Are 1 in 10 Americans Really Using Illicit Opioids?

By Crystal Lindell

A new study claims to have found that nearly 11% of Americans reported using illicit opioids in 2024, with 7.5% of them using illicit fentanyl.

It's a startling claim, in large part because those numbers are significantly higher than what's been reported in previous research. When the National Survey on Drug Use and Health asked about illicit fentanyl use in 2022, they found that just 0.3% of American adults used it in the past year

The study by researchers at the RAND corporation and USC led to a number of splashy headlines, including one in U.S. News and World Report reading: "U.S. Illicit Opioid Use Could Be 20 Times Higher Than Previously Estimated"

That is indeed a pretty striking claim – which is a large reason I am so skeptical of the research.

How did the study authors arrive at those figures? They developed and fielded a survey with Respondi, an online platform often used in academic research. So essentially, they did an online survey of 1,515 adults.

Participants were asked about their use of nonprescription opioids within the past 12 months, with heroin and illicitly manufactured fentanyl given as examples.

Among the respondents, they found that 166 (10.96%) reported illicit opioid use and 114 (7.5%) said they used illicit fentanyl. 

While I understand that population data is often collected with a relatively small sample size, it feels rushed to claim that 7.5% of adults used illicit fentanyl based on responses from 114 people in an online survey.

It feels equally rushed to claim that because 166 people reported illicit opioid use, that must mean that 11% of the population did so. 

There are about 262 million adults in the United States. If those survey numbers are accurate, that would mean 19.7 million Americans are using illicit fentanyl. And 28.8 million are using illicit opioids. That’s a lot of people. 

Overdose Deaths Declining

Keep in mind that the CDC just reported that U.S. overdose deaths fell by nearly 27% in 2024, the largest annual decline since they started tracking overdoses 45 years ago. 

Of the 80,391 drug deaths reported in 2024, the CDC estimates that 48,422 of those deaths involved synthetic opioids, primarily fentanyl. That’s nearly 28,000 fewer fentanyl deaths than the year before.

How can fentanyl deaths be declining when so many Americans claim they used the potent and often deadly street drug?     

The numbers just don’t add up. They suggest that illicit fentanyl isn’t nearly as dangerous as we’ve been led to believe, although I doubt that that’s the point the study authors were hoping to make. 

The RAND and USC researchers say their findings add to evidence that the CDC may significantly underestimate illicit drug use and that new methods are necessary to keep better track of them.  

“Estimates of illicit opioid use are rare and typically are available only years after the information is collected, limiting our ability to monitor trends on a near-term basis,” says lead author David Powell, PhD, a senior economist and Professor of Policy Analysis at RAND. “Our study offers a method to quickly and repeatedly monitor illicit opioid prevalence at low cost.”

All of this matters because studies like this are often used to punish people who use any opioids – both legal and illegal. 

For example, if 11% of the population truly is using illicit opioids, then the medical community may use that statistic to claim that opioid prescribing is still too high and that too many prescription opioids are finding their way onto the black market. 

They might also claim more public funding is needed for the addiction treatment industry. Or that the overdose reversal drug naloxone should be required for anyone getting an opioid prescription. 

There’s also the prevailing myth that prescription opioids are what lead people to use fentanyl and other street drugs, a claim that the RAND/USC researchers believe is true.

“As the opioid crisis has evolved, attention to the role of prescription opioids has waned, even though overdose deaths from prescription opioids remain high and prescription opioids may operate as critical pathways to illicit opioid use,” they reported.  

That’s why it is so important for researchers to be more cautious in how they frame their results, and it’s also important for the media to be skeptical of research that shows extreme outlier data. 

Maybe 11% of people are using illicit opioids, and 7.5% are using illicit fentanyl. Both of those things could very well be true. But I think additional research replicating those results is needed before regulators and opioid prohibitionists act on them – especially if that means further restricting access to pain medication. 

Anti-Inflammatory Drugs May Increase Risk of Pain Becoming Chronic

By Pat Anson

Aspirin, ibuprofen and other non-steroidal anti-inflammatory drugs (NSAIDs) have long been used to relieve back pain, muscle aches and other types of acute, short-term pain. The medications work by reducing inflammation, and are consider safer than stronger analgesics like opioids.

It turns out NSAIDs may do more harm than good by increasing the risk of acute pain becoming chronic.

In a series of studies on lab animals and humans, a team of researchers at McGill University found the NSAIDs, steroids, and other drugs that block inflammation may inhibit the body’s natural healing process. That can make the pain last longer than it should, according to research findings published in Science Translational Medicine.

“Clinical data showed that the use of anti-inflammatory drugs was associated with increased risk of persistent pain, suggesting that anti-inflammatory treatments might have negative effects on pain duration,” wrote lead author Jeffrey Mogil, PhD, a Professor of Pain Research at McGill University.

Mogill and his colleagues studied the transition from acute to chronic low back pain (LBP) in 98 adults by analyzing their immune cells. They focused on neutrophils, a type of white blood cell that is attracted to sites of inflammation and releases chemicals that promote an immune response to fight infection and heal tissue.

In participants whose lower back pain resolved and did not become chronic, researchers found evidence that their neutrophils and other natural biological processes performed normally, protecting them from transitioning to chronic pain.

Participants whose pain turned chronic showed signs that the healing process and neutrophils were impaired. This suggests that anti-inflammatory drugs that block neutrophils may interfere with the healing process by reducing inflammation too soon.

To test their theory, researchers analyzed health data from 500,000 people in the UK Biobank project, a long-term research study, to see if the medications they took for acute back pain had any negative consequences. They found that people who took NSAIDs had a higher risk of reporting chronic back pain 2 to 6 years later. Those who took antidepressants, which do not interfere with inflammation, did not have a higher risk of chronic pain.   

In animal studies, the McGill researchers found that laboratory mice given anti-inflammatory drugs had pain that lasted up to ten times longer than normal. Interestingly, mice given gabapentin, morphine or lidocaine – analgesics that do not have anti-inflammatory properties – did not experience longer pain episodes.

None of this proves anything – correlation is not causation – but it suggests that anti-inflammatory drugs may not be good for long-term pain management. They may be effective for short-term pain relief, but have the unintended effect of making pain last longer. If confirmed in future studies, researchers say their findings could have a substantial impact in how we manage pain.

“Together, our results suggest that active immune processes confer adaptation at the acute pain stage, and impairment of such inflammatory responses in subjects with acute LBP increases the risk of developing chronic pain,” researchers said. “Specifically, our data suggest that the long-term effects of anti-inflammatory drugs should be further investigated in the treatment of acute LBP and likely other pain conditions.”     

FDA Warns Again About ‘Gas Station Heroin’

By Pat Anson

The Food and Drug Administration is once again warning Americans about the harmful effects of tianeptine, an antidepressant found in supplements sold online and in convenience stores to help with energy, mood, pain and sexual performance.

Tianeptine is essentially an unregulated drug in the United States. It is not currently scheduled under the Controlled Substances Act, but is also not approved by the FDA for any medical use. It is, however, approved in low doses as a treatment for depression and anxiety in several European, Asian and Latin American counties.

