How the Healthcare System Makes Pain Worse

By Pat Anson

Do you ever find yourself doing everything right, but never feeling better?

You take your meds, see your doctors regularly, and focus on good nutrition and healthy habits. 

Despite all your efforts, your pain and fatigue never go away. On some days, just getting out of bed or taking a shower is a challenge. You become anxious, depressed. And your mind fills with dark thoughts. 

Will I ever get better? Why am I failing? What is wrong with me?

Millions of people with chronic pain and chronic illness have those same thoughts, and Tamera Lynn Stewart has a message for them: “It’s Not All In Your Head… or Your Body”

That’s the title of Stewart’s new book, which was inspired by her own experiences as a young girl dealing with chronic pain.

“I had a lot of different infections, and was in and out of the hospital when I was young and real little. At three years old, I told my mom that the pain was so bad I just wanted Jesus to take me home. So pain is like nothing new in my life. It has been 24/7 my whole life,” Stewart says. 

Now 45, Stewart has lived through dozens of surgeries and estimates that she’s seen 30 medical specialists. Only in the past decade did they realize that her pain was caused by autoimmune disorders, such as lupus, rheumatoid arthritis, and mixed connective tissue disease. 

Toss in a diagnosis of cervical cancer at age 29 and you have someone who has more than her share of health problems. And a patient who recognized that the U.S. healthcare system often fails the very people it is supposed to help.

“The premise of the book is more about understanding that the systems we deal with, whether it's policy or insurance or the doctors themselves, that they contribute to our pain just as much as our own body. And as much as patients don't like to admit it, sometimes our minds,”  Stewart told PNN.

“The gaslighting that we get from medical providers, insurance companies, whatever, from all of them, that gaslighting turns into depression, second guessing yourself, giving up possibly, or at least slowing down on seeking care. Which then translates into letting our bodies maybe not get the care they need because we quit seeking it, or the depression again keeps us from maybe eating real well, or doing all the other things we know to do. And then you finally go back to a doctor, and they gaslight you again and it starts over again. That's not a way to heal.” 

Stewart likens health to a loop, with your body, nervous system and external systems (insurance, doctors, hospitals, etc.) so connected to each other that you can’t address one without helping or hurting the others.

‘And we get stuck in those loops. I myself am very guilty of that. Got stuck in a ‘I'm never gonna get better’ loop. And then something has to happen to break me out of that. That's where the brain comes in, the mind comes in. For me, spirituality comes in. And until that loop gets broken, it just keeps getting worse. It's like an up-spiral of pain instead of an up-spiral of life,” she explained.

Asked what advice she would give to patients, Stewart has a simple answer: Be direct with doctors. And keep it simple. 

Don’t overwhelm doctors with everything that’s happened to you since the age of 12 (especially on your first visit) and don’t tell them what the Internet diagnosed you with yesterday. Overwhelm a doctor with too many problems, and you’ll be gaslit or sent to a specialist, which means more expenses and more delays in getting treatment. 

“In general, it sounds good that if you have 60 different problems, maybe they'll take you seriously. But I think it's the other way around. I think if you have two or three very significant problems you focus on, I think maybe they're less overwhelmed,” says Stewart. 

Stewart took the lessons she learned as a patient and put them into advocacy. She helped found the P3 Alliance, a patient advocacy group that was influential in getting a law changed in her home state of Oklahoma to better protect patients from opioid deprescribing. The law also gave patients access to their prescription drug monitoring (PDMP) records and strengthened the exemption for treating cancer pain with opioids.

In an age when political parties squabble about nearly everything, Stewart and her fellow advocates were able to get the changes in state law passed unanimously by the Oklahoma House and Senate, and then signed into law by the Governor.

It wasn’t easy, but Stewart says persistence and hard work can be effective in getting government policy changed. And she’s hopeful more patients will get involved in advocacy.

“There's so much more to do. Everywhere, there's so much more to do,” she says.

Healthcare Costs Are Hitting America Where It Hurts: The Wallet

By Renuka Rayasam and Sam Whitehead, KFF Health News

Bill McAdams, a 45-year-old travel nurse from Holiday, Florida, was uninsured last year when he experienced a stroke. He hadn’t been able to afford his agency’s health plan, which would have cost $3,600 monthly to cover him and his wife. The hospital that treated him sent him a bill for $93,000.

Janet Marx, 56, of Milford, Connecticut, has doubled up on insurance coverage through her husband’s employer and Medicare because she has lupus and fibromyalgia, disabling chronic conditions. Still the couple sold their home, the house where Marx grew up, to afford the costs of their medical care.

Sheila Robinson, 61, in District Heights, Maryland, has a $10,000 deductible on her Affordable Care Act plan, so she tries to negotiate cheaper self-pay options when she sees a doctor. She puts the $659 monthly premium on her credit card, even though she knows not paying the bill in full means she must pay interest.

“I am just afraid to even go to the doctor,” said Robinson, who has arthritis, a pinched nerve in her neck, and high blood pressure. “Every month, I am in the hole.”

This year, KFF Health News has chronicled how rising healthcare costs are upending the lives of Americans. Reporters have heard from more than 130 people across the U.S. who are trying to afford their premiums, copayments, prescriptions, and medical bills even as housing, energy, and food costs swell. People told us they are forgoing health insurance coverage, rationing their medications, cutting back on doctor visits, and putting off health procedures.

“We’re not talking about the uninsured or those who are low-income who are struggling now,” said Rebecca Kirch, executive vice president at the National Patient Advocate Foundation. “Now it’s become an all-of-us issue.”

While healthcare costs have largely grown faster than the overall economy for decades, they’ve escalated at a dizzying pace recently. In 2023 and 2024, health spending hit its highest growth rates in two decades excluding 2020’s covid-fueled surge.

The prices that hospitals, doctors, and other clinicians charge have increased, along with how much care people are getting. Overall health spending hit nearly $5.3 trillion in 2024, up from $3 trillion a decade earlier, according to federal data.

American health costs, expected to continue growing faster than the overall economy and help fuel it, are projected to hit 20% of the nation’s gross domestic product by 2032, up from just under 19% today.

At the same time, Americans are shouldering higher insurance premium payments and other out-of-pocket costs. Low-income and middle-class people with health conditions are feeling the brunt.

The GOP-led Congress decided against extending covid pandemic-era subsidies for Affordable Care Act plans and cut billions from other federal health programs to offset the costs of tax cuts for wealthy Americans and heightened immigration enforcement, arguing that government insurance programs are rife with fraud and waste.

Despite $500 rebate checks sent by President Donald Trump to fewer than 5% of higher-income ACA marketplace enrollees, his administration has been expanding access to insurance plans with higher deductibles and lower premiums that push more costs to patients if they need care. Employers are passing along rising healthcare costs to employees, and clinicians are charging patients up front.

It’s not all bad news for consumers: Prescription drugs recorded their biggest price drop in decades this year. The Biden and Trump administrations both worked to help lower them amid consumer pressure.

But many say they’re still feeling the pain of rising prices. Ahead of the November congressional midterm elections, healthcare costs continue to top a list of the public’s worries about affordability, according to polling conducted in mid-September by KFF, a health information nonprofit that includes KFF Health News.

Nine in 10 Democratic respondents and three-quarters of Republican ones said the U.S. healthcare system needs either a complete overhaul or major changes.

‘Profit Margins Everywhere’

The typical American family spends about $5,600 a year, or 9% of their income, on health insurance premiums, out-of-pocket healthcare costs, and taxes that fund health programs, according to the Peterson-KFF Health System Tracker. But overall, the nation’s annual healthcare spending comes to the equivalent of more than $15,400 per person.

The reason behind those high U.S. healthcare costs is straightforward: The prices that clinicians, hospitals, drugmakers, and other players in the health system charge are high. For example, while doctors in the U.S. perform about a third as many inpatient knee replacements as in other wealthy nations, the cost per surgery is higher than in most of those countries, according to the Peterson-KFF tracker.

More recently, multiple trends have driven that price growth in the U.S., health economists and policy researchers said. Hospitals are merging and using their consolidated market power to charge more. New technologies and therapeutics, such as GLP-1s for weight loss and diabetes, have high price tags. Inflation and the Trump administration’s tariffs are layering costs onto everything from latex gloves to medical devices. And higher numbers of uninsured Americans means fewer people to bear more of the costs.

“It’s really everything all together at once,” said Christopher Whaley, a Brown University health policy researcher.

