I Hate When Doctors Insist on Physical Therapy for Chronic Pain

By Crystal Lindell

There is definitely an over-prescription crisis in this country, but it’s not about pills – it’s physical therapy referrals. 

While many doctors see it as an “easy” way to reduce their opioid prescribing, the only thing easy about it is how easy it is for them to write the referral and then immediately blame the patient for any lack of progress. 

In fact, I recently stumbled onto a discussion about physical therapy in the “Family Medicine” subreddit, where medical professionals, who’ve confirmed their credentials, were discussing just how much they love to push PT on patients and why. 

In the thread, a poster who claims to be a new physical therapist asked providers when they typically will prescribe it. 

A nurse practitioner responded with, "I only prescribe PT on days that end with Y." 

A physician's assistant said they prescribe physical therapy "as soon as [patients] open the door."

A medical doctor lamented, "I wish my patients took [physical therapy] more seriously because recovery for a lot of [musculoskeletal] and chronic pain takes work and they want the one shot fix."

Ironically, it really seems that it’s the doctors who are looking for a one-shot fix with their physical therapy referrals. As another doctor on the thread admits, they prescribe PT "for any pain, gait, chronic respiratory, chronic pulmonary, or weakness complaints."

As a long-time pain patient, the thread confirmed everything I assumed doctors thought about pain patients and physical therapy. But unless you’re recovering from a specific injury, like a bone break or surgery, physical therapy can be a huge waste of time and money. 

For patients, the reality is that physical therapy is a massive time commitment and a huge financial expense.

Way back before I even developed intercostal neuralgia in my ribs, I started having pain in my wrists, likely caused by years of undiagnosed Ehlers Danlos syndrome and typing for a living. The official diagnosis for me at the time was “tendonitis.”

As someone who writes for work, dealing with sudden wrist pain was causing me massive issues. There were days when the pain was so intense that I couldn’t even type up a column.

I was also younger and more naïve then, so at the time my only goal was to do everything my doctor told me to do. I genuinely believed that that was my best chance at getting better, and that he had my best interest at heart. 

So when he told me to take Advil and go to physical therapy three times a week, I happily agreed.

The only issue was that I had to miss a ton of work, use a bunch of gas to get to the appointments, pay for parking, and then also come up with the $30-per-session co-pay, which added up to almost $100 a week! Times that by four weeks, and suddenly you’re looking at a car payment, easy.

God forbid, you have a job where you can’t get time off during the limited business hours offered by physical therapists. Plus, there’s the issue of finding a babysitter if you have kids.

Maybe that’s not a lot of money to doctors, but to many patients it’s enough to put you into crushing debt and maybe even lead to you losing your job for missing too much work.

The worst part was that physical therapy did almost nothing to relieve my pain. The appointments themselves mostly consisted of the therapist massaging my wrists, which only helped in the moment. In truth, the most effective part was the wrist braces they gave me to sleep in, something my primary care doctor could have easily given me himself.

Many doctors seem to think that if a patient is “really” in pain, they will try anything to get better. And thus, if a patient is reluctant to spend a bunch of time and money on physical therapy, then the only logical conclusion is that they must be a drug-seeking junkie looking to get high.

But there’s a reason that pain medication, especially opioids, are so popular. They are known to be immediately effective, and they are very cheap compared to physical therapy. Plus, instead of forcing you to miss work, they actually allow you to go to work despite the pain.

Looking back, I do not think that I needed opioid medication for my wrist pain, so I’m not arguing for that. I’m just saying that I also did not need physical therapy. But, like many of the doctors on that Reddit thread, my physician had gotten into the habit of prescribing PT for almost anything. 

Unfortunately, that would not be the last time a doctor tried to push physical therapy onto me. It happened to me and my loved ones many times over the years. While I have seen it work for family members who had just had a major operation or an acute injury, I have rarely seen it help much with chronic pain.

Of course, there are certainly patients who have benefited from it, and physical therapy should definitely be an “easy” option for them. Unfortunately, insurance coverage of PT is often limited. My fiancé can’t get insurance to cover any more physical therapy for him, despite the fact that he does find the sessions to be beneficial for his chronic pain.

In essence, doctors will happily prescribe physical therapy, but that’s about where their concern ends. After that, you need to figure out the health insurance requirements, assuming you even have insurance. Then you have to come up with co-pays, transportation, time off work, potential babysitters, and the energy to go to PT appointments while also maintaining the rest of your responsibilities. 

That last one is something doctors often fail to consider. If you’re working one or more jobs, running a household, and trying to get through the week, adding in the time and emotional energy to go to physical therapy a few times a week can be almost impossible.

In short, there’s a long list of negative side effects that come with physical therapy. They start with the referral by your doctor. Physical therapy should not be used by them as a secret test that patients have to pass just to prove they’re not trying to score some hydrocodone. It also shouldn’t be used as a first-line treatment for patients who may greatly benefit from other treatments.

There were a couple people on that Reddit thread attempting to stick up for patients. One doctor said this: 

"To be fair, it's financially out of reach for many (most of my) patients. My low income patients can get 4 visits/year but finding a PT who can provide the low income service can be challenging. These same patients are getting a maximum income support of $1787/month (a 700 square foot basement apartment rents for about $1500/mo right now in our city, if you can find one).

Sometimes people don't make bad choices, they fail to have good choices to make."

The only problem with that response is that it still assumes that physical therapy is a “good” choice. As a patient, I’m not convinced that it is. In fact, sometimes it’s a bad one. 

A Fentanyl Vaccine Is a Horrible Idea

By Crystal Lindell

A few years ago, I saved a loved one’s life when he was overdosing on fentanyl.

His lips and fingertips were blue when I found him, and as I administered NARCAN (naloxone), all I could think at that moment was that if he was dead, I never got the chance to say good-bye.

It was one of the most traumatizing experiences of my life, and I’m forever grateful that my efforts to save him were successful.

Even with that experience, I’m here to tell you that a fentanyl vaccine is an absolutely horrible idea. And I pray that nobody I love ever takes it – even the man who’s life I saved.

This week, JAMA published an article about the current status of the fentanyl vaccine, which is in development.

In the article, Associate Managing Editor Kate Schweitzer interviews Collin Gage, a cofounder and chief executive officer of ARMR Sciences, which has begun early-phase human trials of a fentanyl vaccine in the Netherlands.

Schweitzer seems to think such a vaccine would be a net positive for the world.

"If proven safe and effective, it could become the first proactive pharmaceutical approach designed to prevent fentanyl overdose and, potentially, treat addiction," she writes.

However, as both a chronic pain sufferer and someone whose loved one struggled with fentanyl addiction, I’m here to tell you that this entire research project should be ended right now.  

First and foremost, my biggest concern is that such a vaccine would be pushed onto people who do not want or need it, including pain patients.

I can already see doctors having a policy where they won’t prescribe opioids unless the patient agrees to receive the fentanyl vaccine. They’ll claim the policy is meant to protect patients, when in reality, it would only cause them more harm.

The article even points out what those harms could look like. Schweitzer quotes Kathryn Frietze, PhD, associate professor of molecular genetics and microbiology at the University of New Mexico, who is one of many researchers working to develop vaccines against drugs of abuse.

Doctors, according to Frietze, have expressed concern about how a vaccine could complicate medical care, given that prescription fentanyl is a widely used medication for acute pain control and anesthesia.

“Can they increase the fentanyl dose medically if needed, or is it going to completely eliminate fentanyl as an option?” Fritze asked. 

