug, as well as a waiver from the Drug Enforcement Agency. During the government shutdown, the DEA was still able to review doctors’ applications, but there were about 30% fewer certifications than there were before the shutdown. It is unclear if that was due to the shutdown or not.

Regardless of whether there will be a physical wall on our border with Mexico, we can see the potential damage that the recent government shutdown can have on curbing the opioid crisis. Congress will now discuss the merits of various options to secure the border, and President Trump is threatening another shutdown if a border wall isn’t funded.

But one thing we should take away from the recent experience is that there isn't much point in saving ourselves from illegal immigrants if we can't protect ourselves from the dangers posed by a government shutdown.

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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. Webster is the author of “The Painful Truth: What Chronic Pain Is Really Like and Why It Matters to Each of Us.”

You can find him 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.

The 7 Golden Rules of Opioid Prescribing for Patients

By Jeffrey Grolig, MD, JD, Guest Columnist  

“Don’t do it!” is the advice often given to brand new physicians about whether to specialize in pain medicine. Increasing numbers of doctors are being fined, disciplined or arrested due to scrutiny caused by the nation’s opioid crisis. Every single opioid prescription, even the mildest painkiller, is being tracked, and prescription drug database searches tell the DEA and state board investigators who to watch.  

The unfortunate innocent victims of this crisis have been those legitimate patients who suffer in chronic pain, with up to 100 million in the United States alone. Each time a physician or pharmacy is attacked, thousands of pain patients must pay the price.

A pharmacy in my northern California town recently closed after the owner was charged with 200 counts of failing to properly keep records. Each count carries a $20,000 fine.

A local physician’s license was restricted for failure to warn in writing about the risks of combining sleeping pills with opioids. This family physician had already spent $56,000 in legal fees for previous documentation lapses.

A pulmonary specialist with English as his second language was arrested for prescribing codeine-containing cough syrup to four undercover DEA agents posing as patients. He is facing 20 years in prison and $2 million in fines.   

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I still accept pain patients, but my background as an attorney compels me to use “universal precautions,” something I advise every physician who prescribes opioids to do. This boils down to following what I call “The 7 Golden Rules of Opioid Prescribing.” If you, as the patient, understand that your doctor must follow these 7 golden rules, it will make it much easier for you to obtain excellent pain management, including opioids.  

I developed the 7 golden rules by analyzing the most common documentation lapses of doctors who were disciplined or prosecuted. I included them when I wrote the “Physician Primer: Prescribe Like a Lawyer” to empower doctors to think and practice like a lawyer and not lose their careers over simple documentation errors.

If you write a cover letter like the one below to your current or prospective physician, touching on each and every one of these 7 golden rules, your pain control will vastly improve, I promise. 

Dear Doctor,

#1 I have a legitimate medical reason for needing opioids. My medical diagnosis is… (be specific: examples include diabetic neuropathy, failed spine surgery, spinal stenosis, CRPS, etc.). Attached is my MRI report (or EMG, CT, X-ray, Bone Scan, lab test, etc.) proving this.  

#2 I am not now, nor have I ever been addicted to prescription medication, illegal drugs or alcohol.   

#3 I have no depression, psychosis or bipolar disorder.  

#4 I understand all the risks of opioids and related medications, as well as my options for all non-opioid alternative treatments.  

#5 I am not taking benzodiazepines and drinking alcohol.  

#6 I have attached my last 12 months of medical records (not applicable if you have been with the same physician for one year).  

#7 These records reflect that I am an honest, compliant and responsible patient.  

Respectfully,  

Pain Patient

If you do not meet these criteria, it means you are in a higher risk category and would be better managed at a university medical center or a teaching hospital. To my knowledge, the DEA or state medical board has never raided a teaching hospital or university medical center. 

The best way a patient can signal to me they are responsible and low risk is to write a letter covering each of the 7 golden rules, attached to one year’s worth of medical records. This essentially does my work for me, and it makes it easy for me to decide whether or not to accept the patient.

If your doctor still won’t budge, hand him my free “Primer Flyer,” a pamphlet that explains risk management, that’s available on my website: ThePhysicianPrimer.com.