Why the U.S. has high healthcare prices, however, is more complicated. Whaley and other health economists point to how the American healthcare system is structured and financed. Clinician charges and administrative costs are higher in the U.S. than in other countries. The U.S. doesn’t centrally set all prices for services, ration care, or control for quality.

In most local American markets, insurers negotiate prices with hospitals, clinicians, and drugmakers, which then charge for every test, procedure, or medicine regardless of its outcome. More than half of all healthcare payments were based on this fee-for-service model, according to a 2022 research brief published in the journal Health Affairs. Under this model, hospitals and doctors make more as they bill more.

The complexity of different billing systems, rates, insurers, and networks adds to the price tag. The cost of sending out bills and managing paperwork can be hundreds of billions of dollars. Insurers try to keep medical costs in check, in part by limiting what they’ll reimburse. They also take their own cut along the way.

“There’s profit margins everywhere, and there are varying degrees of financial incentives throughout the healthcare system,” Whaley said.

The incentives, however, don’t necessarily promote better health.

Steven Ullmann, director of the Center for Health Management and Policy at the University of Miami Business School, where he’s a professor, said that the country’s health system encourages expensive treatments over low-cost preventive care. He said that keeps people locked into seeing clinicians because they’re in their insurance networks, not necessarily because they produce better outcomes.

Even though people in the U.S. pay more for care than in other countries, Ullmann said higher prices don’t always mean better quality. For example, he said the prices for prenatal ultrasounds in Orlando vary widely with no obvious difference in quality.

“Same city, same procedure,” Ullmann said. “That is a reflection of a broken system.”

And those high prices can keep people from seeking needed services.

‘I’m Going To Be Homeless”

In 2025, a health system garnished the wages of Carmilla Collins, 52, of Omaha, Nebraska.

Collins, a single mother, said she didn’t question the tests or medicines doctors ordered when she got diagnosed with thyroid disease or received regular preventive procedures such as a colonoscopy — until she found herself in debt.

The hospital hired a collection agency to sue her for unpaid medical bills that she accrued when she was both insured and uninsured. Then a court allowed the debt collector to take hundreds of dollars out of her paycheck.

Collins remembered being “spitting mad.” She almost couldn’t make rent.

“I’m working two jobs,” she said. “And I’m going to be homeless because of this noose that’s around my neck.”

CARMILLA COLLINS

Collins eventually qualified for financial assistance from the hospital, but she said she put off thyroid surgery for four months even as a goiter swelled against her throat, making it hard for her to eat. She had health coverage through her employer at that point but was worried about affording the costs of her deductible and other fees. Eventually, she said, her health declined until she could no longer put off the surgery.

“I equated taking care of my health with debt that I couldn’t afford,” she said.

How to slow rising costs — and overall U.S. health spending — has long vexed elected leaders and policymakers.

That’s because reducing overall healthcare costs for patients means doctors, hospitals, drug companies, insurers, or other players across the health system would get paid less.

“For the most part, health spending for us is income to someone else,” said Zack Cooper, a health economist at Yale University.

Eliminating administrative complexity or setting price caps — which is how some countries lower overall costs — faces steep odds at the federal level. Since 1998, the health sector has spent more than $14 billion lobbying members of Congress in both parties, according to OpenSecrets, a nonprofit that tracks money in U.S. politics.

‘Nobody Can Prepare for This’

After Lynn Ludaway, 40, was diagnosed with multiple sclerosis three years ago, she said, she considered divorcing her husband just to make her eligible for aid to cover medical costs, even though they wanted to stay together.

She initially had coverage through her husband’s job but still faced large out-of-pocket bills. Ludaway, who lives in Evanston, Illinois, also racked up expenses from navigating life with a disabling health condition, such as paying for Uber rides and a cane as her mobility declined. Her medical bills stretched into the tens of thousands of dollars.

“I thought I was well prepared for an emergency,” said Ludaway, who gave up her consulting business and raided her savings and retirement accounts to pay for tests and treatment. “Nobody can prepare for this.”

She now pays a $500 monthly premium for coverage through Illinois’ ACA marketplace. But because of her husband’s job, the couple makes too much to qualify for state or federal assistance.

“I am in this weird in-between,” she said. “I need to rest to heal, but I need to work to live.”

LYNN LUDAWAY

Instead Ludaway relies on private financial aid programs, through foundations and the hospital system where she gets her care. She forgoes what she can’t afford, including dental and mental healthcare. She said she must be even more budget-conscious than she was in college.

“Broke undergrad has nothing on chronic illness,” she said.

Shifting Costs

Many current federal healthcare proposals focus on shifting costs rather than lowering them, and ideological differences about who should bear those costs deeply divide lawmakers.

The GOP has prioritized tax and spending cuts, which put the cost more on patients than taxpayers and are expected to boost the number of uninsured, to eliminate what they claim is pervasive fraud in government health programs. Last year, Democrats fought to extend enhanced subsidies for marketplace plans, which would buffer patients somewhat from premium hikes by pushing the bill to taxpayers.

Some progressive Democrats, including candidates winning primaries in battleground states, are reviving calls for “Medicare for All,” versions of which would create one centralized public insurer. Such a system could end out-of-pocket costs and provide major relief for patients such as Ludaway, but not necessarily cut overall health spending. Clinicians, hospitals, drugmakers, and other groups could still lobby for high prices, which taxpayers would then be on the hook to pay.

And some ideas with broad bipartisan support, such as forcing hospitals and doctors to publicly post medical prices, have had little effect on costs.

Policy debates about increasing access to coverage and improving quality of care should also focus on overall health spending, not just who’s picking up the tab, said Michael Chernew, a professor of healthcare policy at Harvard Medical School.

“We don’t have some rich uncle that’s coming and just paying for all of our care. One way or another, collectively we are paying,” Chernew said. “It’s just we’re shifting who is paying, how much we’re paying, and through which mechanisms we pay.”

Despite trillions in health spending, the nation’s system leaves millions of uninsured and underinsured people unable to afford care. About 27 million people — nearly 10% of the population under age 65 — didn’t have health insurance in 2024, according to KFF. And the nonpartisan Congressional Budget Office projects that number to grow by 10 million or more by 2034 because of policy and funding changes.

Melody Stephens in Berryville, Arkansas, became uninsured when she dropped her ACA marketplace coverage for this year after the monthly premium payments for her and her younger daughter jumped from just over $200 to more than $2,000.

MELODY STEPHENS

Stephens, 55, a geriatric nurse at an assisted living facility, said she also couldn’t afford the $1,000 monthly premium payment for her employer-sponsored plan.

“There was just no way I could do that,” Stephens said. “That was just not feasible.”

Stephens first got an ACA plan after she was diagnosed with anal cancer about a decade ago. Even with coverage, she filed for bankruptcy two years ago.

While her plan largely covered cancer care, it left her with big bills for treatment of the side effects of radiation.

Now she and her daughter are relying on financial assistance and cutting back on care. When her daughter, a college student, had some surgeries, the hospitals wrote off the bills, Stephens said. But they still owe money for tests and treatments.

Stephens also stopped taking a GLP-1 that she was prescribed for diabetes and a medication for nerve pain because of the cost. Stephens can’t afford a colostomy, so she lives with incontinence, she said.

She said she wishes lawmakers in Washington would fix the healthcare system. “They just seem to fight,” she said.

A Tipping Point?

Next year, insurers say they expect to hike premiums for ACA marketplace plans by 15%, the second year in a row of double-digit premium increases. Employer health costs are expected to rise 9.5%, likely increasing the burden on workers.

Policy researchers and economists who have studied health costs say they are skeptical that federal lawmakers are ready to tackle overall health spending, even as the midterm elections loom.

But pressures are building, said Michael Cannon, a health policy analyst at the libertarian Cato Institute. “We cannot stay on this path forever,” he said.

The pain of high costs is felt throughout the economy, including by employers and state governments that help foot the bill for medical care. That reality is giving way to policy proposals that buck some past political positions.

Last year, the GOP-led legislature in Indiana capped how much some nonprofit hospitals can charge patients covered by employer health plans. Starting in 2029, five of the state’s largest nonprofit hospitals risk losing their tax-exempt status if they charge those patients more than the price limits. And this year, Texas Republican Gov. Greg Abbott proposed capping certain drug prices. Both cost-control efforts, along with Trump’s plans to lower prescription drug prices, are traditionally more the domain of left-leaning politicians.