Read that again. Do we really want to eliminate fentanyl as an option for pain control and anesthesia? This is a medication used in hospitals, usually on patients in severe trauma or undergoing surgery.

Do we really want a vaccine to make fentanyl ineffective for them? 

Do we really want a vaccine that requires more fentanyl to be administered?

In practice, either scenario could be disastrous, especially in an emergency situation where an unconscious patient would be unable to explain to doctors that they had the fentanyl vaccine.

The thing about fentanyl is that you have no idea that you might need it someday. We don’t usually know when we’ll need anesthesia or acute pain control.

That is particularly relevant in this situation, because the article quotes multiple experts who seem excited about pushing a fentanyl vaccine onto high-risk groups, such as college students and young adults, who are experimenting with drugs. They may not be aware that the counterfeit pill they bought or got from a friend has a lethal dose of fentanyl. 

“Overdose from fentanyl doesn’t just happen to people who are purposely taking fentanyl,” Frietze said. “People may be exposed without their knowledge.” 

So they want to go to college campuses and give students a vaccine against a very valid pain medication, when they have no idea if they will ever need it?

Schweitzer says a vaccine that specifically targets fentanyl could still allow for the use of other analgesics, such as morphine and propofol. 

As a pain patient, I’m skeptical about that. If a vaccine blocks the effects of one opioid, it may also dampen the effects of other ones.  

The other major issue with a potential fentanyl vaccine is a phrase coined by Richard Cowan in 1986: “The Iron Law of Prohibition.” That essentially means that when law enforcement targets a specific drug, the potency of other prohibited substances increases.

Or, as Cowan said, "The harder the enforcement, the harder the drugs."

If you give everyone fentanyl vaccines, people will just find even stronger drugs to take. And those drugs will likely be more deadly. It’s no coincidence that illicit fentanyl arrived on the black market just as opioid pain medication became harder to get. 

As such, a fentanyl vaccine could result in more overdose deaths, not less, as people seek substitute drugs that bypass the vaccine.

Gage’s response to that possibility is to call the fentanyl vaccine “a platform technology—one that we plan to adapt."

In other words, they will just make new vaccines for new drugs. But in practice, how long would it take to actually develop new ones? And how long would it take to get them to drug users, who are often difficult for the medical community to reach?

Trust me when I tell you that drug users and their dealers will move exponentially faster than any research and development team ever could.

In practice, the reason street fentanyl is so deadly is because it’s unregulated. Users don’t know how much they are taking or what is mixed in with it – and those two things make it more likely that the drug will cause an overdose.

The solution then is to offer drug users a regulated supply, which is what methadone treatment is. In a perfect world, if they really wanted to help fentanyl users, these researchers would be working to make methadone treatment more accessible.

Instead, they’d rather make it so patients can’t use one of the most effective pain and anesthesia medications on the market, while pushing them onto harder or less effective drugs.

It’s a bad idea, and I hope these researchers see the error of their ways before it’s too late.

Tell Me Who the Real Criminals Are

By Cathy Kean 

Close your eyes. Go back to the worst pain you have ever known. A broken bone. A car wreck. Surgery. Childbirth without relief. Stay there for fifteen seconds. 

Feel the desperation. The begging. The need for it to stop.

Now imagine never leaving that place. You feel that pain every second. Every day. No break. Not in sleep. Not ever.

That is my life. Millions of us live here.

There is something that helps. Prescription opioids do not erase my pain, but they turn down the volume enough for me to be able to shower. To work. To keep my home. To hug my grand child without screaming inside.

Then they took them away. They said it was for my own good.

Before my chronic pain worsened after the release of the CDC opioid guideline, I worked as a real estate agent and special education advocate. 

Now I cannot walk. I have lost my job. My home of 32 years is in foreclosure. Friends stopped calling. I need help to use the bathroom. My independence is a corpse they are still kicking.

And the final cruelty? The people who did this lied to you.

CATHY KEAN

The Lies Behind the ‘Opioid Crisis’

You have been told prescription opioids are killing America. In 2021, the CDC reported a 1,040% increase in overdose deaths involving synthetic opioids from 2013 to 2019. They said those deaths were largely caused by illicitly manufactured fentanyl.

Here is what they didn’t tell you in that report: For many years, CDC misclassified most of those overdoses as prescription opioid deaths, and those deaths were used to help justify the agency’s 2016 opioid guideline, which led to wholesale restrictions on opioid prescribing. 

Not until 2018 was the error quietly acknowledged by four CDC researchers. And that tens of thousands of illicit fentanyl deaths were misclassified for years as prescription opioid deaths. 

The error was so serious that in 2016 alone, over 15,000 deaths caused by illicit fentanyl were mistakenly attributed to prescription opioids. Millions of Americans were misled by these and other errors that inflated the overdose numbers.

The White House told you prescription painkillers were the enemy. The media screamed it. Meanwhile, the real causes – illicit fentanyl, heroin and methadone – were hidden inside the CDC's overdose numbers.

The Death Toll They Won't Count

Because of the CDC guideline, thousands of chronic pain patients killed themselves. 

Not because they wanted to die, but because they could no longer get the prescription opioids that made life bearable. The pain became more than they could endure. And suicide offered a way out.

Others died slowly. From heart failure. Stroke. Organ collapse. The brutal physics of untreated pain grinding a body into dust.

No one in power keeps track of those deaths or says a word about them. No government agency. No major news outlet. No one with a microphone stands up and says, "We made a mistake. We are killing innocent people."

Instead, they push Suboxone and “alternative treatments.” For money. Not thy fellow man.

We have lost our First Amendment rights in the doctor's office. If you speak up about your pain, you are labeled a drug seeker and abandoned as a patient. I would rather die at home than face contempt again in the ER.

What I Want You to Do

Now imagine those 15 seconds of the worst pain you’ve ever felt. Really do them. Feel that pain.

Could you live like that? For one week? One year?

I am not asking for your pity. I am demanding your understanding. Your voice. Your outrage.

We are not criminals. We are not drug seekers. We are not addicts. We are not statistics on a CDC spreadsheet.

We are mothers and fathers. Veterans who served you. Construction workers who built your cities. Nurses who held your hand. Grandparents who babysat your children.

And we are dying. Some by suicide. And some by the slow, grinding destruction of our lives and bodies.

So here is what I need from you:

Do not look away. Say our names. Help us get our lives back.

Because if you could spend fifteen seconds in my body — really spent them — you would not need to be asked twice. You would be screaming with us.

Cathy Kean lives in California. She is a grandmother of 9 and mother of 4. Cathy lives with intractable pain from a botched surgery, along with fibromyalgia, arachnoiditis, stiff person syndrome, lupus, Parkinson's disease and insomnia. 

Cathy is the creator and administrator of the Facebook pages Chronic Illness Awareness and Advocacy Coalition and Pain is Pain. She writes to give a voice to the millions of chronic pain patients who have been silenced, stigmatized, and left to suffer—and to ensure her grandchildren never have to ask why Grandma couldn't be there. 

A Simple Chart Destroys a Myth About the Opioid Crisis

By Neen Monty

There’s a simple reason the narrative around the “opioid crisis” falls apart when you actually look at the overdose data.

Because the data doesn’t show what they claim it shows. 

And that false narrative has been retrofitted to cover the deception and lies wrought by bad actors in the U.S. healthcare system.

The chart below tracking overdose deaths by opioid type tells two stories:

1. Prescription opioid deaths rose, stabilized, and then fell.

2. Fentanyl arrived… and everything exploded.

Those are not the same curve. Those are not the same problem.