If all else fails, have him watch my YouTube video on The 7 Golden Rules of Opioid Prescribing for Doctors. 

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Jeffrey W. Grolig, MD, JD, is a board-certified specialist in Physical Medicine & Rehabilitation. He has taught at UC Davis Medical Center in both the departments of Family Practice and Physical Medicine & Rehabilitation. Dr. Grolig has formerly worked as a licensed attorney and has authored 6 books.

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 Careful Reading of 'Dopesick'

By Roger Chriss, PNN Columnist

The new book “Dopesick: Dealers, Doctors, and the Drug Company That Addicted America” by Beth Macy describes the origins of the opioid crisis and the plight of people addicted to opioids, particularly in the Roanoke area of Virginia.

The book looks at the crisis from multiple perspectives, including local physicians and pharmacists, law enforcement and attorneys, community leaders and even drug dealers. Macy treats the story of opioids, addiction, and fatal overdose with sympathy and concern.

“Until we understand how we reached this place, America will remain a country where getting addicted is far easier than securing treatment,” she wrote.

Macy relies heavily on books like “Painkiller” by Barry Meier and “American Pain” by John Temple, asking questions these journalists explored but providing no new answers. In so doing, she perpetuates numerous media-driven myths about the crisis and misses opportunities to investigate important open questions.

Dopesick starts with the arrival of Purdue Pharma’s OxyContin and the rapid rise of addiction and overdose. Appalachia was among the first places where OxyContin gained a foothold in the mid-1990s, quickly ensnaring working class families:

“The town pharmacist on the other line was incredulous: ‘Man, we only got it a month or two ago. And you’re telling me it’s already on the street?’”

It is still not clear how OxyContin made it into the black market so deeply and quickly, but Macy concludes that overprescribing for chronic pain was a key factor in the crisis. She cites “recent studies” that the addiction rate for patients prescribed opioids was “as high as 56 percent."

Most studies actually put the addiction rate much lower, with the National Institute on Drug Abuse (NIDA) estimating it at 8 to 12 percent.

In the second part of Dopesick, Macy draws on the work of Stanford psychiatrist Dr. Anna Lembke in describing adolescent drug use:

“Across the country, OxyContin was becoming a staple of suburban teenage ‘pharm parties,’ or ‘farming,’ as the practice of passing random pills around in hats was known.”

But pharm parties were debunked years ago as an urban legend.  Slate’s Jack Shafer looked into their origin and concluded the “pharm party is just a new label the drug-abuse industrial complex has adopted."

Macy’s writing often echoes her source materials. On adolescent drug use, she writes:

“So it went that young people barely flinched at the thought of taking Adderall to get them going in the morning, an opioid painkiller for a sports injury in the afternoon, and a Xanax to help them sleep at night, many of the pills doctor prescribed."

Lembke herself wrote in the book ”Drug Dealer, M.D.” in 2015:

“Many of today’s youth think nothing of taking Adderall (a stimulant) in the morning to get themselves going, Vicodin (an opioid painkiller) after lunch to treat a sport’s injury, ‘medical’ marijuana in the evening to relax, and Xanax (a benzodiazepine) at night to put themselves to sleep, all prescribed by a doctor."

The similarities between Macy and Lembke (a board member of the anti-opioid group Physicians for Responsible Opioid Prescribing) are striking.  More importantly, the data on teenage drug use disagrees with both of them. According to NIDA, teen drug use has been in decline for most substances for the past 10 years. Which makes it hard to parse Macy’s and Lembke’s claims about high levels of medication misuse among the teenagers they describe.

Macy also perpetuates ideas about race in the crisis: “Doctors didn’t trust people of color not to abuse opioids, so they prescribed them painkillers at far lower rates than they did whites.”

“It’s a case where racial stereotypes actually seem to be having a protective effect,” she quotes PROP founder and Executive Director Andrew Kolodny, MD.

In fact, rates of addiction and overdose have been rising rapidly among African Americans for years and recent CDC data on ethnicity in overdoses shows no significant difference among black, white, and Hispanic populations. The crisis has long since evolved beyond omitting a particular minority group.