For McAdams, the nurse in Florida, dealing with high health costs took a physical toll. He believes a subsequent stroke he experienced was caused by the stress of haggling over his hospital bill.

After his first stroke in September 2025, McAdams bought insurance, but it didn’t cover preexisting conditions. In March, he started experiencing problems with his vision and balance. He went to an urgent care center, instead of the emergency room.

“I was so afraid of dealing with the billing issues again that I did not want to go to the emergency room,” he said.

Then, after talking with the hospital regarding his stroke bill later that month, he said, he experienced problems again and landed back in the ER anyway — with the second stroke.

bILL MCADAMS

Now he is applying for Social Security Disability Insurance because he can no longer work as a nurse. The health system eventually lowered his total bill to $50,436 — but that’s still more than he can afford without a steady salary. He and his wife are also expecting a baby this fall.

McAdams was once proud to be part of the nation’s healthcare system, which saved his life and those of so many others. But the financial stress has changed his view. Now, McAdams said, his trust in it is gone.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism.

Most ER Patients Keep Leftover Opioids at Home

By Crystal Lindell

Most of the patients who have leftover or unused opioids after visiting an emergency department for acute pain keep them at home for future use, according to a new study that also found those excess pills are rarely diverted.

Researchers in Canada asked over 2,000 patients what happened to opioid prescriptions they were given at discharge after being treated in the ER’s of 7 hospitals in Quebec and Ontario. Most were treated for acute pain episodes such as fractures, renal colic, musculoskeletal pain, and back pain. Patients who were already taking opioids were excluded from the study.

The research findings, published in JAMA, found that many patients wound up having an excess number of pills prescribed to them.

Two weeks after discharge, 92% reported filling their opioid prescription, and 84% said they still had some unused opioids at home. 

Most patients (60%) stopped taking opioids because they were no longer in pain or their pain was tolerable. About one in six (17.3%) stopped taking them due to side effects or because they were afraid of becoming dependent.

Three months after discharge, nearly two-thirds (61.9%) of patients still had unused opioids at home. Most were unwilling to part with them because they wanted to keep them “in case it still hurts.”

Notably, less than 1 percent said they had given their leftover opioids to another person or sold them. 

While the low rate of diversion is encouraging, researchers are concerned about the high number of leftover pills and the unwillingness of many patients to dispose of them. More than one-fourth (26.1%) said they would not consider returning the opioids, even if they were offered a cash refund. 

“A considerable proportion of participants reported still having unused prescription opioids at home, most of which were stored in unlocked locations and potentially within reach of children and adolescents,” wrote lead author Raoul Daoust, MD, a Clinical Professor in the Department of Family Medicine and Emergency Medicine at the University of Montreal.

“Unsafe storage practices and the tendency to retain opioids for months following an ED visit for acute pain may contribute to opioid misuse.”

At a time when many patients in Canada and the U.S. have reduced access to opioid medication, it’s not surprising that many patients are stockpiling their unused pills for future use.

An interesting finding from the study is that patients who retained their unused opioids were significantly more likely to have higher education. Among those who kept their opioids, 73.6% attended a college or university, compared to just 58.5% of patients who disposed of their opioids.

The researchers said their findings support tailoring opioid prescriptions to individual patient needs to reduce unused medication, as well as take-back programs and patient education on safe use, storage, and disposal of opioids.

Congress Needs to Fund Solutions to America's Most Neglected Disease

By Dr. Ilene Ruhoy 

Twelve years ago, I got sick — and no one believed me. Doctor after doctor dismissed my symptoms, writing them off as everything from chronic sinus infections to perimenopause. 

Even as a neurologist, I couldn't get anyone to listen. It took far too long to find the truth: a 7-centimeter tumor was growing in my brain. 

I have never forgotten what it felt like to be dismissed by the very people who were supposed to help me — so now I listen to the patients everyone else has stopped listening to.

That's what brings people from across the country to my office, many carrying the same disease and the same exhaustion of not being believed: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS.

The CDC estimates that up to 3.3 million people in the United States suffer from ME/CFS, yet there has been almost nothing done for them, until now.  

The National Institutes of Health approved a clear plan for how to help these patients in 2024: The ME/CFS Research Roadmap. After the November midterm elections, Congress will finish writing the appropriations bills that would fund it. All it takes is $50 million to get started.

ME/CFS is a chronic, multi-system neuroimmune disease. Its hallmark is post-exertional malaise — a severe worsening of symptoms after even minimal physical or cognitive effort — accompanied by autonomic dysfunction, cognitive impairment, chronic pain, fatigue, and immune dysregulation.

There is no FDA-approved treatment and no diagnostic test for ME/CFS. Standard labs and imaging come back normal. For decades, these patients have been written off just like I was, and told the problem is anxiety, stress, or something in their heads.

By the time these people reach me, most have already seen upward of twenty doctors. They arrive expecting to be dismissed, but I refuse to let that happen.

In spending thousands of hours with more than one hundred people living with ME/CFS, I noticed something no one could explain away: these people who had been brushed aside by the medical system were all describing the same disease. They had the same crashes. The same triggers. The same collapse of careers, families, and social lives.

These were strangers scattered across the country. They couldn’t all be imagining the same illness. They are not a mystery to me anymore, but they remain one to the government agencies that fund medical research.

An additional devastating component to ME/CFS is that it completely debilitates some people’s lives without shortening them. People living with the disease can remain bedbound for decades.

But I don’t see this as a tragedy. It’s an opportunity. If we find effective treatments, the people who suffer from this disease today can still be helped.

One thing I’ve come to learn is that their defining symptom is not "fatigue." What these patients experience is an energy mismatch: the body's demand for energy outstrips its supply, and the supply cannot catch up.

My most severely affected patients cannot type for thirty seconds without triggering a crash that sets them back for days. Anyone who has not lived it cannot fathom it — and that understanding gap is part of why the disease has been underfunded.

The research community is ready. I work alongside groups across the country investigating the causes of this disease, and I can tell you what holds them back. It is not a lack of ideas.

Teams are pursuing genuinely novel science. What stops them is money. I know researchers with promising findings who cannot complete their studies because the funds ran out mid-stream. That is the quiet scandal of ME/CFS research: discoveries stall not because the science fails, but because the funding does.

The NIH Roadmap lays out a path forward. The scientific community helped build it. What the Roadmap lacks is an appropriation to match its ambition. Fifty million dollars is a lifeline for millions of Americans, but in the context of the funding bill, it’s simply a rounding error.

The science is ready. The researchers are willing. The patients have waited long enough. It’s time to fund the roadmap. 

Dr. Ilene Ruhoy is a board-certified neurologist trained in environmental toxicology and integrative medicine who has special expertise in chronic and complex illnesses. She has worked with around 100 people living with ME/CFS over her career and has given talks to spread more awareness on the disease. 

Dr. Ruhoy is the author of “Invisible No More” – a practical guide to recovery for patients living with Long Covid and other complex chronic illnesses.

  

Christina Applegate ‘Still in Shock’ Over MS Misdiagnosis

By Crystal Lindell

Actress Christina Applegate told the world this week that her multiple sclerosis (MS) diagnosis was actually a misdiagnosis.

It was an incredible act of bravery -- especially since she has become a well-known MS advocate over the last few years. Now she has no explanation for the MS-like symptoms that began in 2021. 

“I had a reason as to why my day sucked every day. And now I don't have a reason. And it's very unnerving and it's really confusing for me," Applegate said.

The 54-year old actress shared the news while hosting an episode of her podcast, which is co-hosted by actress Jamie Lynn Sigler, who has MS. The podcast is literally named after them both having MS: “MeSsy.”

Sigler had been hosting the podcast solo for seven months while Applegate dealt with her worsening health. In her return appearance, Applegate shared how a doctor told her she did not actually have MS, an autoimmune disease that attacks the central nervous system,

“She came into my room and she said, ‘Congratulations, you don’t have MS.’” Applegate said. “I was like, not happy at all. Everybody else was so happy.”

Sigler sympathized with her.

"I could see if that happened to me. I could see everybody around me celebrating and me being like, 'Well, what the fuck?'" she said.

Applegate conveyed just how difficult it has been to process the news, especially since losing the diagnosis did not result in her losing any of her symptoms.

"I'm back at square one," she said. "I don't know what's going on with me."

Applegate, who rose to fame playing Kelly Bundy in the Fox sitcom “Married... with Children,” shared that her first symptoms started with numbness in her toes. She later experienced balance issues, severe fatigue, and chronic pain. Eventually she needed a wheelchair and was hospitalized. 