There are two epidemics. And one deliberately blurred narrative.

In the United States, prescription opioid deaths peaked around 2012, at about 5 deaths per 100,000 Americans. 

Meanwhile, fentanyl-related deaths – almost non-existent before 2012 – began rising exponentially as illicit fentanyl entered the black market.

In 2023, they peaked at 22.2 deaths per 100,000 people. By then, overdoses linked to prescription opioids had fallen to 3.8 deaths per 100,000.

That means there are almost 6 times the number of overdose deaths caused by illicit fentanyl than prescription opioids.

Yet prescription opioids remain the target.

That “opioid crisis” curve?

That’s illicit fentanyl. Not pain patients. Not prescription opioids. Not doctors treating disease.

The Uncomfortable Truth

When overdose deaths skyrocketed, prescription opioid deaths were already flattening out and falling. That should have changed the narrative right there.

But the narrative stayed the same.

The explosion in deaths aligns with one thing: iIlicit fentanyl and its analogues flooded the U.S. drug supply with counterfeit pills of unknown, often lethal, potency.

That is why deaths surged, not because someone with intractable rheumatoid arthritis got oxycodone prescribed for their pain.

The numbers don’t lie. If the opioid crisis were really about prescriptions, the lines on the chart would look very different.

So why didn’t the narrative charge?

Because blaming illicit fentanyl means:

• Confronting illicit drug supply chains

• Admitting policy failure

• Acknowledging complexity

Blaming prescriptions is easier. It creates easy villains to target:

• Doctors

• Patients

• Pain medication

And it opens the door to:

• Restrictions

• Guidelines

• “Education programs”

• Entire industries built on fear

Who paid the price?

Pain patients. People with cancer, autoimmune disease, neurological damage, and severe structural pathology.

People who were stable. Functioning. Living.

Until they were cut off.

This was never about prescriptions. The chart makes one thing brutally clear: The U.S. overdose crisis is a fentanyl crisis.

Everything else is a false narrative. A fairy story. One designed to vilify people who are already among the most vulnerable people in our communities – the ill, the disabled, people living with severe pain.

It’s important to note that by the time Physicians for Responsible Opioid Prescribing (PROP) was created in 2012, prescription opioid deaths had already stabilised and were falling.

PROP was instrumental in creating the CDC’s infamous 2016 opioid prescribing guidelines. But there was no need to restrict opioid prescribing. There was no need for forced tapers that lead to suicides and overdose deaths. There was no need for dose ceilings that meant people’s pain was no longer treated adequately.

There was also no need for the fabrication of “evidence” that does not stand up to even a little scrutiny. Just read the studies that the CDC guidelines are based on. They do not show what you have been told they show.

But no one actually reads the studies. No one examines the data. No one questions. Doctors just blindly follow the guidelines. It’s hard to blame them when they face prison time if they don’t.

It has been ten years since the forced tapers started in the U.S. Six years since Australia blindly copied this failed policy. No one in Australia bothered to read the research. Australia just copied the U.S. guideline and allowed politicians to decide who gets pain relief and who does not.

Australia could see the policy going horribly wrong in the U.S. Yet it implemented those same policies and tortured Australian chronic pain patients the same way. The same is true for Canada and the UK as well.

This should never have happened.

Patients on three continents have been abandoned, left to suffer in agony day after day. Given psychological therapies for physical disease and injury. And no one says a word. 

I have contacted many politicians, journalists, and senior public servants in Australia.  No one will take this on. No one will right this wrong.

And the media continues to push a false narrative about an opioid crisis that does not exist. But it gets clicks.

It may be futile, but my life and those of many others depend on access to safe and effective opioid therapy.

And so, I will continue to fight.

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. For more information on chronic pain, the science, the politics and the lived experience, go to Pain Patient Advocacy Australia. You can also subscribe to Neen’s free newsletter on Substack: “Arthritic Chick on Chronic Pain.”

What If Medical Marijuana Was Free?

By Pat Anson

Chronic pain patients in the U.S. who are curious about trying medical marijuana are often turned off by the cost. Depending on where they live and how much legal marijuana is taxed, an ounce of medium-quality cannabis costs about $250; a one-ounce tincture bottle can cost up to $80; and a package of edibles might range from $20 to as high as $60.

Consulting with a doctor and getting a prescription for medical marijuana costs $40 to $150, and getting a medical marijuana card from your state could be another $100.  

All of these are out-of-pocket expenses, since health insurers don’t cover cannabis, although that could be changing now that the DEA has reclassified medical marijuana as a Schedule 3 controlled substance, which allows for some medical use. That opens the door to insurance coverage, but private insurers, Medicare and Medicaid have yet to take that step. 

In short, medical marijuana is currently out of reach financially for many patients.

But imagine if it was free. Would pain sufferers benefit if the cost of cannabis was no longer an issue?

The short answer is yes, according to a small new study in the Cureus Journal of Medical Science.

Researchers at the University of Pennsylvania’s Perelman School of Medicine found 29 patients with long-term chronic pain who wanted to reduce their opioid use and try medical marijuana, but considered cost a “major barrier.” With advice from a medical cannabis pharmacist, patients selected from a variety of no-cost cannabis products and started on a personalized opioid tapering plan.

“To our knowledge, this is the first prospective study evaluating whether medical cannabis can be used as an alternative to opioids in patients with chronic pain for whom cost has been a primary barrier to access,” wrote lead author Franklin Caldera, DO, who specializes in Physical Medicine and Rehabilitation at Hospital of the University of Pennsylvania.

At the start of the study, the average daily dose of opioids for participants was 46.8 morphine milligram equivalents (MMEs). Most had been taking opioids for over a decade to treat chronic back pain caused by degenerative disc disease or lumbar radiculopathy.

After five weeks of daily medical marijuana use, the average pain score for patients fell from 7 (on the zero to 10 pain scale), to a little less than 6 – a 16% reduction. Participants also reported improvements in their physical functioning, fatigue, general health, social functioning, and emotional well-being.

Even more impressively, patients reduced their average daily opioid dose to 16.2 MME – a 65% reduction. Seven participants were able to completely discontinue opioid therapy. Researchers say the reductions were sustained after a five month follow-up period.

“The findings of this study add to the growing body of literature supporting the safety profile and potential therapeutic role of cannabis. These data may help inform future considerations regarding reclassification, which could reduce financial barriers to access and help destigmatize its use for pain management and other medical indications,” said Caldera. 

“When used under appropriate medical supervision, medical cannabis may represent an effective adjunctive strategy for reducing opioid use among patients receiving long-term opioid therapy.” 

An obvious weakness of the study is its small size. Participants also wanted to reduce or stop their opioid use, which may have influenced the results.

We know nothing about the dose or type of medical marijuana they consumed, since patients selected their own cannabis products, the dose, and frequency of use. Without a standardized dose and method of delivery, we don’t know whether vaping or smoking were more effective, or if tinctures provided better pain relief than edibles. That’s unfortunate.

Previous studies have found that medical cannabis can help reduce the use of opioids and other medications. A recent survey of over 3,500 cannabis users in Germany found that most were able to reduce their use of painkillers, sleep medications, anti-depressants and other prescription drugs once they started using medical cannabis.

A similar survey of medical cannabis users in Florida found that many who have chronic pain were able to reduce or stop their use of opioids. Patients also reported less pain, and better physical and social functioning.  

What Is the Worst Pain Imaginable?