Why did it take so long to recognize the opioid crisis and work to stop it?  Macy assigns blame to the political unimportance of regions like Appalachia, the failure in many states to expand Medicaid under the Affordable Care Act, and addiction treatment that’s based on 12-step or abstinence-only programs. She writes about the treatment industry with almost righteous anger:

“An annual $35 billion lie -- according to a New York Times exposé of a recovery industry it found to be unevenly regulated, rapacious, and largely abstinence-focused when multiple studies show outpatient MAT (medication assisted therapy) is the best way to prevent overdose deaths.”

“The battle lines over MAT persist in today’s treatment landscape -- from AA rooms where people on Suboxone are perceived as unclean and therefore unable to work its program, to the debate between pro-MAT public health professionals and most of Virginia’s drug-court prosecutors and judges, who staunchly prohibit its use.”

But Macy doesn’t look at the full story that heroin addiction represents. She omits the shattered childhoods and serious mental illness often seen in heroin users, and ignores the complicated trajectory of substance abuse. She also skips the fact that heroin addiction frequently starts without prior use of any opioids.

Throughout the book, Macy follows the standard media narrative of the crisis, focusing on addiction as a result of pain management gone wrong. But most people who become addicted to opioids start with alcohol, marijuana and other recreational drugs.

What Dopesick may lack in depth and rigor, it makes up for in compassion and intensity. Unfortunately, Macy accepts at face value claims from experts when she should have fact-checked them.  Perhaps the errors will be corrected in a second edition, which could turn an interesting book into essential reading.

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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.

I Have No Life Without Pain Medication

By Teresa Brewer, Guest Columnist

In 2003, I developed a rare illness called retroperitoneal fibrosis, also known as Ormond’s disease. Many have died from this progressive and painful disease when their abdominal organs became blocked by a fibrous mass.

I have a fibrous mass in my right abdominal area that extends into my back and right leg. The mass was about the size of a soccer ball when it was found during a cat scan and exploratory surgery. The mass is smaller now, but I still have severe chronic pain. And because of the opioid crisis, I was weaned off pain medication in March.

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TERESA BREWER

My doctor sent my medical records and referral letters to 17 pain doctors. So far, none have accepted me. Many pain doctors are so busy they're not taking new patients, and many don’t know anything about retroperitoneal fibrosis or won’t take the time to learn about it.

I've been told, "I don't know about your illness and therefore I can't help you!” It’s devastating to hear that.

I do have an appointment at a pain clinic in September to talk with a nurse, get a physical and go over my records. Maybe then I’ll get an appointment to see a doctor. I HOPE! But then who knows, that could be another month or two. The lady who called said they have been overrun with new patients and were trying to see all they can.  But they have a 3-month backlog.

Because I was taken off pain medication, I missed my daughter’s wedding. That really upset and depressed me. She lives in another state and I was looking forward to seeing her get married. She called to tell me she was engaged, and we talked many times over the phone about the wedding. She set up appointments to get my hair and makeup done and even bought me two dresses. 

It totally devastated me to call her in April to tell her I wouldn't be able to make it. We both cried, and I cried almost every day until her wedding day. My son used FaceTime so I could at least watch the wedding, but it was not the same as being there in person. I was heartbroken. 

I also can't see my grandchildren until something is done about the pain. I have a grandson and recently have a new granddaughter, who was born in July. I haven’t seen her yet and haven’t seen my grandson since March. I love my grandson and granddaughter with all my heart!  I have no life. 

Doctors are taking many patients, including cancer patients, off pain medication because they fear losing their medical licenses. And some hospitals aren't giving pain medication to surgery patients. Instead they’re getting Tylenol or Aleve. That is not right! If anyone has surgery, and I've had six surgeries, you need something stronger for pain management.

Why let people suffer?  Many individuals who have abused pain medication are switching to heroin, meth or cocaine. A real drug addict will always find something to take. I've always hated taking medication, even for a headache, but when I became ill, I had no choice.