After numerous tests, they found almost 40 lesions on her brain, which led to the MS diagnosis.

"That was my answer. [MS] was my answer to everything that was going on,” Applegate told her co-host. "And I leaned into you. I leaned into other friends. I leaned into the community. I felt safe because I had a place to talk, which was here. I felt like, okay, I have an answer. I have an answer. What a great thing."

Applegate tried infusions as a treatment for MS, which she said wreaked havoc on her body.

That made her doctor wonder. She told Applegate, "I want to see something. I want to take you off of the infusion and I want to watch your B cells.”

When the B cells, a type of white blood cell that fights infections, didn't change, they began to study her original diagnosis. That led to the revelation that she didn’t have MS at all.

That didn’t mean she was suddenly healthy though.

"I have every symptom of someone with MS. Every single one,” Applegate said. “I'm still in shock and I'm sitting here having slept all day yesterday feeling like absolute crap because of the heat. My legs aren't working. You know, all the same stuff is happening to me. And yet I have this thing of like, well, you don't have that, so you know, maybe you're faking it?”

She also delved into how much this has impacted her perception of herself.

"It's like I feel like I let everybody down, you know? It's this weird feeling of like I became… the poster children for MS,” Applegate shared through tears. “I mean, it's like I had a reason as to why my day sucked every day. And now I don't have a reason. And it's very unnerving and it's really confusing for me."

Sigler offered her comfort.

"I think this brings up an interesting point… about the labeling of things and how attached we become to them for so many reasons, right?” her co-host said. “Because it feels like there's a road map at least that you have for things. And this [misdiagnosis], we've come to learn that this is not that rare of an occurrence, especially when it comes to MS.”

Indeed, that’s maybe the most heartbreaking thing about the misdiagnosis. It’s relatively common for MS-diagnosed patients.

A 2019 study found that as many as 1 in 5 patients are misdiagnosed with MS. The researchers said the most common alternative diagnoses were migraine (16%), radiologically isolated syndrome (9%), spondylopathy (7%), and neuropathy (7%).

Most disturbing of all, the misdiagnosed group in the study had received approximately 110 patient-years of unnecessary MS disease modifying medications and infusions.

"There's a pretty damn high number of misdiagnoses with MS and that's after people have been going through the process of it with the infusions for many years," Applegate said.

Applegate said the podcast will continue despite the change in her diagnosis.

"There's so many people that listen to us who don't have MS… who have problems with parenting, who have  problems with life shit, or they do have, you know, neuropathy, whatever it may be. You don't have to be ill to listen to our podcast."

Indeed, while putting a face to MS was important work, Applegate being brave enough to now put a face on being misdiagnosed may be even more important. In an already underserved and misunderstood community, they are in need of a strong advocate like her.

Gabapentinoids Nearly as Risky as Opioids in Back Pain Study

By Pat Anson

Being prescribed gabapentinoids for low back pain increases the risk of overdosing or developing opioid use disorder (OUD) nearly as much as taking opioid pain medication, according to a large new study.

Researchers at Columbia University and New York University analyzed how nearly 400,000 Medicaid patients were initially treated for acute low back pain, to see which treatments increased the risk of OUD or an opioid related overdose.

Their findings, published in JAMA Network Open, show the overall risk is relatively low, with just 2.3% of patients having OUD or surviving an overdose after 12 months. That includes patients who were treated with chiropractic care, physical therapy and other non-pharmacological treatments, as well as patients who took opioids and other medications for their low back pain. 

Risk of OUD or Overdose After 12 Months

JAMA NETWORK OPEN

When broken down into individual treatments, the degree of risk varied considerably.

Patients who took daily opioid doses of 50 morphine milligram equivalents (MME) or more had a 146% greater chance of OUD or overdose, while those who took less than 50 MME for more than 7 days had a 105% higher risk.

What’s surprising is that patients prescribed gabapentinoids had a 101% higher risk of OUD or overdose. That is significantly higher than those taking benzodiazepines, acetaminophen, steroids or other medications.

Gabapentinoids such as gabapentin (Neurontin) and pregabalin (Lyrica) are a type of  nerve medication originally developed to prevent seizures. They are now widely prescribed off-label for both acute pain and chronic pain, even though there is little evidence supporting their use in pain management.

“Gabapentinoids were also associated with a higher risk of OUD or overdose diagnoses. Although sometimes perceived as safer alternatives to opioids, emerging evidence suggests important safety concerns,” wrote lead author Lisa Doan, MD,  Associate Professor of Anesthesiology at NYU Langone’s Interdisciplinary Pain Research Program.  

“Evidence supporting gabapentinoids for LBP (low back pain) is limited, with a systematic review and meta-analysis finding that gabapentin did not provide significant pain improvement compared with placebo, pregabalin was less effective than other active comparators, and gabapentinoids increased the risk of adverse effects.”

What’s also clear from the study is that many of the doctors treating Medicaid patients weren’t following clinical guidelines for acute low back pain. 

The American College of Physicians recommends chiropractic care and other nonpharmacologic therapies as first-line treatments for low back pain, but less than 50% of patients in the study received those therapies as part of their initial care. 

Anti-inflammatory medications and muscle relaxants are also recommended – and were frequently prescribed. But opioids were used as the initial treatment in 21% of cases and gabapentinoids in nearly 6% of them. Neither is recommended for acute low back pain.

Of particular concern to researchers is the co-prescribing of opioids and gabapentinoids, which is increasing despite the documented risks.  A recent study found that nearly 60% of patients on long-term opioid therapy were also prescribed gabapentinoids, which increase the risk of sedation and respiratory depression, particularly for elderly patients. 

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. 

Studies Find Long Term Use of Opioids Ineffective

By Pat Anson

Results from two new studies suggest that opioid pain medication is useful for treating short-term acute pain, but the benefits decline when opioids are taken long term.

In the first study, researchers at the University of Alberta conducted a systematic review of 27 randomized controlled trials of opioids used in the treatment of osteoarthritis or chronic low back pain. Trials were excluded from the review if participants had back pain from surgery, cancer, lumbar spinal stenosis, radiculopathy, sciatica, or rheumatic conditions. 

The study findings, recently published in the British Journal of General Practice, show that opioids work well in the first four weeks of acute pain, but provide little or no benefit if used for longer periods. If taken for more than 12 weeks, researchers say opioids may increase a patient's sensitivity to pain – a controversial theory known as hyperalgesia. 

"If someone breaks a limb, has surgery or a dental problem, where you anticipate the problem is going to resolve in a relatively short time, it's probably OK to give an opioid for that," says principal investigator Scott Garrison, MD, Professor of Family Medicine at the University of Alberta.

"Opioids still have a role in managing acute pain. But if the patient has a condition where this pain is going to be chronic, I think you should reconsider whether you should be offering an opioid, because you may only be giving very short-term pain relief with the possibility of worse pain in the long run, not to mention other potential problems from the opioids."

Garrison and his colleagues made a point of excluding studies from their review if they used a trial design known as "enriched enrollment randomized withdrawal" or EERW. Critics of the EERW method claim it skews data in favor of long-term opioid use.  

While the researchers acknowledge that opioids provide clinically meaningful pain relief for acute pain, they discourage patients from ever taking them. In his own family practice, Garrison says patients refuse to take opioids once he warns them about potential side effects.

"It's very hard to get people off opioids once they have started them, but when patients are given this information about potential harms, they don't want the drug," Garrison said. "Absolutely every patient who is told this up front ends up not taking the opioid. It's so hard to stop, but it's so easy not to start if people are fully informed."

No Changes in Brain Anatomy

The second study also concluded that long-term opioid use does not reduce pain or improve physical function in people with chronic back pain. But the research team at Northwestern University found that long-term opioid use does not cause lasting harm to the brain.

The study compared 70 patients who took opioids for chronic back pain to 70 similar patients who were opioid naive. On average, the opioid group took low to moderate doses for 7.8 years.

The study findings, published in the journal Brain, show the opioid and non-opioid groups reported nearly identical levels of pain, about 5.4 on a zero-to-10 pain scale. The opioid group had slightly worse results for physical function and mental health.

When MRI images were taken of both groups, researchers found little evidence that years of taking opioids altered the brain's anatomy.

"The psychological and brain properties of the participants on long-term prescription opiates were essentially intact," said senior study author A. Vania Apkarian, PhD, director of the Center for Translational Pain Research at Northwestern University Feinberg School of Medicine.