The problem in the U.S. is that tianeptine is being sold in supplements without a prescription at doses up to 250 times higher than what is typically recommended in foreign drug products. At high doses, tianeptine can cause confusion, agitation and euphoria – which has led some to call it “gas station heroin.”

“I am very concerned. I want the public to be especially aware of this dangerous product and the serious and continuing risk it poses to America’s youth,” FDA Commissioner Dr. Martin Makary said in a “Dear Colleagues” letter to healthcare professionals.

“While the FDA is closely following the distribution and sale of these products, it is critical that you appreciate the magnitude of the underlying danger of these products, and disseminate information about it.”

This isn’t the first time the FDA has warned about tianeptine. In 2023, the agency warned consumers not to purchase or consume tianeptine products sold under the brand name Neptune’s Fix, which it blamed for “severe adverse events” such as seizures and loss of consciousness. A few months later, the FDA sent a warning letter to retailers telling them to stop selling Neptune’s Fix and any other products containing tianeptine.

Makary’s letter does not make clear why another warning about tianeptine is needed. It implies the drug is increasingly used by young people, but provides no statistics or examples of it harming users.

Since 2023, the FDA’s Adverse Events Reporting System has recorded less than a hundred cases of adverse health events involving tianeptine, most of them involving “persistent genital arousal disorder.”

Like other antidepressants, tianeptine can be used to relieve pain. A 2023 study on laboratory mice found tianeptine to be a fast-acting pain reliever, with low risk of addiction.

“We hope this revives the potential of using tianeptine for the treatment of chronic pain and associated conditions, such as anxiety and depression,” said lead author Venetia Zachariou, PhD, Chair of Pharmacology at Boston University’s School of Medicine. “By further refining this molecule, we could arrive at a pain treatment that is more effective, fast acting, and has a mild side effect profile.”

Other studies have show tianeptine may be effective as a treatment for asthma, irritable bowel syndrome, fibromyalgia, and ADHD. Like any drug, however, tianeptine can be harmful when its abused, taken in high doses, or combined with other drugs.

“Tianeptine is often taken recreationally, but it has also been used to self-treat a variety of ailments. It is frequently used chronically and, if stopped abruptly, users may experience withdrawal symptoms,” Makary said in his letter. “Historically, there has been a delayed recognition of fast-growing trends, such as opioid abuse and vaping addiction in youth. Let’s be proactive in understanding and addressing the use of tianeptine products.”

Cancer Patients Were Supposed to Be Exempt From CDC Opioid Guideline. They’re Not.

By Crystal Lindell

Cancer patients needing pain treatment were always meant to be exempt from the recommendations of the 2016 CDC opioid guideline, including the updated guideline released in 2022:

“This clinical practice guideline does not apply to patients undergoing cancer-related pain treatment, palliative care, or end-of-life care because… for many persons at the end of life, serious potential long-term opioid-related harms such as opioid use disorder might not be relevant.” 

A new study reveals that many older cancer patients were deprived of opioids anyway, even though they often require opioids as a first-line pain treatment.

The study looked at nearly 12,000 older adults on Medicare who were being treated for cancer from 2010 to 2020, including about 1,300 with advanced cancer or cancer pain.

Researchers found a significant 24% decline in opioid prescribing to cancer patients after the 2016 guideline was released. What did they get instead for pain relief?

There was a 7.5% increase in tramadol prescribing for cancer pain, while gabapentinoid prescribing for cancer patients rose by 25%. Even patients with advanced cancer were switched to tramadol or gabapentinoids, a class of nerve medication originally developed to treat seizures, not pain. 

“These findings suggest the 2016 guideline may have led to pain management shifts from first-line opioids to less-safe tramadol and less-effective gabapentinoids for older adults with cancer,” wrote lead author Rebecca Rodin, MD, Assistant Professor of Geriatrics and Palliative Medicine at the Icahn Mount School of Medicine at Mount Sinai.

It’s great to see the study authors call out tramadol and gabapentinoids as being “less safe” and “less effective.” Pain patients have long known that to be true, but the medical community still seems resistant to this information. 

While tramadol is technically an opioid, the DEA classifies it as a weaker Schedule IV drug, unlike oxycodone, hydrocodone and other opioids classified as Schedule II. The differentiation means doctors face less restrictions for prescribing it and less risk of going to prison. 

Gapabentin (Neurontin), pregabalin (Lyrica) and other gabapentinoids are prescribed off-label for cancer pain and chemotherapy-induced neuropathy —  even though they are medical conditions the drugs are not approved for. Gabapentinoids are not only ineffective analgesics for cancer pain, they can cause sedation and confusion, particularly in older adults.

Opioids, on the other hand, are very effective for moderate-to-severe cancer pain, with a response rate of 75% and a 50% average reduction in pain intensity.

Studies like this validate what the pain community has been trying to warn about for almost a decade: opioid-phobia has gone too far. It has reached a point where even cancer patients can’t get the pain relief they need.

Part of why this persists is that most people don’t think opioid restrictions are a problem until they or a loved one needs them. But if you wait until you’re dying from cancer to oppose opioid restrictions, it will be far, far too late. 

Of course, the other problem is, cancer is not the only thing that can cause debilitating pain. And people with other types of pain also deserve effective relief.

Another recent study by Dr. Rodin found that seriously ill patients in palliative and hospice care also have trouble getting opioids, due to inadequate supplies in pharmacies and insurance obstacles.

“The reality is that hundreds of thousands of seriously ill patients in the U.S. rely on opioids as a first-line treatment for pain. For people with advanced cancer, chronic organ failure, or other life-limiting conditions, opioids are often the only medications that can effectively control pain and allow them to function, Rodin wrote in a recent op/ed in STAT .  

Opioids have been used for centuries to treat pain for a reason: They work very well, and the risks of opioid addiction and.overdose are far less than what the public has been led to believe. 

Now we just need to convince doctors and the CDC of that. 

I Hate That I Need Opioid Pain Medication

By Crystal Lindell

I genuinely hate that I need opioid pain medication. 

I hate that I need it to function. I hate how expensive it is. I hate how I have to endure background checks like drug tests and interrogations to get it — like I was a criminal. 

I hate how tired it makes me. 

I hate that I can’t just buy it over-the-counter. I hate that I have to deal with judgmental doctors and pharmacists every single month to get it. I hate how vulnerable it makes me feel. I  hate how much stigma there still is around it. 

I hate that I hate it as much as I do, and yet people still think that I only take it because I’m a lazy loser who loves to get high. 

I hate that when I take it — it actually works — because that just shows how much I need it. 

Chronic pain sucks. But needing daily pain meds for a chronic condition also sucks. 

I have gone to great lengths to try to get off opioids — to try to live without them. 

I’ve done painful nerve block procedures, weekly lidocaine infusions at a hospital over an hour from my house, and gone to every specialist in that hospital. I’ve tried THC, kratom, nicotine gum, wine, and capsaicin cream. I’ve tried yoga, chiropractors, and acupuncture. I’ve tried gluten-free diets, losing weight, daily walking, and prayer.