By Dr. Forest Tennant

In the 1970’s, when I first started treating intractable pain, my first cases were the bone pain of metastatic cancer, usually melanoma, breast, or prostate cancer. In those days, chemotherapy and radiation were just hopeful treatments, so pain management with opioids was essential. 

Interestingly, a second group of patients that I treated had post-polio neuropathies – not unlike today’s neuropathies of HIV and Covid.

A third group had adhesive arachnoiditis (AA), which can be caused by the toxic dyes used in myelograms during epidural injections.

Clinically, the patients with AA had pain as severe as the bone cancer patients. This was a revolutionary finding since, in those days, metastatic bone cancer pain was believed to be the “worst” pain imaginable. Left untreated, persons afflicted with AA suffered the severest of pain, debilitation, wasting, a bed-bound state, and premature death.

Other pain conditions thought to be the “worst” include small fiber neuropathy, late-stage degenerative arthritis, Complex Regional Pain Syndrome (CRPS), trigeminal neuralgia, and Ehlers-Danlos Syndrome (EDS).

Today, most pain patients are dumped into a waste basket with only the diagnosis of “chronic pain” and given some assembly line symptomatic treatment.

Few pain clinics even attempt to determine the underlying cause of pain. Fibromyalgia is treated the same as AA or pudendal neuropathy. Dosages of opioids and other pain relievers are based on a pain scale, rather than a determination as to the underlying disease. 

This sorry state has led some doctors to believe they will be prosecuted if they prescribe even low potency Norco for AA or CRPS. Another unfortunate consequence is that many parties now automatically view a “pain patient” as an addict with opioid use disorder.

Why AA Is So Painful 

AA pain will occur when a spinal nerve is damaged and prohibits the normal flow of bioelectricity. Consequently, bioelectricity will accumulate around the nerve damage.

The cauda equina nerve roots are major carriers of bioelectricity. When they are damaged, clumped or scarred, there is substantial accumulation of bioelectricity and the pain is profound. 

To keep bioelectricity and pain under control in AA, one needs a combination of medical and physical measures to prevent bioelectricity from accumulating.

My latest book, “Building a Life With Adhesive Arachnoiditis and Stories of Hope,”  describes these new clinical protocols and measures for the treatment of AA. 

Patients, family members, and medical practitioners can all benefit from the book’s information on this rare disease. Included are chapters on medical management, pain control, restorative measures, physical therapies, and electromedical administration. 

Stories from patients are also included in the book, not only to recognize the survivorship of the patients, but to share the measures they took to “build a life” with adhesive arachnoiditis. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to his research bulletins here.   

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section. 

We Need To Talk About Suicide Risk From Untreated Chronic Pain

By Neen Monty

Doctors, policymakers, journalists, and pain experts endlessly warn about the risk of overdose from long term opioid therapy.

But almost nobody talks about the risk of suicide from untreated pain.

Why is this being ignored? Swept under the rug?

Refusing to treat severe pain is not a neutral decision. It is not “playing it safe.” It is not “erring on the side of caution.”

It is a clinical decision that elevates one small risk, while pretending the other barely exists. 

Even when that risk is significantly larger, and not even remotely comparable.

Let’s look at the actual numbers. The annual overdose death rate for chronic pain patients prescribed long-term opioid therapy is estimated at:

• 0.017% to 0.256% per year

• Around 0.014% annually at lower doses

• Roughly 0.25% annually at high doses (>100 MME/day)

• Roughtly 0.75% annually at very high doses (>200 MME/day)

Look at those numbers. Take them in. Understand how small that risk is.

And those numbers are from recent, large scale, well designed studies. That is what the evidence says. Not the rhetoric.

Yet overdose risk is the only risk anyone talks about. The risk used to justify forced tapers. The risk used to deny prescriptions. The risk used to terrify doctors into abandoning pain patients.

Now let’s compare it to the suicide risk associated with chronic pain.

Studies suggest:

• 5–14% of chronic pain patients attempt suicide

• Chronic pain patients have a suicide risk 2–3 times higher than the general population

• Around 9% of all suicides in the United States involve chronic pain

Take a good look.

It’s not 0.014 percent. Or 0.25 percent.

It’s five to fourteen percent.

Unlike the overdose rhetoric, this is not a theoretical or hypothetical “what if.”

And the suicide numbers are going up, as more and more people are force tapered off their opioid pain medications.

The cruel irony is that the pain management providers often treat opioid overdose as the worst possible outcome, while treating suicide is an unfortunate but unrelated side issue.

But uncontrolled pain is devastating. It destroys lives.

This is not hard to understand. Think about the worst pain you’ve ever experienced. Now, imagine it did not go away. Imagine you have to live with it every single day for the rest of your life. How long could you handle that?

Uncontrolled pain causes:

• hopelessness

• isolation

• sleep deprivation

• loss of identity

• financial collapse

• disability

• relationship breakdown

• depression

• fear of the future

And if a person expresses any of these fears, they are often deemed as “catastrophising.” The psychological harm caused by uncontrolled pain is substituted as the cause of that pain.

And patients get psychological treatment, when what they really need is pain relief.

They are not the same thing. You cannot switch cause and effect and expect a good outcome. You cannot make physical pain go away with psychological therapies. 

The best you can hope for is improved coping skills. But no one can cope with 8+ pain on a daily basis.

No one.

Not for very long, anyway. Not when you know that pain is never going away. How long could you cope with that?

Eventually, for some people, it causes the desire to escape. And there is only one way to escape, when doctors refuse to treat the pain.

Not because people living with severe, untreated pain are weak. Not because they are “catastrophising.” Not because they need a mindfulness workshop or some grounding.

Because severe, relentless pain changes human psychology.

That should not be hard to understand. If you put your hand on a hot stove, your nervous system screams at you to escape. Take your hand off the stove!

What exactly do people think happens when that signal never stops?

For years? Or decades?

I know that many clinicians choose to believe this kind of pain does not exist. That no one has pain that is a constant and severe 8+. 

That is not true. That’s what we call denial. And it does a lot of patient harm.

My pain is an 8+ every day, for much of the day. My pain is not amplified by psychological issues. My pain is purely physical. I have been in pain for 20 years. If you think I haven’t learned about pain and coping skills, then you are doing me a grave disservice.

And here is the part nobody wants to say out loud:

When a clinician refuses to adequately treat severe pain, they are making a risk calculation.

They are deciding that preventing a comparatively rare overdose death is more important than preventing the far more common risk of suicide.

It makes no sense, not logically, not medically.

But it is true.

Every medical decision involves risk trade-offs. Medicine is all about risks vs benefits.

We accept bleeding risks to prevent stroke. We accept infection risks during surgery. We accept chemotherapy toxicity to treat cancer.

But somehow, in pain medicine, only one risk counts: Overdose.

Nothing else matters. Everything else disappears. The suffering disappears. The suicide risk disappears. And the patient disappears.

But the pain does not disappear.

Even worse, pain patients are often blamed for the emotional consequences of living in agony.

If they become distressed, hopeless, fearful, withdrawn, anxious or depressed, that is now framed as a psychological problem, a mental illness that requires psychotherapy, rather than an understandable and normal response to relieve their physical suffering.

Imagine applying that logic anywhere else in medicine.

An amputee becomes depressed and hopeless because they can no longer walk.

Would we respond by saying: “Have you tried reframing your thoughts?”

Or would we offer them treatment? Prosthetics? A wheelchair? The ability to regain some of what they have lost?