"That's good news because there's this fear nowadays that as soon as you start ingesting opiates, your brain is going to go crazy, and it doesn't," Apkarian said. "But the bad news is that we saw no sign that their pain had gotten any better by using this drug for so many years."

This is believed to be the first study to look at long-term opioid consumption and its effect on the brain. While the MRIs showed no changes in brain anatomy, the images did find differences in the opioid group in how brain regions function and communicate with each other. 

That was particularly true in parts of the brain involved in reward and motivation, suggesting that long-term opioid use may encourage drug-seeking behavior. 

Previous studies of long-term opioid use found that only a small percentage of patients become addicted or abuse their medication and the risk of long-term use is low.

A large study in Australia that followed over 1,500 patients on opioids for five years found that “problematic opioid use” was infrequent. Less than 10% of patients asked for higher doses or for a prescription to be renewed early. By the end of the study, patients were more likely to have stopped taking opioids (20%) than to be diagnosed with opioid dependence (8%).

Do Native Americans Need a Pain App?

By Crystal Lindell

The University of Oklahoma has received a $3.4 million dollar federal grant to help Native Americans with chronic pain – and they’re going to spend all of it on an app.

The money, which is coming from a five-year National Institutes of Health grant, will go towards building the first chronic pain mobile health (mHealth) app designed by and for Native Americans. Nearly one in three Native Americans live with chronic pain, more than any other segment of the U.S. population.

In a news release about the project, the university makes clear the app will only provide behavioral and psychological assistance for pain, because “medications, while commonly prescribed for chronic pain, are also easily abused.” 

Neither of those things are true. Many Americans with chronic pain find it nearly impossible to get opioid pain medication, so they are definitely not “commonly prescribed.” And most pain patients do not abuse their medication.

The researchers referenced our country's history of horrific treatment of Native Americans — including the fact that Oklahoma was the end of the Trail of Tears — to justify this whole endeavor.

“Native American communities have experienced intergenerational trauma, and they continue to experience contemporary traumas,” said Jamie Rhudy, PhD, a professor in the OU Department of Health Promotion Sciences. “These are the types of experiences that can place our brains on high alert and amplify pain.”

It’s infuriating to read that rationale, knowing that programs like this only serve to keep an effective pain treatment away from people who need it: opioids.  

Researchers say the app will focus on things like stress management, anxiety, sleep hygiene, physical health and diet.

“All of these can be drivers and amplifiers of pain,” said Rhudy. Then, in a quote only someone without chronic pain would say, he added this:

“Chronic pain is largely a construct of the brain. We’ve been taught that we have pain because maybe our joints wear out, or we have tissue damage, but everyone experiences pain differently, which our mHealth therapies will recognize and respond to,” said Rhudy.

In short, it’s all in your head.

Then he adds: “Sleep, stress and discrimination are not variables easily targeted by medications, but they do respond well to targeted psychological and behavioral interventions.”

Actually, as a chronic pain patient myself, I can tell you that sleep and stress are both easily targeted by medications. It’s just that many of those medications are controlled substances that have been blamed for our nation’s drug problem.

We asked Tamera Lynn Stewart, an Oklahoma patient advocate, what she thought of the app. She’s glad it's being developed with direct input from Native Americans, but says it “misses the mark pretty badly” in removing barriers they face in getting pain care.  

“My problem isn’t that they’re offering behavioral tools; it’s that we’ve spent years restricting, stigmatizing, or taking away treatments that actually help people, and now we’re approaching an already underserved population with an app while heavily emphasizing discrimination and psychology as drivers of their pain,” said Stewart, National Director of the P3 Alliance, a patient advocacy group. 

“We say they are disadvantaged in receiving quality care for their pain without admitting much of it was caused by the same policies incentivizing this study. All while forgetting to mention that many historical and current drug war policies criminalized or removed the very tools the indigenous population once relied on to treat their pain.” 

Stewart is worried that a pain app designed for a very specific high-risk population will eventually be deployed as a treatment for everyone else – something the pain community has seen before.

“I’m all for adding options. I’m much less enthusiastic when ‘adding an option’ starts looking like another way to redefine the problem so the healthcare system can offer less actual care,” Stewart told PNN.

After building and testing the app, OU researchers plan to have a randomized controlled trial to see how well it works.

“With the team we have in place we’ll be able to bring all the necessary components together to develop, test and deploy a novel, culturally tailored chronic pain intervention that will be scalable,” said Rhudy.

I will definitely be keeping an eye out for the trial results – especially if the app is then pushed on the larger chronic pain community. I’ll be especially interested to see how effective the app is compared to opioid pain medication – although I doubt they will include any data on that.

It’s so disappointing to see money and energy going to projects like this, which are clearly a result of opioid-phobia. Every time a project like this is funded, it means less money and effort going toward interventions that probably have much a higher chance of actually helping people in pain.

How a Professional Advocate Can Help Patients

By Jennifer Schlinger 

Imagine your mom has just been discharged from the hospital to a rehabilitation center after hip replacement surgery. She has the paperwork, the facility’s address – and a long list of questions. 

Will her insurance cover her entire rehab stay? Does she have enough pain medication until she gets settled? Will the hospital transfer her prescriptions? Are they accurate?

Scenarios like this are exactly what patient advocates are trained to help with. They understand patients’ and families’ concerns, ensure their voices are heard by medical staff and interface with care teams, insurance companies and facility administrators. They also coordinate care, set up follow-up appointments and address potential gaps or blind spots in care.

I train social workers – who often serve as patient advocates – to help people in a variety of settings, including hospitals and nursing homes. Earlier in my career, I served as a professional patient advocate supporting people in hospitals, home health and hospice.

A trained patient advocate can provide much-needed support for people on their healthcare journey. Here’s what you need to know to work with one most effectively.

The Evolving Field of Patient Advocacy

Patient advocacy emerged out of the Civil Rights Movement’s focus on individual protections and rights. In 1966, healthcare advocacy pioneer Ruth Ravich founded the Department of Patient Representation at Mount Sinai Hospital in New York – widely considered the beginning of the patient advocate role.

Historically, doctors made decisions for patients without fully involving them in their own care. But during the 1960s and in subsequent decades, a growing patient rights movement embraced the importance of informed consent for honoring patients’ autonomy. Patient advocates arose as an important voice in this movement by educating patients about their rights and helping them participate more fully in decisions about their healthcare.

For decades, “patient advocate” was a self-described title, not a standardized role. As the healthcare system became increasingly complicated, the need emerged for national standards on skills, ethics and best practices. In 2018, the Patient Advocate Certification Board established basic requirements for patient advocates and created a professional certification, which is the only one available for this role in the U.S.

Certification is not required to be a patient advocate, but it indicates that a person has received specific training for the role. To become certified, patient advocates must pass an exam demonstrating a knowledge of health and medical concepts, issues relating to paying for care, an understanding of the healthcare system, how to work collaboratively with patients and other areas of competency. They must complete continuing education to maintain certification.

Some healthcare professionals who serve as patient advocates are not certified and instead have learned relevant skills through their education or professional experiences. They may work in rural healthcare facilities, for instance, where they wear multiple hats as nurses or social workers who are also advocates.

What Does a Patient Advocate Do?

Patient advocates are trained to support, inform and guide patients through the healthcare system. They help explain medical information, such as a medication’s side effects or treatment options. They also make sure patients’ questions are answered and their concerns are addressed.

When a patient receives a referral to a specialist, a patient advocate can connect care across various healthcare providers, making sure details about the patient’s condition or care priorities don’t fall through the cracks and helping to arrange transportation to appointments.

Early in my career, for instance, I worked at a hospital with patients who were being discharged to their home or to a long-term care facility. I started by understanding each patient’s goals, assessing their living arrangements and the type of care they needed and identifying any concerns they had about their discharge plan. 

Before they left the hospital, I coordinated community support or additional care they might need, such as home-delivered meals, home healthcare, and physical, occupational or speech therapy.

Patients often have family members who are advocating on their behalf – and family support is invaluable. Working with a patient advocate can provide something different: a grounded, objective perspective, expert knowledge of the healthcare system and knowledge of resources that patients and family members may not be aware of.

Indeed, patient advocates interact closely with family members and friends who are involved in the patient’s care. As liaisons between the patient, family and healthcare providers, their job is to keep the patient’s needs, preferences, goals and values at the center of their care.