I’ve also tried to just live with the pain. 

But I can’t. I still need opioid medication. 

I need it to shower. I need it to work. I need it to relieve the pain that makes me suicidal if left untreated.

Without opioid pain meds, I’d either be too disabled to function, or in too much pain to live. 

And I hate that so much. 

I wish that was not the case. I wish I could just exist in this stupid world without needing opioids to be alive, to actually live. 

I wish there was some other way to manage my chronic pain or even better, that I didn’t have chronic pain to begin with.

But alas, that is not the case. I literally need opioid pain medication to survive. 

So I keep taking it. 

I keep submitting to all the stupid hurdles put in place by doctors, pharmacists, and the DEA. I keep coming up with money to pay for my appointments and prescriptions. And I keep enduring the stigma that comes with it.

But I still have hope that one day people who need opioid pain medication won’t have to hate that they need it. That they’ll have access to it, and that they won’t have to submit to dehumanizing treatment to get it. 

I hope that one day needing opioid pain medication won’t be a burden to patients that must be endured on top of whatever ailments they already have. I’d rather they just bring the relief they were intended for.

The healthcare system doesn’t have to be like this. We can change it. Opioid pain medication could be accessible, inexpensive, and stigma-free. We just have to make it so.

Does Not Taking Pain Medication Make You a Hero?

By Crystal Lindell

There’s a deeply ingrained belief in American culture that suffering is both cleansing and healing. It’s likely connected to the widespread mythology about the American Dream: With hard work, you can achieve anything – emphasis on the “hard.”

If it’s easy – or even just easier – something must be wrong, and maybe even immoral. In other words, if you’re not in pain, you’re not gaining. 

This belief, sadly, has even permeated healthcare in a number ways. Many doctors act as though suffering is the point when it comes to certain ailments that we’ve moralized, like weight loss, substance use, mental health, and of course, pain.  

This thought process has also seeped into the general population, like a virus. I’ll often hear people brag that they didn’t need any of their prescribed pain medication after a surgery – as though that’s some sort of achievement. 

I’ve also heard patients with chronic ailments imply their own superiority by making it clear that they almost never take pain medication – as if that makes them better than the patients who need it. 

But suffering, in and of itself, does not make you a hero. Denying yourself medication that helps you is not some sort of gold-star achievement. You don’t get a medal because you endured more pain than everyone else. You just get, well, more pain. 

If you truly don’t need your pain medication, then obviously you don’t need to take it – but it’s not something to brag about. 

Especially because one day, as you grow older and your body deteriorates, you may find that you actually do need the very medication you thought you were a hero for avoiding. Then you’ll have the added battle of unpacking all the shame you’ve internalized about using it.

The last thing anyone with pain needs is another battle. 

Pain medications aren’t just for comfort either, and avoiding them out of some moral obligation can quite literally be dangerous to your health. In acute care situations, like post-surgery or after a bone break, you need them so that your body can focus its energy on healing. They also allow you to move more so that you can avoid post-op complications like pneumonia. 

Pain medications are also vital for chronic pain conditions. They help patients maintain their physical health, stay independent, and even do things like work and household chores. Pain meds also make it possible for us to love, laugh and socialize, just like healthy people do.  

Beyond that though, your body was not designed to endure pain every single day. If you don’t treat pain, it will start to impact your brain, and more urgently, your sleep. Without good sleep, your health will deteriorate. 

Ultimately, there is no reward for “pushing through it.” Pain and suffering will not make you a better person. In fact, they are incredibly dangerous. So if you need opioid medication or some other pain reliever, you should take it. 

And if you don’t need it, there’s no reason to brag about it. Pain won’t make you a hero. Only compassion can do that. 

The Silent Opioid Crisis: Seriously Ill Patients Face Frequent Delays in Pain Treatment

By Pat Anson

Shortages of opioid pain medication and insurance obstacles are causing frequent delays and suboptimal treatment for seriously ill patients, according to a new study by researchers at the Icahn School of Medicine at Mount Sinai.

In a survey of 52 palliative care clinicians in Mount Sinai’s New York-based medical system, nearly nine out of ten (88%) reported frequent obstacles in getting opioids for their patients. On average, clinicians spent over an hour each day on the phone with insurance companies and pharmacies trying to gain access to limited opioid supplies. Nearly a third (31%) said this resulted in suboptimal care for their patients.

The survey findings were recently published in NEJM Catalyst Innovations In Care Delivery.

“Prescriptions are written, but patient is not able to get the correct dose or quantity at their pharmacy,” one clinician reported.

“I once had to send an oxycodone prescription to eight pharmacies,” said another.

“I spent the better part of 2 days... trying to figure out a pharmacy that would [fill] the oxycodone. Sometimes I spend more time handling access issues than actually talking to and thinking about the patient,” another palliative care clinician reported.

Patients in palliative or hospice care often have severe pain from cancer, major surgery, or a sudden emergency like a sickle cell crisis. Although they are usually exempt from opioid guidelines that limit the dose or amount, seriously ill or dying patients face many of the same obstacles getting opioids as patients with more moderate pain. Researchers say this “silent opioid crisis” has largely been ignored.

“Taken together, these findings raise alarms about a new crisis in opioid access for people with serious illness, for whom opioids are often essential pain relief medicines,” wrote lead author Rebecca Rodin, MD, Assistant Professor of Geriatrics and Palliative Medicine, Icahn Mount School of Medicine at Mount Sinai.

“Our clinicians reported that the numerous challenges in opioid access led to significant adverse effects on patient outcomes, such as uncontrolled pain, rehospitalization, and opioid withdrawal, and on clinician administrative burden. That burden included time spent contacting pharmacies and insurance companies rather than on direct patient care, which adversely affected clinician job satisfaction.”

In some cases, Rodin said clinicians changed their prescriptions to “less-than-ideal” opioid formulations and doses, a change based on the drugs’ availability rather than what is appropriate for their patients.

To improve patient access, Mount Sinai clinicians started collaborating more closely with pharmacies, finding out which opioids were in stock and improving their documentation to show why a prescription is medically necessary. Outpatient pharmacies also started delivering opioids to oncology patients before they were discharged, which helps ensure there is no disruption in pain care when they go home.  

Knowing which pharmacies have opioids in stock proved to be a critical time-saver for doctors and helped Mount Sinai develop a list of preferred pharmacies that is updated in real time.  

“Our strategies have been effective within the Mount Sinai ecosystem, but they do not address root causes of barriers which can include a number of factors, such as much broader supply chain shortages at the regional and national level, public and private coverage policies, and pharmacy stocking and dispensing practices. We need to do more to address these barriers,” said Rodin.

CDC to Lose Nearly Half Its Funding in 2026 Budget Proposal

By Pat Anson

The Centers for Disease Control and Prevention and other federal health programs face severe cuts under a 2026 budget proposal drafted by the White House Office of Management and Budget (OMB).

The Department of Health and Human Services (HHS) could lose about a third of its funding for discretionary programs outside of Medicare and Medicaid. Among the dozens of programs being eliminated or downsized is the CDC’s National Center for Injury Prevention and Control, which developed the agency’s controversial opioid prescribing guideline.