It seems they are more worried about addicts dying than about people who really need pain medication. I'm not talking just about me. Many people who live with retroperitioneal fibrosis have been taken off pain medication and are suffering.

An individual has no life when they are at home in major pain. It's very hard to get ready to go anywhere or do anything. Many of us are bedridden due to chronic pain. 

Is anything being done about this problem? If so, I'd like to hear it! 

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Teresa Brewer lives in Arkansas.

Pain News Network invites other readers to share their stories with us. Send them 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.

How Rx Opioids Saved My Firefighter Husband

By Sonia Bodie, Guest Columnist

A captain at a very busy fire department, a Homeland Security employee, and an instructor with the South Carolina Fire Academy. That was my husband’s life for 17 years. Brent and I both had busy careers in public safety. I'm a paramedic and a firefighter. 

One morning nine years ago, after getting off a particularly grueling 24-hour shift, we decided to drive to some property we own and place a trail camera to observe the wildlife. We drove our off-road vehicle many times before, but that day a grave mistake was made. Whether we were tired, careless or just from a sense of invincibility, I'll never know, but up an extremely steep hill we went!

Almost at the top, the four-wheeler lurched and rolled, throwing us both violently off. I sustained a lower leg fracture that had to be surgically repaired. Brent fractured three vertebrae in his neck. His neck was broken and life as we knew it came to a screeching halt. 

It was like a nightmare that just wouldn't end. Brent needed extensive surgery that included cadaver bones to replace his fractured ones, pins and screws, and a halo neck brace. This sort of thing happens to the people we care for, but this time it was the protector who needed protection. 

Brent’s career was put on hold, but in his mind if he did exactly what the physicians said to the letter, it would be just a matter of time before he would be back to work. He began physical therapy. Four to five days a week he attended. But the pain continued.

He was prescribed anti-inflammatory drugs, a TENS unit, ice and heat therapy. Brent tried them all, thinking his career was just a short step away. 

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BRENT AND SONIA BODIE

I recovered and went back to work. But my strong, never-sick husband was slowly becoming a man I barely knew. The pain in his neck was mind boggling, along with severe numbness and constant tingling in his right arm and hand. The severity of the pain completely changed him. 

After a year, Brent’s neurosurgeon gently told him that his part in the healing was over and that he wouldn't sign any medical clearance for him to return to full time firefighting duty.  Brent looked at the doctor with something between shock, horror and bewilderment.  With tears streaming down his face, in a voice so soft and cracking, Brent asked, "What do I do now? I've been a fireman since I was 18 years old. When will this non-stop agony end?" 

I couldn't believe things could get any worse, but they did. Talk of suicide started swirling. He shut down. I cannot count how many times I'd come home from my 24-hour shifts to find Brent curled up in a ball on the floor in so much pain.  

The straw breaker occurred one cold, windy morning.  I came home from work to find Brent sitting at the kitchen table with a pistol beside him. I was frozen in fear. I couldn't find my voice! He said, in a tone I'd never heard from him, "I will NOT continue to live another day, not one single more, in this much suffering and torture! I'm done!" 

I immediately contacted the doctor, who got Brent to see a pain specialist that day.  This was the beginning of a new life for us. I’m so thankful and grateful for this physician. I cannot say that Brent’s agony ended on the spot, but after three months of trying different pain relievers and doses, they found a medication regimen that worked for him. 

Brent goes there monthly. There are urine drug tests and visits with a psychologist before he sees the physician. This is a new season, one that includes opiates. They are taken exactly as prescribed and kept secure, locked in a fire safe.

I see the opioid crisis daily. I give my all as a medic to save those who have chosen to snort, ingest or smoke opioids, most of them illegal, for a life-ending high.  Then I come home to a beloved spouse, whose opioid medication literally saved his! 

I'm very fearful what will happen if Brent’s medication is lowered or stopped because of the new, yet antiquated, opioid prescribing laws. The persecution of the innocent, who require these life-giving medications, must cease.  My husband, who saved so many lives, depends upon it. And he's important too! 

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Sonia and Milton “Brent” Bodie live in South Carolina.