Working with a patient advocate can help patients feel more confident in making informed decisions. According to a 2023 survey by a nonprofit alliance called the Coalition of Healthcare Advocacy, 92% of patients and healthcare providers reported that working with a patient advocate positively affected patients’ care.

Understanding Bills and Insurance Coverage

Managing financial aspects of healthcare can be overwhelming for patients and family members, particularly in the midst of a health crisis. Medical bills are often impenetrable documents littered with complex codes and terminology, and sorting through charges and details about insurance coverage can feel intimidating, if not downright paralyzing.

A patient advocate can provide a knowledgeable outside perspective on these issues that’s not clouded by the urgency and emotional weight of illness.

Some patient advocates have specialized knowledge in medical billing, coding, insurance and other financial matters. They can answer questions about medical terms or clarify charges on a patient’s bill, review the bill for errors such as incorrect or duplicate charges and assist with figuring out insurance coverage and reimbursement.

A healthcare advocate can help make sure that patient’s needs, preferences, goals and values remain at the center of their care.

If necessary, they can also appeal claims by acting as a liaison between the patient, the healthcare facility and the insurance company. Patient advocates can also help patients work with a hospital to set up a payment plan, explore additional financial support or coordinate access to community resources.

If a finance-related question falls outside an advocate’s knowledge or expertise, they can help the patient identify the right people to talk to.

Finding and Working with a Patient Advocate

Finding a patient advocate is not always as straightforward as it should be.

If you are unsure where to start, ask to speak with a hospital social worker or case manager. In some cases, an advocate’s services are provided by the healthcare organization or are covered by insurance, but in others, the patient or family must pay for them out-of-pocket.

Many healthcare facilities, including Veterans Affairs, have patient advocates on staff. You can contact your local hospital or clinic and ask to be connected to their patient advocate. 

Alternatively, you can search for a patient advocate in your area through the Centers for Medicare and Medicaid Services website or the National Association of Healthcare Advocacy.

If a certified patient advocate is not available within your healthcare facility, request to speak with a social worker. Social workers have the education and expertise to support patients and families, to connect them with resources and to advocate for patients’ needs.

Before meeting with a patient advocate, identify your main objectives – for example, preparing for a transition home, clarifying a treatment plan or understanding medication changes. Then, write down your main concerns and questions. The Care Partner Project offers checklists for questions to ask healthcare providers, prepare for doctor visits, evaluate senior living communities and more. Gather any relevant information, such as medication lists, medical records, insurance documents and medical bills.

When you meet a patient advocate you’re considering working with, you can feel out whether they are a good fit by asking about their professional background, areas of expertise, experience and credentials. Some questions you might start with include:

• What is your experience with cases like mine? (For example, patients being transferred to a rehabilitation center, if that is your situation.)

• Can you provide an example of how you helped a patient or family work though a difficult healthcare situation?

• How do you typically communicate with patients and families, and how often can I expect to hear from you?

• How do you help patients speak up about their concerns and preferences to their healthcare providers?

Finding a healthcare advocate you trust can make navigating a complex health situation much less overwhelming.

Jennifer Schlinger, PhD,  is a Clinical Associate Professor of Social Work at the University of North Dakota

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

I Was Shocked How Effective Shockwave Therapy Can Be

By Madora Pennington

I have an old knee injury. You probably have one, too. 

Or maybe it’s your hip, ankle or elbow.  Something that flares up from time-to-time and makes you say in frustration, “This old thing. Again?”

Decades ago, I slipped. Wearing heels as I was climbing into an SUV in the rain, my kneecap came down on the running board, stretching out the tendon. My knee swelled to the size of a baseball. Tendons stretched like that do not snap into their old shape. I have been limping ever since.

There is no simple surgery for a patella alta (high kneecap) injury. Over the years, I tried physical therapy, knee braces, taping the kneecap in place, prolotherapy (sugar injections) and platelet-rich plasma injections (PRP therapy). 

All of those helped to some degree. But still my knee continued to bother me, often when I did activities that I love, like tennis and running. 

It became so annoying, I thought it was time to work on it again.

Healing Shocks That Reduce Pain

In looking around for new modalities, I found something I had never heard of: Extracorporeal Shockwave Therapy (ESWT).

ESWT is a noninvasive treatment that uses a device applied to the skin near injured areas that emits high-energy acoustic sound waves that promote healing and repair tissue. 

Shockwave therapy was originally developed to break up kidney stones without surgery. Once shattered into smaller sizes, kidney stone fragments pass out of the kidneys easier and exit the body with the urine. 

The treatment on kidney stones was successful, but there were concerns that the shockwaves were so intense they might damage nearby bones. It turns out the shocks actually stimulate new bone formation. Later investigations showed that shockwaves at a different dose could also stimulate cellular regeneration in soft tissue. 

In 2000, the FDA approved a shockwave device for chronic plantar fasciitis (pain in the soles of the feet). And in 2002, the FDA approved another device for the treatment of tennis elbow, a repetitive strain injury common to tennis players.

Like nearly all technology, today’s ESWT devices are smaller, cheaper and easier to operate effectively. Most protocols suggest several sessions separated by about a week. Unfortunately, they are usually not covered by insurance.

ESWT can be used on a wide variety of conditions that would normally send a patient to physical therapy, such as tendon injuries, slow-healing bones, arthritis, calcific tendonitis of the shoulder, and more. 

Shockwave therapy can encourage bone formation, new blood vessels, growth factors, healing in tendon cells, and collagen remodeling, while lowering inflammation and pain signaling.

Shocking My Knee 

Studies on ESWT for a kneecap injury such as mine showed mixed results and were not very promising. But that did not deter me. 

I was happy to try something besides an injection, especially something that could reawaken dormant healing processes. Having physical therapy along with ESWT was also recommended, so I did that, too.

Shockwave therapy sounds like it could be painful. A few times during my treatments, it was. The tech can turn down the machine if the zaps are too much. Because stronger pulses are more effective, I tried to endure them. 

The shocks were oddly pleasant, giving me a bit of an adrenaline rush and immediate relief. The tech did not isolate her treatment to just the joint. She used it around the neighboring tissue and muscles.

After my second treatment, to my utter delight, going up and down many flights of stairs was easy for my knee. It actually felt good. My kneecap held firmly in place, not snapping around as it can. 

This was a faster, more significant improvement than any treatment I have had in the past.

I purchased a package of shockwave treatments and had more sessions to use, but my knee felt like it didn’t need any more shocks. So I switched to having ESWT on overworked areas that have helped my body compensate for the deficiencies in my knee. The overused muscles in my pelvis and neighboring hamstring helped keep me balanced as I unconsciously favored the injured knee.

The shockwaves flowing through my back and glute muscles were intense, but just as soothing as they were on my knee. I could feel them all the way through to my hip joint. The treatment lifted feelings of stress that I was not aware of, perhaps by allowing more blood flow around the nerves caught under all my musculoskeletal stress. 

This other-side treatment accelerated my physical therapy progress. In fact, my physical therapist’s assessment was that the knee itself was in good shape — it was the old compensatory muscle patterns that were causing me pain, like the shortened thigh muscle pulling the kneecap and causing discomfort. 

Those other modalities I pursued in the past may have been effective, but I never had the full course of physical therapy the injury needed until now. Perhaps this is why the studies I read recommend physical therapy in addition to ESWT in order to get the best result. 

Time will tell if my old knee injury and the package of dysfunction surrounding it can be resolved. I am optimistic. My tennis has never been better, as formerly tight, overworked muscles are free to support my swings. Running is not bothering my knee at all. 

I would try ESWT again on other unhappy joints and tissue in the future.

Chronic Pain Patients Have Highest Rates of Stigmatizing Language in Medical Records

By Crystal Lindell

Chronic pain patients are the most likely group to find discriminating and judgmental language in their medical records, according to a new study published in JAMA.

The researchers also found that having a low income increased the likelihood of patients finding stigmatizing language in their records. Being older decreased the chances of finding it.

The research is based on a survey of 500 people from a nationally weighted sample of U.S. adults. The study was made possible by passage of the 21st Century Cures Act in 2021, which began a new era of transparency in healthcare by giving patients immediate access to their clinical notes in electronic health records.. 

About 1 in 6 patients (17.1%) reported discriminating or judgmental language (DJL) in their medical records or health care encounters. Such stigmatizing language was defined as any terminology that "conveys disbelief, disapproval, or implicit judgment about a patient’s character, behavior, or social identity.”