Under the OMB’s budget proposal – known as a “passback” -- the CDC’s funding would be cut by about 44 percent, from $9.2 billion to nearly $5.2 billion.

“President Trump has committed to balancing the budget,” the leaked OMB document states. “Reaching balance requires resetting the proper balance between federal and state responsibilities with a renewed emphasis on federalism; eliminating the federal government’s support of woke ideology; protecting the American people by deconstructing a wasteful and weaponized bureaucracy; and identifying and eliminating wasteful spending.

“Passback levels reflect the reforms necessary to enable agencies to fulfill their statutory responsibilities in the most cost-effective manner possible. Many difficult decisions were necessary to reach the funding levels provided in this Passback.”   

The OMB budget for the CDC is intended to refocus the agency on its original core mission of monitoring public health and fighting infectious diseases, a long-sought goal of conservative activists.

Project 2025, a wish-list for the Trump Administration written by the Heritage Foundation, calls the CDC “perhaps the most incompetent and arrogant agency in the federal government.” The conservative think tank wants the CDC’s ability to set public health policy “severely confined” — a goal that the OMB budget would largely achieve if it is implemented in its current form.    

“The Budget reforms the Centers for Disease Control and Prevention to refocus CDC on emerging and infectious disease surveillance, outbreak investigations, preparedness and response, and maintaining the Nation’s public health infrastructure,” the OMB said.         

The CDC Injury Center was initially created in 1993 to improve workplace safety, but its duties have expanded over the years to include other public health issues outside of its original mission, such as drug overdoses, opioid prescribing, suicides, child abuse, and community violence. The Center’s budget for fiscal year 2024 was over $761 million.

Dr. Debra Houry, a former director of the Injury Center who is currently the CDC’s chief medical officer, advised staff last week to begin planning for the splintering of the agency.

It’s unclear what would happen to the CDC opioid guideline if the Injury Center is abolished. Although voluntary, the guideline’s recommendation to reduce the use of opioid pain medication was widely adopted by states, insurers, doctors and law enforcement, causing millions of patients to be taken off opioids or tapered to lower doses.

Patients and their advocates have long called for the guideline to be revoked. In a 2022 PNN survey of patients, providers and caregivers, 84% said the CDC overstepped its authority and shouldn’t be involved in opioid prescribing or pain management.

The CDC has already seen its workforce reduced by as many as 4,000 positions due to layoffs and early retirements in the second Trump administration. Many of those who were fired have formed an advocacy group called Fired But Fighting to get their jobs back and to demand more transparency from the administration on the downsizing of the CDC.

In addition to the Injury Center, other federal health programs targeted for elimination include the Substance Abuse and Mental Health Services Administration (SAMHSA) and the Agency for Healthcare Research and Quality (AHRQ). Some of the core functions of those agencies, such as those involved in overdose and suicide prevention, are being transferred to the Administration for a Healthy America (AHA), a new centralized agency in HHS under the direct control of Secretary Robert F. Kennedy Jr.

Under the Biden administration, the HHS budget increased by 38% and its staffing increased by 17%. The Trump administration plans to reduce the HHS workforce from 82,000 full-time employees to 62,000.

“We aren’t just reducing bureaucratic sprawl. We are realigning the organization with its core mission and our new priorities in reversing the chronic disease epidemic,” Kennedy said in a statement last month. "This Department will do more — a lot more — at a lower cost to the taxpayer."

The OMB budget proposal has not been finalized and needs the approval of Congress to be implemented. 

Alarming Study Tries to Automate Labeling of Patients with Opioid Use Disorder

By Crystal Lindell

An alarming new study attempts to automate the process of labeling chronic pain patients with Opioid Use Disorder (OUD), by using a computer to scan doctors’ clinical notes. 

A team of researchers analyzed medical records for over 8,000 patients with chronic pain, and then used an automated process to scan clinical notes from doctors, patient demographics, and diagnostic codes. The automated process was then compared to whether patients had already been given a diagnostic code for OUD. 

The researchers claim that their automated approach out-performed diagnostic codes when it came to finding patients with OUD. The codes are a key part of healthcare and are used by doctors not only to make a diagnosis, but to get reimbursed by insurers for treating patients.  

The authors say the diagnostic codes are “unreliable and underused,” and claim that their automated approach will do a better job predicting which patients are at risk for OUD and which once already have it.

“This automated data extraction technique may facilitate earlier identification of people at risk for and who are experiencing problematic opioid use, and create new opportunities for studying long-term sequelae of opioid pain management,” wrote lead author Alvin Jeffery, PhD, an Assistant Professor in the Department of Biomedical Informatics at Vanderbilt University Medical Center.

Jefferey and his colleagues say chronic pain patients treated with opioids are “at high risk of developing an opioid use disorder,” and cite a single study estimating the risk is as high as 18%. Most research puts the probability much lower, at about 1%.  

There are a number of other alarming things about this research. 

First and foremost, using any sort of automated process to label patients as having opioid use disorder is incredibly dangerous. Especially if that automated process applies the label to more patients than doctors already are. 

Also, the researchers used the “Addictions Behaviors Checklist” to determine if patients have OUD. Unfortunately, that checklist is known for lumping in a lot of patients who simply have untreated or under-treated pain. 

For example, one of the items on the checklist is “patient running out of medications early” – which means anyone who isn’t being prescribed enough pain medication could qualify as having OUD. 

Another criteria on the list is “patient expressing concern about future availability of narcotics” – a normal thing to be worried about when opioid shortages are widespread and opioid-phobia is rampant in the medical community. 

Other red flag terms they search for in doctors’ notes are “hoard,” “stash,” “left over” and “storing.” This also overlooks the fact that prescription opioids can be difficult to get, causing  many patients to keep leftover ones, just in case they needed them in the future. A recent PNN survey found that 32% of patients hoarded unused opioids. 

Once a patient gets labeled with OUD, it can quite literally ruin their lives by making it more difficult for them to get their pain adequately treated. That doesn’t just apply to patients with chronic pain. If a surgical patient experiencing post-op pain (as nearly all do) has “possible OUD” in their chart, doctors are much less likely to prescribe opioid pain medication. 

I genuinely worry that we are reaching a point where computers and artificial intelligence will be used en masse to label patients with damaging mental health diagnoses like OUD. And if that takes root, there won’t be any way for patients to counter the diagnosis. 

In fact, one of the biggest problems in healthcare is that there is no right to due process. Once you are given a medical verdict, so to speak, you are often stuck with it. 

We should all be worried that these types of automated diagnostic tools will also be expanded beyond opioid users to label other patients with stigmatizing mental health conditions that impact the quality of the medical care they receive going forward.

At this point, I’m not sure what patients can even do to stop this from happening, but my hope is that bringing more awareness to the issue will at least slow its progression. 

I personally would judge any doctors who would rely on any sort of automated process to give a patient a dangerous label like OUD, even if such a process is mandated by the hospital they work for, or even the government. 

I hope that doctors will have the moral fortitude to fight back on these types of things. Although if the medical community’s recent history with opioids is an indication, I’m not convinced most of them will stand up for their patients. 