A person loses their hearing, and becomes depressed and hopeless because they can no longer communicate.

Would we respond by saying: “Have you tried learning about how hearing works?”

Or would we teach them lip reading and sign language, and introduce them to the deaf community?

I could list a million examples. The point is, we should treat the problem. In no other forum do we withhold treatment and offer psychological therapies that are inappropriate and ineffective, rather than treat the actual pain.

None of this means that opioids are risk-free. They are not.

Opioids can absolutely cause harm, especially when combined with sedatives, are used recklessly, or prescribed without appropriate monitoring.

But pretending that untreated pain is safer than treating with opioids is not evidence-based medicine.

It is ideology.

And the people paying the price are patients trapped in severe pain with fewer and fewer options.

Medicine loves the phrase: “First, do no harm.”

But untreated and undertreated pain is doing harm.

Patient abandonment is harmful. Forcing people to suffer while congratulating yourself for reducing opioid prescribing is harmful.

Sometimes, it is simply choosing a different kind of death for your patient. 

An earlier death.

One that happens quieter.

One that is easier to ignore.

One that can be separated from lack of treatment.

One that can be attributed to poor mental health, instead of pain.

One that leaves no scandalous headline.

One that policymakers do not have to feel responsible for.

Perhaps that is the real issue. Overdose deaths are visible, while pain patients are invisible.

So only one becomes politically inconvenient.

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. For more information on chronic pain, the science, the politics and the lived experience, got to Pain Patient Advocacy Australia. You can also subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

CYP2D6: The Enzyme That Determines How Effective an Opioid Is

By Dipa Kamdar

For a medicine so commonly found in bathroom cabinets and high street pharmacies, codeine has a surprisingly complicated story. It sits at the intersection of pain relief, genetics, public health and regulation. 

As the UK and other countries continue to tighten rules around opioid use, codeine offers a useful case study in how a drug can be both helpful and potentially harmful, depending on who takes it and how it is used.

Codeine is an opioid used to treat mild to moderate pain. In some formulations, it is also used to suppress coughing. Over-the-counter products typically combine it with paracetamol, as in co-codamol, or ibuprofen, while stronger doses are available only on prescription.

Codeine itself is a weak opioid. Its analgesic effect is about one tenth that of morphine. Once swallowed, it is metabolised by enzymes in the liver, with some of it converted into morphine. That morphine then produces pain relief by acting on opioid receptors in the brain. 

For most people, the body makes enough morphine to ease symptoms. For others, the same dose can be ineffective or unexpectedly strong.

Fast vs Poor Metabolisers

One of the most striking features of codeine is how differently people process it. The enzyme mainly responsible for converting codeine into morphine, CYP2D6, varies significantly between people. Most metabolise codeine at an expected rate, but some carry genetic variants that alter the process.

A small proportion of the population are ultra-rapid metabolisers, thought to make up around 1% to 2% of people. They convert codeine into morphine much faster than average. 

This trait is more common among people of North African and Middle Eastern backgrounds, for whom even standard doses can produce unexpectedly high morphine levels, increasing the risk of severe drowsiness, breathing difficulties and other serious side effects.

Around 2% to 11% of people are intermediate metabolisers. Their CYP2D6 enzyme works more slowly or less effectively, so codeine may provide only limited benefit.

At the other end of the spectrum are poor metabolisers, estimated to make up 5% to 10% of the population. They convert very little codeine into morphine, so the drug may offer little or no pain relief. 

Poor metabolism is more common in people of white European descent. In these cases, it may make more sense to prescribe a different painkiller rather than rely on a drug the body cannot use efficiently. This wide variation makes codeine far less predictable than many people assume.

The Trouble With Codeine

That unpredictability matters because low-dose codeine does not always offer much in return. Research suggests that many over-the-counter codeine products provide little proven benefit for pain relief, particularly at doses below 10mg, while still carrying the risk of side effects. 

A review found that low-dose codeine combinations gave only modest relief for short-term pain, such as dental pain, episiotomy pain or pain after minor surgery, and many of the underlying trials were small.

By contrast, combinations such as ibuprofen 400mg with higher-dose codeine, between 25mg and 60mg, appear to provide more reliable relief. Even so, studies suggest that simple combinations such as paracetamol plus ibuprofen can match or outperform low-dose codeine products without the risks associated with opioids.

Common side effects include constipation, nausea, dizziness and drowsiness. At higher doses, codeine can slow breathing and impair coordination. It can also interact with other medicines that cause sedation, including some antiepileptic drugs. Certain antidepressants can block the enzyme that converts codeine into morphine, making it less effective.

Like other opioids, codeine can also become less effective with repeated use. This process, known as tolerance, happens when the brain’s opioid receptors adapt to the drug. People may then need higher doses to achieve the same effect. Even when taken as directed, tolerance can develop within days, and as doses rise, so does the risk of physical dependence.

Stopping suddenly after regular use can trigger withdrawal symptoms such as restlessness, sweating, anxiety and poor sleep. This is why health professionals advise using codeine for the shortest possible time and tapering the dose if it has been taken for longer periods.

Concerns about misuse, addiction and accidental harm have prompted tighter regulation in the UK. The Medicines and Healthcare products Regulatory Agency has introduced clearer warnings on packaging about addiction risk and limited over-the-counter pack sizes to a maximum of 32 tablets or capsules. Non-prescription codeine-containing products are now intended for use for no more than three days. Stronger codeine tablets, including 30mg formulations, have long been prescription-only.

Some products have faced even stricter controls. Codeine linctus, once widely used as a cough suppressant, was reclassified as prescription-only in 2023 because of growing concerns about misuse and diversion. 

It has been used in “purple drank”, a recreational mixture of codeine cough syrup with soft drinks and sometimes alcohol. Its opioid effects can lead to dependence, breathing difficulties and overdose, especially when combined with other sedatives.

Codeine remains a useful option for short-term pain when other medicines are unsuitable or insufficient. But its effectiveness, safety and potential for dependence vary far more than many people realise.

In a landscape where medicines are often judged by how familiar they feel, codeine is a reminder that common does not always mean simple. Used carefully, it can help. Used carelessly, it can cause problems that last long after the pain itself has passed.

Dipa Kamdar is a Senior Lecturer in Pharmacy Practice at Kingston University.

This article originally appeared in The Conversation and is republished with permission. 

Many Rx Opioids – Not Just Suboxone – Raise Risk of Dental Disease

By Pat Anson

Suboxone isn’t the only opioid medication linked with dental decay and disease.

A large study led by VA Connecticut researchers found that patients on long-term opioid therapy with pain medications such as morphine and oxycodone have a significantly higher risk of infection-related dental disease.

The observational study included data from over 2 million U.S. veterans, 36% of whom were on long-term opioid therapy (LTOT). Those taking opioid pain medication for at least 90 days had a 24% higher chance of tooth decay, infections or tooth loss. 

Suboxone, which contains the partial opioid agonist buprenorphine, was excluded from the study, along with the opioid methadone. Both medications are used to treat opioid use disorder (OUD). 

The FDA warned in 2002 that buprenorphine tablets and film, when dissolved in the mouth, were linked to serious dental problems, including tooth decay, cavities, oral infections, and loss of teeth. Methadone has also been associated with dental problems because it induces dry mouth (xerostomia), which reduces saliva needed to wash away bacteria and plaque.  

The new study is believed to be the first linking dental disease to opioids taken long-term for pain relief.