Pain News Network invites other readers to share their stories with us. Send them 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 Other Victims of the Opioid Epidemic

By Katie Burge, Guest Columnist

Imagine the fear, frustration, helplessness and anger you might feel upon learning that your doctor cannot treat you to the best of his or her ability because they’re afraid of being arrested. 

I don't have to imagine that because I am a chronic pain patient with a degenerative spinal condition, plus severe osteoarthritis and fibromyalgia; each of which cause severe chronic pain 24/7. Combined, they can make simple tasks like getting dressed in the morning sheer torture.

Pain patients are the other victims of the so-called opioid epidemic, the ones the media usually don’t mention unless they're blaming us for other people's drug usage. 

Patients are being forced to live in agony and, as a result, increasingly lose their lives due to catastrophic medical events, such as stroke, heart attack and even suicide.

These can all be triggered by the physical, mental and emotional pressures of trying to survive with inadequately treated chronic pain.

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Why?  Because politicians and bureaucrats (who refuse to admit the government is completely impotent at controlling the proliferation of illicit drugs) have managed to sell the public on the ridiculous premise that refusing medically necessary medication to one group of people will somehow alter the behavior of another group, and handily end America's drug crisis.

This approach simply does not work. Torturing vulnerable pain patients by refusing them life-giving medication will never make the slightest dent in the illegal drug trade because, sadly, people who want to get high will find something somewhere that will enable them to do so. 

Also, most of the prescription opioids that people abuse DO NOT come from doctors or pain patients. Less than one percent of legally prescribed opioid medication is diverted.  People in true pain are not going to suffer additionally by sharing or selling their medication. And doctors are not as careless with their prescription pads as the powers-that-be would like you to think.  

Nonetheless, the entities that control doctors’ licenses to prescribe opioids have yielded to political pressure by ordering doctors to either cut back on pain medication to the point that it's ineffective or stop opioid treatment altogether, regardless of patient need or outcome.

Inadequately treated chronic pain has stolen a great deal of my independence and quality of life, and though I hate the idea of taking pain medication at all, my greatest desire is to simply be able to fully participate in my own life again.  I will never be pain free, but I long to be able to play with my grandchildren, go to the theater or sit through an entire movie (and still be able to walk back to my car).

The mainstream media is also responsible for the ridiculous narrative that opioids have no legitimate clinical use and are immediately addictive. The result of this bias and hyperbole is that most folks believe outlawing the legitimate medical use of opioids can only be a good thing. Society teaches us that pain is somehow shameful.  We must “suffer in silence” and learn to control our pain without complaint or medical intervention. 

With such an abundance of myth and misinformation, it's no small wonder that actual facts about pain tend to get lost in the mix. Please allow me to share a few:

First, many overdose deaths are made to sound as though they were caused by a single prescription or even a single dose of opioids, when they are actually the result of a mixture of different medications, street drugs and alcohol. 

Second, chronic pain affects more Americans than heart disease, cancer and diabetes combined.  And studies have repeatedly shown that less than 4% of those who take opioid medication for pain become addicted.  They might develop a dependence or tolerance, but that occurs with many medications.

Physical “dependence” simply means that, if a drug or substance is stopped abruptly, the body will react by exhibiting withdrawal symptoms.  “Tolerance” occurs over time, as the dosage of some drugs might need to be adjusted as the body grows tolerant to its effects. Neither of these conditions is unique to opioids, nor are they necessarily indicative of addiction -- which is characterized by compulsive drug seeking behavior and use, despite harmful consequences.

Personally, I believe the question of addiction simply comes down to motive.  If your primary motive in taking opioids is to get high, you might be a drug addict.  If your only motive is pain relief and once that relief is achieved you do not increase the dose, you are not a drug addict.

Drug abuse is a complex social issue that has no easy fixes.  It should not, however, be confused with the medical management of chronic pain.  All life is precious and should be valued and protected, but not at the expense of others.