The Pharmacy Shuffle: Navigating the Opioid Shortage Again

By Crystal Lindell

The pain medication I take daily was completely out of stock at my pharmacy, as well as every other pharmacy near us in northern Illinois this week. 

The first replacement my doctor prescribed would cost me $529 out-of-pocket – even with a GoodRx coupon. 

Let me take you through what it’s like to navigate the morphine extended-release (ER) shortage as a pain patient who depends on this medication to function. And yes, this is the second time I’ve had to deal with the shortage in the last few months.

But this time, it was much worse. 

The whole saga really started last week, when I sent a MyChart message to my doctor’s office letting them know that I was due for a refill on Monday, March 31. They sent the refill prescription to my pharmacy on Friday, with the fill date set for Monday. 

Despite the fact that my pharmacy had this prescription in their system all weekend, they waited until 11 Monday morning to tell me that morphine ER was out of stock at their store and every other pharmacy in the area – and that there was no way to order it. 

After the pharmacy tech explained that to me, she said, “Did you want me to transfer the prescription somewhere else?”

Um, you just said it was out of stock everywhere? Where the heck would you transfer it to?

I asked her what alternatives they did have in stock, so that I could let my doctor know the best options. Because morphine ER and all of the alternatives are controlled substances, she immediately started acting like I was an armed gunman asking for details so that I could rob their narcotics safe later. 

Finding an Alternative

At that point, I realized that this situation was going to take at least the rest of the day to navigate, so I was growing impatient. I told her, “Sorry, I’m just trying to avoid having to make 17 phone calls about this, playing phone tag with you and my doctor’s office.”

She relented, and finally told me that they did have morphine instant-release (IR) available. 

I then got to work calling other local pharmacies hoping for a miracle. Unfortunately, I got the same information from all of them: Morphine ER was out of stock, they had no way to order more, and they had no idea when they might be able to get it. 

So then I called my doctor and left a message explaining the situation and that morphine instant-release was probably the best alternative. I called him 2 more times because I didn’t hear back.

Finally, the nurse called me back at 5:13 pm – just 17 minutes before the doctor was slated to leave for the day. And it was not great news. She told me that my doctor did not want to prescribe the instant-release version because he was worried it would be too strong for me. 

I suggested that he prescribe oxycodone extended-release, but that I was worried about the cost. I don’t currently have health insurance. 

My doctor sent in the oxycodone replacement at 5:28 pm, just minutes before he left for the day. 

At this point, I naively assumed that the oxycodone ER would cost around $200, which is significantly more expensive than the $60 I usually pay for morphine ER. 

Sadly, my guess of $200 was pathetically low.

My pharmacy gave me two pieces of bad news: One, they didn’t have the oxycodone in stock, but they could get it tomorrow, and two, the cash price with GoodRx would be $529. 

For some reason, the pharmacist thought this was a good time to have a conversation with me about my patient profile. He said that I needed to have my doctor prescribe a non-controlled medication for me because I only get prescriptions for controlled substances from them. That’s a red flag for the DEA, which could impact him – as if patients get to decide for their doctor what they’re prescribed.

I don’t have insurance and was on the verge of going into withdrawal without pain medication, and the pharmacist thought that was the best time to tell me that I needed to get an unnecessary medication to protect him? 

At this point, I did what any sane person would do: I started crying. 

I couldn’t afford the $529 oxycodone and now I also had the added stress of knowing that my pharmacist thinks I’m a “red flag” patient. 

I immediately called my doctor again, knowing that I was making the phone call in vain, because he was gone for the day. I was routed to the on-call service. The on-call doctor didn’t feel “comfortable” prescribing a controlled substance after hours to a patient they had never met.

By now, any patience I had was as unavailable as the morphine ER tablets were – so I used it as an opportunity to tell him that perhaps their “policy” should consider how dangerous it is to send patients into morphine withdrawal. 

He said I could go to the emergency room if it gets really bad, and I reminded him that I don’t have insurance. At that point, I accepted the fact that I will have to wait until day 2, and just hope it’s resolved then.

That night was awful. It’s not a good idea to go from 3 morphine ER tablets down to zero in one day, and I spent all night in and out of a fitful sleep, before finally deciding to get up for the day at 3 am. 

I called my doctor’s office as soon as they opened and left a message with his receptionist explaining the $529 price tag. I also let them know that I had already called additional pharmacies that morning and I was still getting the same excuse about them being out of stock with no way to order more morphine ER.

I called my doctor back again in the afternoon, because I still hadn’t gotten a response. Finally, at 3:24 pm, my doctor’s nurse called back. I had to explain this entire situation again. She gasped when I told her about the $529 price tag, said she would talk to the doctor, and call me back. 

Less than an hour later, she calls to tell me that they are sending in the prescription for morphine instant-release – the same medication they could have sent in the day before, which would have saved me from a night of unnecessary suffering. 

By that point, I was thankful that I was finally closer to getting this resolved. I call the pharmacy, they tell me they got the new script, and that they’d start working on it. It’s ready when I get there, and the price is just $52.60 – far cheaper than the oxycodone replacement. 

I Got Lucky, Other Patients May Not

The whole situation was just an awful chain of events, where I felt like I was failed by every single person in the healthcare system. Why didn’t the pharmacy tell me on Friday that my medication was out of stock? Why did my doctor’s office wait until the end of the day Monday to call me back? Why did the on-call doctor shrug me off?

I say all of this knowing that I’m one of the “lucky” ones who was actually able to get this situation resolved. Thousands of other patients are also dealing with shortages of  morphine ER and other opioids. I suspect most of them won’t get an alternative medication at all. 

My last prescription for morphine ER was manufactured by Rhodes Pharmaceuticals, which did not provide a reason for the shortage to the American Society of Health-System Pharmacists (ASHP). Neither did Major, Mallinckrodt, Sun Pharma or Teva Pharmaceuticals. The drug makers would only say the medication is on “back order.”  

You might still be able to get MS Contin, a branded version of morphine ER, but it costs more and most insurers won’t pay for it, according to the ASHP, so pharmacies don’t usually keep it in stock.

At this point, I’m genuinely wondering if generic morphine ER will ever be available again. Drug makers don’t make a lot of money selling generics and opioids come with the added risk of liability, so some manufacturers have quietly discontinued production.  

I think sometimes people believe that opioid pain medications are a want, not a need. But I need morphine ER to deal with my chronic pain. It allows me to work, shower, make dinner, clean my house, and spend time with my loved ones. Most of all, it allows me to get through the day without suicidal levels of physical pain. 

If you’re a patient trying to navigate this shortage, just know that my heart goes out to you. 

And if you're a physician or a pharmacist trying to deal with this from the other end of things, I hope you’ll treat morphine ER the same way you’d treat any other necessary, daily medication. If you wouldn’t do it to a patient who needs insulin, don’t do it to a patient who needs pain medication.

A Pharmacist’s Oath: ‘The Relief of Suffering’

By Carol Levy

The words “First do no harm” are actually not in the Hippocratic Oath, at least not directly:

"I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous."