“To our knowledge, this is the first study to demonstrate the association between LTOT exposure and dental disease. This finding is important in light of recent warnings of buprenorphine risks that may influence decision-making in the context of chronic pain and/or OUD,” researchers reported in the journal PLOS One.

In their analysis, VA researchers compared veterans who took 12 opioids (hydrocodone, oxycodone, morphine, fentanyl, hydromorphone, dihydrocodeine, meperidine, pentazocine, propoxyphene, levorphanol, tramadol, or tapentadol) to veterans who had no exposure to LTOT in the prior year.

Researchers think the higher rate of dental disease for those on LTOT stems from immune suppression and reduced saliva flow, which raises the risk of bacterial infections that lead to dental disease and cavities. 

The findings suggest that all patients on LTOT – whether for pain relief or OUD treatment – should be cautioned about the risks of dental problems.

“Concern over these risks may present a barrier to buprenorphine initiation in patients prescribed LTOT for whom such treatment is indicated. However, full opioid agonists themselves may pose oral health risks due to immunosuppression and well-documented effects on saliva flow causing xerostomia; both create opportunity for oral disease development,” researchers concluded.

Doctors who have patients on LTOT are advised to monitor their oral health and to have discussions with patients about dental risks before starting them on opioids.

There are simple steps patients on long-term opioids can take to reduce their risk of dental disease. Patients on buprenorphine or methadone are often advised to drink more water to combat dry mouth, and to brush and floss regularly to help prevent dental infections. 

The Fake Excuses Pharmacists Use to Avoid Filling Opioid Prescriptions

By Crystal Lindell

I still remember the first time a pharmacist lied to me about why they couldn’t fill my opioid prescription.

I went in to pick up my regularly scheduled morphine refill, and when I got to the counter, she told me that my insurance wouldn’t cover two prescription refills within the same calendar month. She claimed that the rule applied even if the refills were 30 days apart due to a month having 31 days. And, since the insurance wouldn’t cover it, they weren’t filling it.

At the time, it didn’t even occur to me that a pharmacist would blatantly lie to me about something like that. So I immediately walked away from the counter and pulled out my cell phone to call my insurance company.

I’m not going to lie, I had a whole rant ready to spew at them about this nonsensical rule.

As it turned out, my frustration was misplaced, because no such nonsensical rule existed. In fact, the representative told me no one from the pharmacy had attempted to even put the prescription through. If they had, the insurance company would have covered it.

When I went back to the pharmacy counter and relayed this information, the pharmacist shrugged and said it must have been a mistake. Then, she filled my prescription – which was indeed covered by insurance.  

It wouldn’t be the last time I would have to deal with a lying pharmacist.

Over the years I’ve realized that it’s common for pharmacists to throw up false hurdles when patients try to fill any type of controlled substance script. This includes opioids, but also stimulants like those prescribed for ADHD.

I’ve seen it happen many times to myself and loved ones. Their excuses seem to fall into three broad categories.

Claim #1: Insurance won’t cover the medication

This ties into my opening story here, but it’s also happened to me and my loved ones a number of other times.

For example, after my mom had a hip replacement surgery, the pharmacist tried to tell her that her insurance would only cover a specific number of pills, so they did not fill for the entire amount. My mom was too out of it to argue with them and just accepted the smaller amount – which is what the pharmacist was likely hoping would happen.

A related claim here is that the pharmacy can’t take cash payment for a controlled substance in cases where insurance is refusing to cover it. They never even offer the option in this circumstance, despite the fact that generic pain medications are relatively cheap, and many patients would be happy to pay cash if it meant getting their meds.

I can only speak to Illinois, but as someone who’s been living without health insurance since 2022, I can confirm that pharmacies here can definitely take cash for a controlled substance.

Claim #2: The pharmacy never received the prescription from your doctor

Just last week, one of my loved ones called his pharmacy when his pain medication was due to be refilled and the staff told him that they had not received the prescription. He asked them to check different computer files to see if they were missing it, because he was sure his doctor had sent it in.

The pharmacy staff insisted that they had not received it. It was a Saturday, so he was unable to get a hold of his doctor.

He called back on Sunday morning and they again claimed they had not received the prescription, but after he pushed them to look for it in different places they suddenly found it.

When he finally got the bottle, it said the prescription had been dated for that Saturday, meaning they had definitely lied about not receiving it the day before.  

Claim #3: The medication is completely out of stock

This is one that’s difficult to prove, but it happens so frequently that I have to assume that at least some of the time pharmacists are lying about being out of a medication. It’s an excuse they can give to avoid filling a prescription. 

Even if they aren’t lying about it, there’s nothing the patient can do to prove it. Opioids at many pharmacy chains are essentially being rationed due to opioid litigation settlements.

Beyond the direct lies, pharmacists use other tactics to make getting refills more uncomfortable and difficult. I assume that their hope is that it will deter patients from coming back.

For example, my current pharmacist will sometimes decide that he needs to discuss my opioid usage with me, and have a talk with me encouraging me to lower the dosage. It’s always an awkward and unwelcome conversation, and just the possibility of it happening makes me dread going in there every month.

My pharmacist has also tried to tell me that I needed a Narcan prescription to get another refill. The problem is I would have to pay cash for it, because I don’t currently have insurance. Thankfully, I convinced him that I already had Narcan at home – which was true. But I could see other patients giving up and leaving without their refill.  

The thought process among pharmacists seems to be that if they give pain patients enough hurdles to jump before they can get their opioid prescriptions, that some will just give up. That keeps more opioids out of patients’ hands.

I think pharmacists underestimate how much harm they cause when they straight up lie to patients. They see what they’re doing as protecting people from the supposed harms of opioids. But what they’re actually doing is eroding patient trust in them and medical professionals in general.

When pharmacists lie about being unable to fill prescriptions, it makes me wonder what else they are lying about. And it’s not a far leap to start questioning other medical information they provide.

I’m not sure what the solution is to all of this, other than to call out the behavior and to make more patients aware that it could be happening to them. People should know that they aren’t crazy, and that it’s okay to push back if you think the pharmacy is lying.

Maybe one day there will be more regulations in place to protect patients from being lied to by pharmacists. Or maybe pharmacists will be replaced by artificial intelligence programs – which may come with brand new problems that we haven’t even considered yet. 

Until then, my hope for you is that the next time you need to get a controlled substance prescription filled, the whole process goes so smoothly that it’s ready for pick up before you even get to the pharmacy.

Combining Opioids With a Cannabis-Based Medicine Doesn’t Add to Pain Relief

By Pat Anson

Combining a low dose of opioids with a cannabis-based medicine did not improve acute pain for people with arthritis, according to results of a small clinical study published in the journal Anesthesiology.

Animal studies have suggested that the two drugs might have a synergistic effect and provide better pain relief, but the study of 21 people with knee osteoarthritis found no added benefit. 

“Some patients believe combining cannabis with opioids can help with pain, and clinicians may recommend or prescribe it in states where cannabis is legal,” said lead author Katrina Hamilton, PhD, a Psychiatry Professor at Johns Hopkins School of Medicine. “Our study suggests that isn’t the case and patients may experience more side effects when the drugs are combined.”

There are some important caveats to the study that diminish its findings.

One is the design of the study and its small size – just 21 patients – who received placebo pills, hydromorphone alone, dronabinol alone, and a combination of hydromorphone and dronabinol. 

Participants received all four combinations prior to having pain induced by sticking their hands in cold water or having their skin rubbed with a “hot” capsaicin cream. That means the researchers were evaluating acute pain induced in a laboratory, not the chronic pain caused by arthritis.