So, the next time your favorite TV show has a story line about someone going to the hospital and being transformed into a raving drug addict, or you hear yet another biased news story about opioids, do something about it.  You can help save lives by contacting the source of those fallacies and insisting that they tell the whole truth about the opioid crisis. Call them. Write a letter. Send an email.

We desperately need your voice, your prayers, your empathy and your compassion.

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Katie Burge lives in south Mississippi, which she calls a “a veritable wasteland” for pain treatment. 

Pain News Network invites other readers to share their stories with us. Send them 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 Grim Future of the Opioid Crisis

By Roger Chriss, Columnist

The opioid crisis continues to be misunderstood. In a speech last week in Tennessee, President Trump said the nation was making progress “getting rid of the scourge that’s taking over our country.”

“The (opioid prescription) numbers are way down. We’re getting the word out — bad. Bad stuff. You go to the hospital, you have a broken arm, you come out, you’re a drug addict with this crap. It’s way down. We’re doing a good job with it,” Trump said.

Indeed, prescription opioid levels are falling. In that sense, and only that sense, the numbers are down. But addiction stemming from medical treatment was never a significant factor in the crisis to begin with. A new review from the British Journal of Anesthesiology found that opioid dependence or abuse occurs in less than 5 percent of patients prescribed opioids for pain.

By most other measures, the opioid crisis is rapidly getting worse. The number of people addicted to heroin is rising, the number of ER admissions for overdoses is increasing, and the number of fatal overdoses from all drugs -- legal and illegal --  has skyrocketed to nearly 64,000 a year.

Drug deaths linked to illicit fentanyl and heroin now outnumber those from prescription opioids, as do overdoses involving medications used to treat depression and anxiety.

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The CDC, DEA and FDA increasingly recognize that illegal drugs, including diverted prescription opioids, are the key features of the current crisis. But stopping this flow has become a nightmarish challenge.

The significance of illicit fentanyl in the crisis cannot be underestimated. Fentanyl is spreading throughout the black market as an adulterant or ingredient in counterfeit pills, cocaine, heroin and other illicit substances. The National Institute on Drug Abuse estimates there are 15 to 30 different fentanyl analogues circulating in the drug supply. Fentanyl is so potent it is usually shipped in such minute amounts that detecting them in vehicles, the mail, or FedEx and UPS shipments is close to impossible.

Online drug markets serve as middlemen who find customers for illicit manufacturers in China and distributors in Mexico and Canada. No cartels, street corner dealers, or vats of drugs being snuck across borders. Just high-speed Internet connections and cryptocurrencies. 

“This is what makes the opioid crisis so unique and dangerous,” Peter Vincent, who led international operations for Immigration and Customs Enforcement (ICE) during the Obama administration, told The New York Times. “Traditionally, law enforcement has focused on large quantities of drugs like marijuana and cocaine. But very small amounts of opioids can bring tremendous profits.”

In other words, we are fast approaching a point at which supply-side interventions will be virtually pointless. Back in the 19th century, we could control the supply of morphine. In the 20th century, we could, to some extent, control the supply of heroin. But in the 21st century, we can’t do the same for fentanyl and its chemical cousins.

Even if borders and ports are secured, fentanyl can be manufactured inside the U.S. And if the Postal Service and commercial couriers like FedEx are closely monitored and inspected, private networks and ad hoc distribution systems -- the modern equivalent of old bootlegging operations -- can move drugs around the country with ease.

Thus, a bill that would impose a national 3-day limit on opioid prescriptions for acute pain, as proposed by Sen. Robert Portman (R-Ohio), is off target. And efforts to combat the opioid crisis by using aromatherapy in ambulances are naive at best.

Instead, drug addiction treatment in the form of medication assisted therapy (MAT) needs to be available everywhere. Medications like methadone have existed for decades, but as David Courtwright notes in his book “Dark Paradise” on the history of opioids in America, methadone "never emerged as a coherent national response to heroin addiction.”

The national response is still not coherent. There is little interest in developing an infrastructure to treat people with substance use disorders or programs to reduce the risks of addiction. Instead we see a continuing, misguided focus on prescription opioids as both the cause and solution. Until that changes, the future of the crisis remains grim.

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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.