But the meaning is clear: Do no harm to patients.

I expect that from doctors, although many of us have been disappointed by their adherence to the Hippocratic Oath. What never occurred to me was that pharmacists also have an oath, which includes these pledges:

“I promise to devote myself to a lifetime of service to others through the profession of pharmacy. In fulfilling this vow: I will consider the welfare of humanity and relief of suffering my primary concerns.

“I will apply my knowledge, experience, and skills to the best of my ability to assure optimal outcomes for all patients. I will respect and protect all personal and health information entrusted to me.”  

The DEA has given pharmacists the freedom to ignore their oath, and has coerced some pharmacy chains into handing over our personal health information without a warrant.

Every time a pharmacist refuses to fill a prescription, questions why you need a medication, or asks personal questions, they are not using the “Oath of a Pharmacist.” They are instead exercising a “corresponding responsibility” under DEA regulations, which requires them to make sure a prescription for opioids and other controlled substances is valid and needed.

As far as the DEA is concerned, pharmacists have the same legal obligation as a physician to ensure that a medication has a “legitimate medical purpose.”   

The DEA essentially allows pharmacists to substitute their opinion for that of the doctor, even if it runs counter to their pledge about “the relief of suffering.” Refusing to dispense opioid medication to a pain patient who is dependent on them basically ensures suffering.

I can see some pharmacists saying, “Well, I think that opioids are dangerous. Not filling the prescription is absolutely for the welfare of the patient.”

That argument sounds legitimate. But is it?

The pharmacist has not examined the patient. He/she does not know their medical history or the effect on them when their pain goes untreated. They haven't seen the patient’s x-rays, imaging, and other tests that confirm an injury or disorder that’s causing their pain.

Pharmacists may see us as their “patient" but we are really their customers. They have a product that we want. We come to them with the legally required paperwork to make a purchase. If they have the medication, there should be no issue. They should hand it over and we should pay for it.

If you know little or nothing about a customer, where do you get the right to decide what medication they can get? That decision should be left to our doctors, not to pharmacists or the DEA. 

Those of us in chronic pain have a desperate need for doctors we can trust.  The next step is pharmacists we can trust. Pharmacists who honor their oath to relieve suffering. Not pharmacists who are so fearful of the DEA that they think their best option is to ensure our suffering.

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. 

Experts Divided About Benefits and Harms of Opioid Tapering

By Crystal Lindell

The first time I tried to do a full taper to go off morphine – after having been on it for years – I got hit with days-long withdrawal symptoms. Restless legs, diarrhea, cold sweats, extreme anxiety, insomnia, and more. It was horrible. 

So I called my doctor and asked for advice. He was not helpful, to say the least. He basically said that none of his other patients had ever had any withdrawal symptoms from morphine, so he didn’t know what to tell me. The implication was that this was a “me” problem. 

Looking back, I’m pretty sure that his other patients had just never told him about their withdrawal symptoms, so he assumed that they didn’t have any. That’s when I first realized that doctors were not a great resource for how to taper patients off opioids. 

A new study in the journal Pain Practice confirms many of my suspicions. It explored the  attitudes of healthcare professionals about the benefits and harms of maintaining, tapering or discontinuing long-term opioid therapy. 

The researchers analyzed the opinions of 28 “opioid safety experts.” Of those, 19 were prescribing physicians, while the rest were psychologists, researchers, or healthcare administrators. 

What they found is that there is little consistent advice or help from the “experts” about tapering. If you asked one medical professional for their opinion, you may get a completely different answer from another one. 

For example, over a third of the participants (36%) believe that long-term opioid therapy should be continued, while an equal percentage think opioids should be discontinued. 

More than half (57%) believe that patients can be harmed by tapering and/or discontinuation. But 18% think tapering to a lower dose is not harmful, and 29% think patients won’t be harmed by discontinuation. There were also quite a few “experts” who were neutral on the issue.   

Some recommended slow tapers (even when a prior taper was unsuccessful) and some advocated switching patients to buprenorphine, an opioid sometimes used to treat pain but is more widely used to treat opioid use disorder.

Some would try switching patients to non-opioid pain medications and therapies (even if they were unhelpful in the past), while others favor shared decision-making with patients to give them a role in deciding treatment.

Interestingly, few of the experts said they would assess patients for opioid use disorder or overdose risk.

The bottom line is that there’s little consensus about the right treatment path for patients on long-term opioids. The researchers said medical guidelines that might address these issues “may be difficult to utilize,” leaving doctors on their own to make decisions about professional liability, changing opioid regulations, patient preferences and treatment.

“In the meantime, individual care decisions that involve weighing relative harms should draw on longstanding norms of ethical medical care that call for informed consent and patient-provider conversations grounded in mutual respect,” the authors write.

I’m glad to see them specifically mention "mutual respect” between patients and providers, because there’s an obvious answer to many of these questions: Talk to patients and then believe them. 

I can guarantee you that I, as a longtime pain patient, would have more practical advice about tapering and withdrawal than many doctors or medical experts. There’s a certain amount of insight and empathy that comes from firsthand experience with withdrawal. 

I do give credit to co-author Kurt Kroenke, MD, of the Regenstrief Institute, for warning in a press release that taking patients off opioids “may result in return or worsening of chronic pain, mental health issues, drug seeking and potentially overdose and death.” 

Kroenke also notes that opioids help patients have a family life, hold a job, participate in social activities, and improve their quality of life. 

Indeed, that’s exactly the point: Opioids do help patients in a variety of ways. And in many cases, they are the only effective pain treatment. 

My hope is that future studies like this will include more direct input from patients about their experiences. If researchers really want to figure out the best guidelines for when and how to taper successfully, they should reach out to long-term opioid patients. 

Next time, instead of talking to 28 “experts,” researchers should talk to 28 patients.

New Guideline Recommends Against Injections for Chronic Back Pain

By Pat Anson

An international panel of experts has released a new guideline strongly recommending against injections for chronic back pain, saying the procedures provide little or no pain relief and there is little evidence to support their use.

The guideline, published in The BMJ, covers 13 commonly used interventional procedures, including epidural injections, joint injections, intramuscular injections, nerve blocks, and radiofrequency ablation. The injections usually involve steroids, a local anesthetic, or a combination of the two.

The expert panel conducted an analysis of dozens of clinical trials and studies, and found “no high certainty evidence” of pain relief for any of the procedures. There was only low or moderate evidence that injections work better than a placebo or sham procedure.

Injections for chronic axial or radicular spine pain have become increasingly common in recent years, and are often touted as safer alternatives to opioid medication.

However, the injections also come with risks, including infections, prolonged pain and stiffness, accidental punctures of the spinal membrane, and rare but “catastrophic complications” such as paralysis. The risks are magnified because many of the procedures are performed multiple times on the same patient.

“The panel had high certainty that undergoing interventional procedures for chronic spine pain was associated with important burden (such as travel, discomfort, productivity loss), which would be recurring as these interventions are typically repeated on a regular basis, and that some patients would bear substantial out-of-pocket costs,” wrote lead author Jason Busse, DC, a professor of anesthesia at McMaster University in Ontario, Canada.