Second, dronabinol (Marinol) is not cannabis. Dronabinol is a synthetic version of THC, the active ingredient in cannabis. It is FDA-approved to treat nausea and vomiting in chemotherapy patients, and to improve appetite in AIDS patients. Dronabinol was never intended to provide pain relief and has little in common with the various forms of cannabis (edibles, smoking, vaping) used in the real world. 

Third, while hydromorphone is a potent opioid, the oral dose (2 mg) that was used is relatively low – about 10 morphine milligram equivalents (MME). The research team had previously conducted a similar study using 4mg of hydromorphone. That also produced little pain relief for participants, so it’s not surprising that 2mg didn’t help either, although researchers say the lower dose has a “better safety profile.” 

The researchers found that taking hydromorphone and dronabinol, either alone or in combination, did not provide significant relief from acute pain. The opioid alone reduced pain sensitivity, while dronabinol did not, but neither meaningfully reduced participants’ self-reported pain.

When the two drugs were combined, side effects such as drowsiness, dizziness and impaired thinking were stronger and more noticeable, but without added pain relief.

“Opioid and cannabinoid medications failed to produce robust analgesia in experimentally induced pain among patients with knee osteoarthritis. In contrast to preclinical studies, there was no evidence of synergistic analgesic effects by combining hydromorphone and dronabinol,” researchers concluded.

While the dose of hydromorphone was low, the 10mg dose of dronabinol that was used in the study is a hefty amount. Interestingly, participants reported more of a “high” sensation from the dronabinol than from hydromorphone. But again, dronabinol is a synthetic version of cannabis and has little in common with what most cannabis consumers use.    

“In the real world, people often use cannabis differently, including lower starting doses, using gradually stronger doses, which may affect both benefits and side effects,” said Hamilton, acknowledging the limits of her study. “More research is needed to better understand how cannabis affects pain when used in real-world settings.”

Medical Cannabis Significantly Reduced Use of Opioids and Other Rx Drugs

By Pat Anson 

A new survey of cannabis users in Germany found a significant reduction in their use of painkillers, sleep medications, anti-depressants and other prescription drugs after starting medical cannabis treatment.

Over 3,500 cannabis patients participated in the online survey, published by Bloomwell, which found an average 84.5% decrease in the use of medications overall. Over half of respondents (58.9%) said they stopped taking at least one medication completely.

The reduced consumption of prescription drugs led to a corresponding change in side effects. Over 60% of patients said they no longer had any medication-related side effects, while nearly 38% said their side effects were reduced. 

Less than 2% said their side effects remained the same or intensified after they started using medical cannabis.

“Cannabis is often portrayed as dangerous and addictive, even though the most severe side effects and addiction potential have only been proven with other prescription medications,” said Julian Wichmann, MD, co-founder and CEO of Bloomwell, one of the leading providers of medical cannabis in Europe.

The reduced use of prescription drugs was associated with major improvements in quality of life and productivity. Most patients reported better concentration (67.8%), more social interactions (61.9%), and fewer days of missed work (53.9%) after they started using medical cannabis.

“Patients benefit significantly when they are able to replace other prescription drugs with medical cannabis. The often completely absent side effects are also associated with a marked improvement in quality of life and work performance. This is likely the most important finding of our survey,” said Wichmann.

The steepest reduction in the use of a prescription drug class was for sleep medications; 93.6% were able to reduce their use of sleeping pills by at least half, and 75.5% were able to discontinue them completely. 

Patients who took the stimulant methylphenidate (Ritalin) reported an average reduction of 88.4% after starting medical cannabis, while 77.3% were able to discontinue it completely. 

Patients were able to reduce their use of opioids by an average of 83.9%, while 61% were able to completely discontinue opioids.

That finding mirrors those of other studies in the US and UK. 

A large 2022 survey of medical cannabis users in Florida found that those who have chronic pain were able to reduce or even stop their use of opioids. Patients reported less pain and better physical and social functioning once they started using medical cannabis. 

A recent survey of UK adults prescribed medical cannabis for anxiety, depression, insomnia, PTSD and other mental health conditions found that 97% said it improved their well-being and happiness, while 68% said it enabled them to work.

Germany first legalized medical cannabis in 2017, allowing patients with certain medical conditions to access it with a prescription. In 2024, the German Narcotics Act declassified cannabis as a narcotic and allowed adults to possess and cultivate limited amounts for recreational use.

According to Bloomwell, cannabis reforms in Germany have led to significant reductions in the price of cannabis flowers and an increase in cannabis prescriptions.  

Vertanical, a German pharmaceutical company, hopes to soon get regulatory approval in Europe and the UK for the first cannabis-based medicine for chronic pain. In clinical trials, the full spectrum cannabis extract provided better pain relief for low back pain in a head-to-head comparison with low doses of opioids.

Doctors More Likely to Use Negative Terms for Sickle Cell Patients

By Crystal Lindell

Sickle cell patients are more likely than other patients to have negative descriptions in their medical charts, such as “noncompliant” and “noncooperative,” according to a new study published in JAMA Network Open.

The results are concerning because prior research has shown that such descriptors make doctors less likely to aggressively treat pain, a common symptom of sickle cell disease. The genetic disorder causes red blood cells to form in a crescent or sickle shape, which creates painful blockages in blood vessels. About 100,000 Americans have sickle cell disease, primarily people of African or Hispanic descent.

Researchers at the University of Chicago used artificial intelligence to analyze electronic health records and clinician notes for over 18,000 adult patients. They looked for seven negative words in patient charts: aggressive, agitated, angry, nonadherent, noncompliant, noncooperative, and refuse.

The descriptive words for sickle cell patients were then compared to those of four other groups without sickle cell disease: Black patients, patients diagnosed with chronic pain, patients diagnosed with opioid use disorder (OUD), and non-Black patients. 

They found that patients with sickle cell disease had higher odds of having negative descriptions than Black patients, non-Black patients and patients with chronic pain, but had similar odds of negative descriptors as patients with opioid use disorder. Non-Black patients had the fewest negative descriptors than the other patient groups.

Black patients with sickle cell disease, chronic pain, and OUD had the highest frequency (19%) of negative descriptors in their medical notes.

The researchers said their findings suggest there is bias against patients with sickle cell disease, particularly when opioids are involved.

“Although patients with sickle cell disease routinely use opioid medications to manage their chronic pain, the vast majority do not have an opioid use disorder,”  said senior author Monica Peek, MD, a Professor for Health Justice at University of Chicago Medicine. 

“It is a testament to the strength of their character that they do their best to live full lives while managing debilitating pain with the minimum amount of medication. And yet, within health professions and society as a whole, there is a persistent bias that stereotypes these patients primarily as ‘drug-seekers’ rather than regular people managing a chronic disease.”

The bias and stigma have real life consequences: If a doctor or nurse sees negative descriptors in a patient’s chart, they are less likely to effectively treat their pain.

When it comes to terms like “noncompliant,” the issue can be a bit of a chicken-egg situation — it’s difficult to know what came first. 

Prior research has shown that patients with sickle cell disease who experience discrimination in health care are less likely to follow physician recommendations. These same patients may then be labeled as “noncompliant,” which could perpetuate discriminatory behavior against them. 

The researchers said that clinicians should work to understand why a patient may not want to take a medication or has trouble adhering to treatment, and then adjust their treatment plan to support the patients from there. And they should avoid using negative terms in patient charts.