Researchers anticipated that medical providers would be more careful about their choice of words, knowing patients might see them. But five years after passage of the Cures Act, there was “little if any improvement” in stigmatizing language.  

“Our findings are consistent with a broader literature on stigma and health communication, demonstrating that DJL can undermine trust, reduce patient engagement, and negatively influence patient perceptions of health outcomes,” wrote lead author Natasha Steele, MD, Stanford University School of Medicine. 

A major limitation of the study is that only 16 of the 500 patients were diagnosed with having chronic pain, a very small sample size. Steele and her colleagues found that those sixteen patients were 3.25 times more likely to find stigmatizing language in their medical notes, compared to people who did not have chronic pain. It was the highest rate of any group in the study.

Low-income patients were 2.64 times more likely to find discriminating and judgmental language, compared to other income groups.

Interestingly, older people were slightly less likely to find stigmatizing language compared to other age groups. For each additional year of age, the odds of finding it dropped by about 2%.

Beyond that, the researchers did not find links between gender, race, ethnicity, or educational level and the likelihood of patients finding stigmatizing language.

Not surprisingly, finding negative language in their medical records made patients less likely to trust that their medical providers were doing a good job of documenting their health issues. 

About 85 percent of patients said they were less likely to see that clinician again and 75% worried it would influence their treatment. A similar percentage thought it would lead to worse health outcomes, including the possibility of medication or diagnostic errors. 

The stigmatizing language was also associated with nearly 6-fold higher odds of diminished trust in clinicians to write accurate and respectful notes.

The researchers said that while health record transparency is a good thing, clinicians need to change their note-take practices in response.

“Our study demonstrates the need for clear standards promoting respectful communication in both medical documentation and clinical interactions. Clinical training programs should emphasize person-centered language, particularly since written notes are increasingly visible to patients, with special attention to populations that may be subject to bias based on social identity,” they said.

Clinical Trials Begin in U.S. for First Cannabis-Based Medicine for Chronic Pain

By Pat Anson

The first clinical trials in the United States for a cannabis-based medicine for chronic pain are getting underway.

New York State has authorized a clinical trial of VER-01 in patients with chronic low back pain from lumbosacral radiculopathy, commonly known as sciatica. VER-01 was developed by Vertanical, a German biopharmaceutical company, and recently became available by prescription in Europe, where it is sold under the brand name Exilby.

Exilby is a full spectrum extract derived from THC, CBD and terpenes found in cannabis sativa. Unlike other cannabis-based medicines already on the market, such as Epidolex and Marinol, which are used to treat epilepsy and improve appetite, Exilby was specifically developed to treat chronic pain.

“This is an important moment for cannabis research in New York and for the future of evidence-based cannabis medicine,” John Kagia, executive director of New York Office of Cannabis Management (OCM), said in a news release.

“For decades prohibition and criminalization limited the ability of researchers to fully understand cannabis and its potential therapeutic applications.Clinical trials like these give us the opportunity to develop safe and effective solutions for people living with conditions that can be difficult to treat.”   

Research into the pain-relieving properties of cannabis has been slow in the U.S., in large part because of marijuana’s longtime status as an illegal Schedule One controlled substance. Marijuana is now more readily available for research purposes, but there’s a lot of catching up to do with the rest of the world.

“Clinical research allows us to move beyond anecdote and evaluate cannabis-based medicines with the same rigor applied to any other therapy,” said Nakesha Abel, PhD, Director of Scientific Programs & Research Health & Scientific Affairs at OCM. “Well-designed trials help clarify not only whether a treatment is effective, but at what dose, for which patients, and with what risks.”

Vertanical is also recruiting patients in Texas for a Phase Three clinical trial of VER-01 with 810 participants. Researchers are looking for patients with chronic painful lumbosacral radiculopathy who have previously used non-opioid analgesics that were not sufficient for pain relief or caused unwanted side effects. 

Studies are being launched by Vertanical at over two dozen other sites in the U.S. If you’re interested in participating in one of the free clinical trials of VER-01, click here for more information.

In studies already completed in Europe, VER-01 provided better pain relief to patients with chronic low back pain in a head-to-head comparison with low doses of opioids. Vertanical is also studying VER-01 as a treatment for osteoarthritis and painful diabetic peripheral neuropathy 

Exilby became available in Germany and Austria in September, with approval in the United Kingdom expected by the end of the year.

In March, VER-01 received a Breakthrough Therapy designation from the FDA, which will speed up its development and review in the U.S. But even with “breakthrough” status, a new drug application for VER-01 to the FDA is not expected until 2028.  

I’ll Never Stop Advocating for 7-OH

By Crystal Lindell

It looks like the federal 7-OH ban is actually going to go through this time, and it’s probably going to happen right before Thanksgiving, on November 13.

I guess they just want to make sure everyone who uses 7-OH is miserable and in pain for the upcoming holiday season. Cheers!

RIP 7-OH. You changed my life, and died far too young.

The fact that they aren’t even taking public comments this time is gut-wrenching. They really don’t care about us at all. 

But I will say that I am grateful that we still have one last month with legal 7-OH. I have tapered down significantly, and have hope that I can get fully off it in the next few weeks with almost no physical withdrawal symptoms.

Unfortunately, as a chronic pain patient, it’s not just about avoiding physical withdrawal. I’m still not sure how I’m going to functionally live my life without it.

In fact, when I got the news on Friday that the DEA had updated their letter of intent, I had just taken my morning 7-OH dose, which I need to be able to get ready for the job I only have because of 7-OH.

I’m very worried that I’m going to lose my job when I lose 7-OH.

I started working full-time again in April, and it’s been great! I have already worked my way up to manager, and finally have health insurance again.

I also have called in sick zero days since I started, despite the fact that I have intercostal neuralgia in my ribs, which causes extremely debilitating pain throughout the right side of my torso.  

Over the 13 years I’ve suffered from it, it’s been very difficult to find any medications that help with that pain. Even strong opioids only did so much. I worked a corporate job from home for many of those years, and even with morphine and hydrocodone, I would have to miss work because of the pain.

But then 7-OH came along and changed my whole life.

The fact is, 7-OH works on my pain. It works really well. And, it even helps me with energy as well. I assume that is because 7-OH comes from kratom, which comes from the coffee family of plants.

There’s some controversy in the 7-OH community about whether or not it’s relevant that it comes from the coffee plant rather than poppy plants. Some people say it’s disingenuous to pretend that 7-OH doesn’t impact your brain’s opioid receptors, which it definitely does.

But so does coffee. And as a user, I think it’s disingenuous to try to separate 7-OH entirely from coffee.

It is clearly a coffee-related drug. Coffee is one of those things that you will naturally drink less of if you don’t need it, and in my experience it will even start to taste different. As it happens, this is also my experience with both kratom and 7-OH. My body does not want to take more when I don’t need it.

I used to drink 2 cups of espresso a day, but since I started taking 7-OH, I’ve quit coffee entirely. I just have no taste for it, and the 7-OH does a much better job of giving me the stable energy I need to get through the day.

Before I end this column, I do want to reiterate that I will never again be purchasing any products from any of the ”qualified vendors” that support the American Kratom Association. I would call on all fellow 7-OH users to boycott them as well.

The AKA fought for this 7-OH ban because they think it’s eating into their profits.  

So, instead of making their own products more competitive, they decided the best course of action was to prevent people like me from using their competitors’ products. 

Even worse, the U.S. government is going to enforce the ban, by imposing “administrative, civil, and criminal sanctions applicable” – not just on 7-OH manufacturers, distributors and retailers, but for simple possession. Even research about 7-OH will be a criminal offense!

Land of the not-so-free, I guess.

I don’t know what my future looks like without 7-OH – but I do know what my past looked like without it. Multiple days each month bed-bound, unable to reliably show up for work, no health insurance, and lots of really, really bad pain days.

I refuse to accept that I will be forced back into that life, and that there are no other options. 

I’ll never stop advocating for 7-OH to be legal, no matter how hopeless that fight feels. After all, if medical cannabis can be reclassified and taken out of Schedule One, anything is possible. 

The life I have rebuilt is too valuable to give up on now.

Nationwide 7-OH Ban Likely to Begin Nov. 13

By Pat Anson

The U.S. Drug Enforcement has amended its scheduling order for 7-hydroxymitragynine (7-OH), placing further restrictions on the manufacture, sale and possession of concentrated forms of the kratom alkaloid.  