“The panel concluded that all or almost all informed patients would choose to avoid interventional procedures for axial or radicular chronic spine pain because all low and moderate certainty evidence suggests little to no benefit on pain relief compared with sham procedures, and these procedures are burdensome and may result in adverse events.”

Chronic back pain is the leading cause of disability worldwide. Over 72 million U.S. adults suffer from chronic low back pain, according to a 2022 Harris Poll. About a third of those surveyed rated their pain as severe and nearly half said they experienced chronic back pain for at least five years. The vast majority (80%) rated opioids as the most effective treatment.

Pain Management Needs ‘Major Rethink’

In an editorial also published in The BMJ, Jane Ballantyne, MD, an anesthesiologist and retired professor at the University of Washington, said the new guideline raises questions about whether interventional procedures should even be used to treat chronic back pain. 

“The question this recommendation raises is whether it is reasonable to continue to offer these procedures to people with chronic back pain. Chronic back pain is highly prevalent, a great deal of money is spent on the injections, and a lot of patient hopes and expectations are vested in this type of treatment,” wrote Ballantyne. 

“One might ask how the situation arose whereby we spend so much of our healthcare capital on a treatment for a common condition that compromises the lives of so many people but seemingly does not work.”

For Ballantyne to ask that is more than a little ironic. She is a longtime anti-opioid activist, a former president of Physicians for Responsible Opioid Prescribing (PROP), and was a key advisor to the CDC when it drafted guidelines that strongly recommend against opioid therapy.

With opioids increasingly difficult to obtain, many patients with chronic back pain have no alternative but to have interventional procedures, spinal surgeries, or implanted medical devices such as pain pumps and spinal cord stimulators.

Some doctors and pain clinics welcome the opportunity to bill for those expensive procedures, and refuse to give opioids to patients unless they agree to become “human pin cushions.”

“One might ask how the situation arose whereby we spend so much of our healthcare capital on a treatment for a common condition that compromises the lives of so many people but seemingly does not work.”

— Jane Ballantyne, MD

One might ask Ballantyne what patients with chronic back pain are supposed to do without injections or opioids. Her editorial provides no answers.

“This (new guideline) will not be the last word on spine injections for chronic back pain, but it adds to a growing sense that chronic pain management needs a major rethink,” Ballantyne wrote.

Earlier this month, the American Academy of Neurology released a new evidence review that found epidural steroid injections have limited efficacy, and only modestly reduce chronic back pain for some patients with radiculopathy or spinal stenosis.

Gretchen’s Journey Into Chronic Pain and Death

By Maria Higginbotham

I write this on behalf of one of my dearest friends, Gretchen Lont, a fellow pain warrior whose spirit I cherished deeply. I made a promise to her to ensure her pain story is told. Gretchen’s last hope was that by sharing her experience, we might alleviate the needless suffering of others grappling with untreated or undertreated pain.

We call ourselves pain warriors, having fought tirelessly since 2016 for the rights of those struggling with painful conditions to receive adequate pain treatment. According to the CDC, over 24% of U.S. adults — 60 million people — suffer from chronic pain, surpassing the combined numbers of Americans afflicted by heart disease, diabetes, and cancer.

Tragically, Gretchen passed away on January 19, 2025 at the age of 59, after enduring years of unbearable undertreated pain. Despite persistent pleas to her doctors, Gretchen’s words fell on deaf ears. Just days before her death, she received a devastating diagnosis: ALS, also known as Lou Gehrig’s Disease.

This story in no way reflects all the beauty and individuality that was Gretchen. It defines her struggles with untreated pain, but there was an entire life in which she lived and loved. Her children and her family were her world.

I only ask that you respect her family’s privacy during this difficult time. She was a bright light that will never be erased from our hearts. I am heartbroken at the loss of a beautiful soul and dear friend.

Before her disability, Gretchen lived life vibrantly. She adored her three sons — Zach, Jordan and Nathan — and cherished every moment with her family, including her father John, her sisters Stacy and Kristen, and brother Michael.

She worked tirelessly to provide for her children and always carved out time for joy and laughter. She lived life to the fullest.

GRETCHEN LONT IN 2019

Gretchen embodied the belief that giving is a greater blessing than receiving. Her generosity knew no bounds, and her radiant smile could light up any room. With a feisty spirit, she was a fierce protector of her loved ones. She found solace in crafting — painting and making jewelry — each piece a testament to her incredible talent.

Animals had a special place in her heart. Gretchen’s social media was filled with adorable animal pictures. She often fed the squirrels and birds in her yard and adopted a special needs cat named Cleo saying, “We’re two damaged bodies just trying to survive, and we’ll do it together.”

Gretchen's journey into pain began with an accident at an upscale restaurant in Tacoma, WA. A spill that had gone uncleaned caused her to slip and fall, resulting in a severe back injury which later required surgery. This injury ushered in years of excruciating pain, followed by joint pain, more surgeries, and a possible diagnosis of Rheumatoid Arthritis at the age of 57.

Desperate for relief, Gretchen explored every alternative pain treatment available, yet none eased her suffering. Living with chronic pain is akin to living with a chronic illness: you feel invisible. On the outside, you might appear fine, but inside your body is screaming in agony.

Eventually, she found a compassionate pain management doctor who, for many years, treated her as an individual. With the help of opioid pain medication, she managed to regain a semblance of life — spending time with her family, painting and crafting, celebrating holidays, and enjoying the beauty of nature. Her passion for art blossomed, allowing her to create stunning jewelry and amazing paintings.

A Wasteland for Pain Patients

Sadly, Gretchen’s doctor, after years of facing scrutiny from medical agencies, decided to retire, joining many other physicians who closed their doors due to the hostile environment surrounding pain management. In 2021, she gave her patients a year’s notice about her plans, in the hope it would be enough time to find new care.

Unfortunately, the state of Washington proved to be a wasteland for chronic pain patients. Most physicians here are unwilling to take on new patients who are on opioid therapy, and those who do will often refuse to continue the opioids and force the patients to try previously failed methods.

Gretchen’s only option was to have an invasive surgery for a pain pump. To qualify, she had to undergo extensive psychological and physical evaluations, which she passed. However, she was then told she had to reduce her opioid dosage by 75%. This drastic cut left her bedridden, trapped in a cycle of agonizing pain.

After months of suffering, the pain specialist told her that her insurance, Medicaid, would not cover the cost of the pain pump or surgery. In desperation, Gretchen asked if her opioid medication could be increased to a dose that would provide some relief from the agonizing pain. Unfortunately, she only received a minimal increase, leaving her to continue suffering in unbearable agony.

On October 3, 2023, Gretchen felt a deep despair settle over her. Bedridden and in relentless pain, she questioned why a person should be forced to suffer this way. There was always a battle to fight -- like finding a doctor willing to provide adequate pain treatment, dealing with pharmacists who were choosing whether or not to fill a valid prescription for medication, and insurance companies not covering prescribed pain treatment.