Researchers Say Opioid Risk Tool Has ‘Too Many False Alarms’

By Pat Anson

The use of artificial intelligence (AI) continues to grow in healthcare, with patient health data and behavior increasingly being used to assess whether a patient is at risk of an illness or chronic health condition.

NarxCare and Epic, for example, scan electronic health records and prescription drug databases to create Opioid Risk Scores (ORS) for patients, which are then shared with healthcare providers to flag patients at risk of opioid misuse or an overdose. Patients deemed to be at high risk may not be able to get a prescription for opioids or they may be abandoned as “too risky.”

But a new study – the first of its kind – suggests that using opioid risk scores to predict patient outcomes is flawed, with unacceptably high rates of false positives.   

The study, recently published in the Journal of General Internal Medicine, looked at Epic’s opioid risk scores for over 700,000 U.S. patients being treated by primary care providers. The vast majority of patients (99.6%) were classified as low risk, with only 0.4% considered at high risk of an overdose or OUD.

It’s reassuring to see so many patients deemed low risk. But how accurate is the risk score in predicting patient outcomes? 

Of the 702,099 patients deemed low risk, only 2,177 went on to have an overdose or OUD diagnosis within the next 12 months. That means the system correctly predicted outcomes 99.7% of the time.

Conversely, of the 2,665 patients deemed high risk, only 185 later had an overdose or OUD diagnosis. That means Epic’s scoring system correctly predicted outcomes only about 7% of the time. 

Researchers say the false positive rate of 92.2% in the high risk category means that Epic’s ORS “produces too many false alarms” and is of little value to providers.  

“In this study, most high-risk patients were false positives, and most who developed OUD or overdosed were false negatives. Because these outcomes are rare, achieving adequate PPV (the proportion of cases that are accurate) is challenging. The ORS’s misclassification could undermine its external validity, leading to misallocated resources and missed interventions,” wrote lead author Stephanie Hooker, PhD, a Research Investigator at HealthPartners Institute.

“Missed interventions” in this case could mean a patient being denied opioid medication or being referred to addiction treatment, when neither move is justified.

On the flip side, Epic’s 99.7% success rate in identifying low risk patients also isn’t foolproof. 

Of the 2,362 patients who experienced an overdose or OUD diagnosis, Epic’s system flagged only 185 of them as high risk — which suggests that over two thousand were incorrectly labeled as “low risk.”

Maybe the lesson here is that “low risk” doesn’t mean no risk, and “high risk” doesn’t provide any certainty either.  

Pain management expert Dr. Lynn Webster says no opioid risk score — whether Epic’s or NarxCare’s – should be viewed as authoritative by doctors and pharmacists in making clinical decisions.     

“Both tools can be harmful if used punitively. The NarxCare scores have shown that overestimated risk may lead to forced tapering, abandonment, or other punitive responses, which could paradoxically increase overdose risk. With Epic, the harm is a bit different: the score can both stigmatize flagged patients and falsely reassure clinicians about the much larger group labeled low risk,” said Webster, a Senior Fellow at the Center for U.S. Policy (CUSP).

In 2023, CUSP petitioned the FDA to take Narxcare’s ORS software off the market as an unproven and misbranded medical device. The FDA rejected the petition on procedural grounds. 

In the case of Epic’s ORS, Webster says it is a mistake to count OUDs and overdoses in the same prediction model because they are distinct events. Someone can overdose without having OUD, while someone can have OUD without ever experiencing an overdose.   

“Opioid risk tools will always struggle to predict overdose death risk because overdoses can occur in patients who have no opioid use disorder and no aberrant drug-related behavior,” Webster told PNN. “Some patients overdose even when they take their medications exactly as prescribed. Overdose can also occur because of comorbid medical conditions or other factors unrelated to OUD.”

As flawed as they might be, Epic and NarxCare are already embedded in the U.S. healthcare system. Data on over 190 million patients has been collected by Epic’s MyChart software, while NarxCare is used by Walmart, Rite Aid, CVS and other major pharmacy chains to analyze patient risk.

“Whether the score comes from NarxCare or Epic, the core danger is the same: once a proprietary risk label is embedded in the chart, it can take on a false authority that changes how patients are treated,” says Webster.

Co-Prescribing of Opioids and Gabapentinoids Grows Despite Warnings

By Pat Anson

In 2019, the FDA warned that serious breathing problems can occur in patients who take gabapentinoids with opioids or other medications that suppress the central nervous system. The agency said elderly patients and those with pre-existing lung problems were at highest risk of respiratory depression, which can lead to a fatal overdose.

Those warnings went unheeded by many doctors, according to a new study that found the co-prescribing of gabapentinoids to patients on long-term opioid therapy increased over the past decade, rising from 47% in 2015 to 58.7% in 2023.

Gabapentinoids are a class of nerve medication originally developed to prevent seizures, but are widely prescribed off-label to treat pain. They include gabapentin (Neurontin) and pregabalin (Lyrica), as well as generic versions of the drugs.

Not only did co-prescribing with gabapentinoids increase, but the age of patients on long-term opioids also rose, from 52.5 years in 2015 to 60.5 in 2023. Nearly half of those patients (48.7%) are on Medicare. 

“Because older adults are at higher risk of adverse events from polypharmacy, the increased rates of coprescribing, particularly with gabapentinoids, raises additional safety concerns,”  said Thuy Nguyen, PhD, Assistant Professor of Health Management and Policy at the University of Michigan’s School of Public Health.

Nguyen and her colleagues' findings, published in a JAMA research letter, also document a steady decline in long-term opioid use, which coincides with federal and state guidelines that were imposed to limit opioid prescriptions.  

Between 2015 and 2023, the number of U.S. patients on long-term opioid therapy for at least 90 days fell from 5.6 million to about 4.2 million — a 24.3% decrease. 

At the same time, the average daily dose of opioids also declined, from 47.9 morphine milligram equivalents (MME) in 2015 to 38.6 MME in 2023 – which is in line with CDC guidelines that recommend caution when doses exceed 50 MME.

Researchers think more work is needed to reduce opioid use and to find alternative ways to relieve pain.

“With almost 5 million Americans on long-term prescription opioids for chronic pain, and likely millions more who are taking shorter courses of prescription opioids for acute pain, most clinicians are likely to care for someone using prescription opioids for pain, highlighting the pressing importance for investing in better treatment models for pain,” said senior author Pooja Lagisetty, MD, Associate Professor of Internal Medicine at the University of Michigan Medical School.

In addition to gabapentinoids, researchers tracked overlapping prescriptions for other controlled substances. They found that co-prescribing of long-term opioids with benzodiazepines declined from 43.8% in 2015 to 33.5% in 2023; while co-prescribing for stimulants rose from 5.9% to 6.7%.

In short, polypharmacy is relatively common with patients on long-term opioids, despite the known risks of combining certain drugs. 

Common side effects from gabapentin include brain fog, dizziness, weight gain, headache, fatigue, and anxiety. The drug has also been linked to a higher risk of dementia.

Those side effects may lead to a “prescribing cascade,” in which doctors mistakenly prescribe unnecessary medications to patients that cause even more side effects – never suspecting that gabapentin was the cause and they should consider discontinuing the drug.

In 2024, gabapentin was the fifth most prescribed drug in the U.S., with prescriptions nearly tripling since 2010. The number of patients prescribed gabapentin reached 15.5 million in 2024.

The off-label prescribing of gabapentin is legal and, in some cases, appropriate. But it has reached extreme levels, with studies estimating gabapentin is prescribed off-label up to 95% of the time.