Under the amended order, to be published next week in the Federal Register, 7-OH products and all other concentrated kratom alkaloids will be classified as illegal Schedule One controlled substances. The order will likely take effect November 13, with no opportunity for public comment.

Kratom leaves have been used for centuries in Southeast Asia as a natural stimulant and pain reliever. Their active ingredients – 7-OH and other alkaloids – occur naturally in kratom in trace amounts. But in recent years manufacturers have found ways to concentrate the alkaloids in new products – essentially turning a mild pain reliever into a potent product with opioid-like effects.

7-OH and other kratom derivatives were recently involved in the deaths of two college students, and there is concern about their potential to cause addiction and overdoses. Three U.S. Senators this week called for all kratom related products to be scheduled or banned – including leaf kratom.     

That created further pressure on the DEA and Justice Department to act. 

“Our nation’s children and communities deserve protection from harmful substances like 7-OH and other powerful synthetic drugs. The actions taken by the Department of Justice today reflect our commitment to keeping Americans safe and holding drug traffickers accountable,” Attorney General Todd Blanche said in a DOJ press release.

Left unsaid in the press release is that the DEA’s amended order is largely in response to a lawsuit by the American Kratom Association (AKA), which represents natural leaf kratom vendors. The AKA supported the scheduling of 7-OH, but wanted a “carveout” for mitragynine pseudoindoxyl, a kratom alkaloid that the DEA banned just two months ago.

The AKA filed a lawsuit against the DEA in July, asking a federal judge to intervene and get the DEA to amend its original orders banning sales of 7-OH and mitragynine pseudoindoxyl.

“They actually did two things that were important. One is they established a carveout for mitragynine pseudoindoxyl, and they changed the standard for 7-OH to a much more restrictive standard, which we fully support because it captures more of the potential synthetic products that they could tinker with,” explained Mac Haddow, an AKA lobbyist and spokesman.

Under the new order, the ban on mitragynine pseudoindoxyl is being lifted to keep it from potentially interfering with sales of leaf kratom. Only trace amounts of 7-OH and mitragynine pseudoindoxyl will be legally allowed in tablets, gummies and liquid shots (1 mg per serving). A 100 to 1 ratio of mitragynine to the other alkaloids – what occurs in nature – must also be preserved. 

AKA Lawsuit Withdrawn

The new DEA order amounts to a major legal victory for the AKA, and comes at the expense of 7-OH manufacturers and vendors, whose products were taking a substantial amount of business away from leaf kratom vendors. 

“We made an agreement to dismiss our lawsuit, but it's conditioned on their publishing under the schedule that they submitted to the court,” said Haddow. “The thresholds draw the line the AKA has been asking for, targeting chemically manipulated opioid products while protecting natural kratom leaf that may contain only incidental trace amounts of these compounds.”

Not surprisingly, 7-OH manufacturers and consumers were disappointed by the DEA’s new order, but held out hope that changes could be made before November 13. Tens of thousands of Americans use 7-OH to relieve their pain, anxiety and fatigue, allowing them to work, care for family, and stay away from more dangerous substances. 

“This is still a Notice of Intent, not a scheduling order,” the 7-HOPE Alliance said in a note to advocates. “It gives us more time to fight, more time to negotiate with the administration, more time that consumers can safely access products they rely on.

“The revised proposal would still threaten access to 7-OH products. We do not agree with how these new thresholds are being set. Once again, this approach favors certain product categories over others without fully considering the consumers who depend on them.”  

While leaf kratom remains legal under federal law, it has been banned by dozens of states, cities and counties. The AKA hopes those local jurisdictions follow the DEA’s example, by taking leaf kratom out of their wholesale bans on 7-OH and other kratom derivatives.

 

Three U.S. Senators Call for FDA Regulation of Leaf Kratom

By Pat Anson

Three U.S. Senators are calling on the FDA and DEA to regulate the “entire kratom plant” under the Controlled Substances Act, a step that far exceeds current plans by the DEA to classify concentrated forms of the kratom alkaloid 7-hydroxymitragynine (7-OH) as illegal Schedule One controlled substances.

Sen. Chuck Grassley (R-Iowa), chair of the powerful Senate Judiciary Committee, initially said in a post last week on Twitter/X  that “All Kratom is deadly” and that it “is killing our kids BEWARE of special interest snake oil.”

The 93-year old Grassley was joined this week by two other U.S. senators, Sen. Mike Lee (R-Utah) and Sen. Susan Collins (R-Maine) in a joint letter to the DEA administrator and acting FDA commissioner calling for the immediate scheduling of 7-OH and to “consider scheduling the entire kratom plant.”

“We urge the Food and Drug Administration to conduct the necessary scientific and medical evaluations of these substances and provide a permanent scheduling recommendation to the Drug Enforcement Administration for the full kratom plant, its derivatives, and all levels of the semi-synthetic analogues like mitragynine pseudoindoxyl, MGM-15, and MGM-16 that are being marketed as natural products.”

The DEA, in fact, has already scheduled mitragynine pseudoindoxyl, MGM-15 and MGM-16 – synthetic forms of kratom alkaloids – as Schedule One controlled substances. 

The agency announced plans to schedule 7-OH in July, but has delayed implementing the order at the request of the Department of Health and Human Services (HHS), to allow more time for public comment on the appropriate threshold level of 7-OH that would still be legally allowed. 

(Update: The DEA now intends to implement the ban on November 13.)

Nearly 36,000 public comments were made in the Federal Register, most of them opposed to the DEA’s plan to set a limit of 1 mg per 7-OH tablet, gummy or shot, saying there is no evidence to support it.   

Confusion Over Letter

“I think there is a tremendous amount of confusion about the letter,” said Mac Haddow, a spokesman and lobbyist for the American Kratom Association (AKA), an advocacy group for leaf kratom vendors. “I know for a fact that Senator Lee does not agree with the request that all natural kratom be scheduled.”

In talking with Judiciary Committee staff about the letter, Haddow said there were “misunderstandings” about the differences between 7-OH and leaf kratom, and confusion about how the substances might be regulated under the Controlled Substances Act (CSA). 

Kratom comes from the leaves of a tree that grows in Southeast Asia, where it has been used for centuries as a stimulant and pain reliever. 7-OH occurs naturally in kratom in trace amounts, but manufacturers have recently found ways to concentrate the alkaloid in 7-OH products, turning a mild pain reliever into a more potent one that has opioid-like effects.  

The AKA maintains that 7-OH and other concentrated alkaloids are synthetic opioids created in a lab that have no relation to leaf kratom. The AKA supports the scheduling of 7-OH, but wants leaf kratom left alone.  

“I know where Mike Lee is on this, and my understanding is he didn't agree with the premise of that letter at all, and maybe because he's out of town, didn't read it carefully,” Haddow told PNN. “But that’s neither here nor there, the letter's written. I hope they rescind it and they give a more detailed analysis of what they really want.” 

Haddow said the Judiciary Committee staff, which likely wrote the letter, thinks leaf kratom should be classified under the CSA as a Schedule Two or Three substance that could be used for medical purposes. But that requires the approval of the FDA, which has long maintained that kratom is not approved for any medical condition.

“You can schedule FDA-approved drugs in any of those schedules,” explained Haddow. “But you can't take one that doesn't have a drug approval and schedule it anywhere but Schedule One. And they didn't even know that, so that was surprising to me. You'd think the Judiciary staff would understand the Controlled Substance Act better than that, but maybe I misunderstood them. But I don't think I did.”

If what Haddow says is accurate, it’s a surprising level of ignorance, as the Senate Judiciary Committee oversees the U.S. Justice Department, DEA, FBI and Department of Homeland Security. The DEA is the primary agency responsible for enforcing the CSA.   

It’s not the first time Haddow has encountered confusion at the federal level about kratom and its derivatives. In August, he told PNN there was “enormous confusion among some members of Congress and even staff at the DEA” about the differences between leaf kratom, 7-OH, and other kratom alkaloids. 

He fears that confusion could lead to all kratom related products being scheduled or banned – including leaf kratom –  which is exactly what the Grassley, Lee and Collins letter is proposing.  

The American Medical Association (AMA) also supports the regulation of leaf kratom and kratom derivatives.  In June, the AMA’s House of Delegates passed a resolution calling for a complete ban on 7-OH and recommended that kratom be scheduled under the CSA after the FDA evaluates its safety and efficacy through clinical trials — a process that could take several years. 

Until that happens, the AMA says kratom should not be “marketed or prescribed as treatment for any condition.”