She felt like a burden, unable to spend time with her family or do any of the things that brought pleasure in life. The pain specialist seemed indifferent to her deteriorating condition. Gretchen made the heartbreaking decision to take all her medications in an attempt to end her suffering. Fear gripped her and she confided in her son, who immediately called 911.

Resuscitated through CPR, the ER team noted that this tragic episode could have been avoided had her pain been managed appropriately. They had seen this happen many times. Gretchen was discharged with the recommendation to consult her pain specialist about increasing her medication.

The following day, during a virtual visit, her pain specialist expressed sympathy and promised to improve her pain management. Yet, hope quickly faded the next day at an in-person meeting. The doctor declined to increase her dosage, and Gretchen continued her downward spiral.

A friend referred her to a new doctor who specialized in both primary care and pain management. This physician was willing to help, but insisted on a cautious approach. They tried various medications, which provided minimal relief, but Gretchen’s health continued to decline.

The years of untreated pain had caused irreparable damage. She was losing 5-8 pounds weekly, struggled with swallowing, and faced increasingly severe breathing difficulties. She was a mere shadow of the vibrant person she had been two years prior.

A New Diagnosis

By late December 2024, Gretchen's breathing worsened, leading her doctor to recommend a visit to the Emergency Department at UW Medical Center for treatment of suspected pneumonia and a neurology consult.

That’s when Gretchen was diagnosed with ALS and learned that the suffering she endured for so many years stemmed from that incurable, painful, and deadly disease.

gretchen 3 days before she passed

It should be known that chronic pain patients often go decades struggling with intractable pain without a definitive diagnosis. Like Gretchen, many of us are diagnosed with a rare disease or medical condition when it’s too late to do anything. 

Admitted to the hospital on January 1, 2025, Gretchen was discharged to home hospice on January 17. Just an hour after returning home, she suffered a coughing fit and anxiety attack. Gretchen had realized she was dying.

I happened to call her at that moment and the only 2 words I could make out were “hospice” and “dying.” She was immediately sent to a nearby hospital, her body frozen in fear; her eyes and mouth wide open, arms outstretched. She stayed like that for just over 24 hours before she stopped breathing.

Long before she passed, Gretchen shared these words with me:

“Please help patients like me who have no options. We did not choose to have medical conditions that cause pain. No doctors will take you if you’re a chronic pain patient. It’s devastating to be in such a vulnerable position and feel abandoned. Our medical system is supposed to provide us with compassionate care and treat us as unique individuals. Instead, pain patients have become pariahs.

I share my story because I want those in power to understand that we are not just individuals suffering in pain. We are family members with loved ones who care for us and have loved ones that we care for. We deserve to live our lives filled with laughter and joy, not confined to a bed, incapacitated, and suffering in agonizing pain. There is an easy answer: treat our pain!

Please stop punishing those who suffer in pain. Our lives matter.”

Gretchen has her angel wings now, flying free from pain — a bright light in our lives whose flame will never be extinguished

Maria Higginbotham is a patient advocate and chronic pain sufferer who has an aggressive form of degenerative disc disease. Multiple surgeries not only failed to relieve her pain, but left her with adhesive arachnoiditis, a chronic inflammation of spinal nerves. Maria has also been diagnosed with Ehlers-Danlos disease and Scleroderma.

New Illinois Law Gives Doctors Freedom to Prescribe Opioids Without Dosage Limits

By Crystal Lindell

Illinois State Senator Laura Fine (D) has seen the unintended consequences of the 2016 CDC opioid guideline first-hand. 

After Fine’s husband Michael lost his arm in a horrific head-on collision, he suffered from chronic, residual pain known as “phantom limb” pain. She watched as he often struggled to get adequate pain care because his doctors were too scared to prescribe enough opioid medication. 

 “[His] pain is real. It’s so debilitating some days that he literally cannot get out of bed,” Fine told PNN. “His doctor needs the freedom to treat that pain.”

The 2016 CDC guideline, which was meant to address opioid overprescribing, ended up being too much of an overcorrection, and led many doctors to start under-prescribing pain medication, regardless of patient need. The guideline recommended that daily doses not exceed 90 morphine milligram equivalents (MME), a threshold that was soon adopted by Illinois and dozens of other states.  

So when a state bill meant to address this issue came through the Illinois House and needed a Senate sponsor, Fine jumped at the chance.

The measure, which was approved unanimously by both chambers and signed into Illinois State law by Governor Pritzker on February 7, allows physicians to authorize prescriptions for opioids and other controlled substances without strict dosage limits:

“Provides that decisions regarding the treatment of patients experiencing chronic pain shall be made by the prescriber with dispensing by the pharmacist in accordance with the corresponding responsibility as described in federal regulations and State administrative rules. 

Provides that ordering, prescribing, dispensing, administering, or paying for controlled substances, including opioids, shall not be predetermined by specific morphine milligram equivalent guidelines. 

The Illinois law also seeks to protect patient confidentiality by preventing the release of prescription and treatment information without a legal order verified by the Illinois Department of Human Services or an administrative subpoena from the Illinois Department of Financial and Professional Regulation. 

Many states currently allow the DEA and other law enforcement agencies access to patient information in their prescription drug monitoring programs (PDMPs). Some pharmacy chains even provide that information without a warrant or subpoena.

“Just because you’re in pain, that doesn’t mean you’re doing something wrong,” Fine said. “The last thing we want to do is to make the doctors or patients feel like criminals.”

Fine also said part of why the measure was so important to her was that when patients don’t have access to prescribed opioids, it can drive them to take extreme measures, such as self-medicating, self-harm, or going to the black market.

She hopes the new law will help people suffering from chronic pain receive the care they need, without barriers or misunderstandings.

Fine said she was surprised by how many pain patients wanted to work with her to get the law passed and how important the issue was to them. She’s happy to send the message that political advocacy does work. 

STATE SEN. LAURA FINE (d)

“Getting this legislation passed, for them, was life changing,” Fine said. 

One of those advocates was Kat Hatz, who posted about the Illinois legislation on Facebook after it passed, writing:

“This was a labor of love, & we had incredible sponsors, but it’s also a testament to the fact that people’s voices were heard. It will protect a vulnerable community, chronic pain patients & their healthcare practitioners, & it helps to address disparities in healthcare that pertain to the under-treatment of pain (for) women, people of color, disabled folks, & other traditionally disenfranchised communities.”

The Illinois State Medical Society (ISMS), which backed the bill, also wrote about the importance of the law as it was moving through the legislation process. 

“The passage of this bill by the General Assembly is a win for physicians and patients, as too many doctors have become reluctant to prescribe opioid treatments to patients suffering from chronic pain out of fear of being criminalized or having their license suspended or revoked,” the society said in a statement.

The ISMS said many prescribers were worried that regulators and law enforcement would consider them “pill pushers” without understanding that the 2016 guideline is outdated. The CDC released an updated guideline in 2022 that gives doctors more flexibility in writing prescriptions.

“Every patient is different,” the ISMS said. “Pain treatment should be tailored to the needs of the individual.”

Fine said she hasn’t heard about other states taking up similar measures, but she hopes that Illinois can be an example. 

“We all need an advocate,” she told me. “Being in pain isn’t something to be ashamed of.”