How To Get More Pain Relief From Rx Opioids

By Drs. Forest Tennant, Martin Porcelli and Scott Guess

Due to a multitude of legal restrictions and biases, many persons living with pain who take opioid medication can’t get enough relief to function, be comfortable, and have quality of life.

Summarized below are some of the ways we have found to boost or enhance the pain-relieving effect of prescription opioids.

Take a Booster (Potentiator)

Opioids trigger the endorphin receptor to relieve pain. If you simultaneously take a medicine or supplement that triggers a different receptor or suppresses inflammation, pain relief is enhanced. This boosting effect is the reason opioids are combined with acetaminophen or aspirin in pain medications such as Vicodin or Percocet.

Here is a list of potential non-prescription boosters. You may have to experiment to find one or two that boost the potency of your opioid. You can swallow the booster with your oral opioid or take the booster within 15 minutes after taking the opioid.

• Taurine 1000 mg

• Glutamine 1000 mg

• Lion’s Mane mushrooms

• Quercetin

• Benadryl

• St. John’s wort

• White willow bark

• Cannabidiol (CBD)

• Kava

• Palmitoylethanolamide (PEA) 300 to 600 mg

Under the Tongue vs Swallowing

A medication dissolved under the tongue (sublingually) is always more potent than if you swallow it whole. That’s because digestion in the stomach and intestines may wipe out as much as 50% of an oral opioid’s pain relief capability.

Try dissolving an opioid tablet under your tongue. You may find it much more effective, as it will enter the bloodstream faster. We recommend starting with half your usual dose and increase it as needed, being careful not to exceed your usual dose. Discuss this practice with your medical practitioner.

Don’t Forget Aspirin

Aspirin has been disparaged to the point that people are afraid to take it. It is still one of the very best opioid boosters. Dissolve it under your tongue to avoid stomach upset or bleeding.

Receptor Health

The central nervous system has many receptors (“action points”) that relieve pain. They need to stay healthy and active to provide maximal pain relief. A good nutrition program that consists of daily protein, vitamin D, and magnesium helps keep nerve receptors healthy and maximizes opioid pain relief.

Bedtime Preparation

Some medicinals taken at bedtime have the effect of making the next day’s opioids more effective. Here are some suggestions:

• Metformin 500 mg + L-Theanine 200 mg

• Tryptophan 500 to 1000 mg

• Amitriptyline

• Pentoxifylline

Cannabis

Some persons find that cannabis provides significant pain relief, while others experience little or no relief.

Do not take cannabis products within four hours before or after an opioid dosage to avoid over-sedation, loss of coordination, and mental deficiency.

Kratom

Kratom is the only non-prescription herbal supplement that has opioid-like effects. It comes in a variety of forms, usually natural leaf powder that is sold in capsules, edibles or drinks.

Kratom can be simultaneously taken with opioids, but be wary of synthetic or concentrated kratom as its potency may be unknown or too high.

All persons who take opioids for pain relief should find a kratom form and dosage that relieves pain. Given today’s adverse attitudes and restrictions on opioids, a person relying on prescription opioids alone must face the fact that their medical practitioners may end or reduce their opioid therapy at any time. When this happens, you may have to rely on kratom.

Prescription Boosters

Many physicians prescribe non-opioid medications for pain relief, such as gabapentin (Neurontin), clonidine, tizanidine, baclofen, and pregabalin (Lyrica). These can also be used to boost the potency of opioids. Take these medications within four hours before or after your opioid dose.

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

Martin J. Porcelli, DO, is a family medicine doctor in Pomona, CA and is affiliated with Casa Colina Hospital.

Scott Guess, PharmD, operates an independent pharmacy and clinic in Atascadero, CA that specializes in pain management and arachnoiditis.

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

7 Tips to Help Fight a Health Insurance Denial

By Lauren Sausser, KFF Health News

When Sally Nix found out that her health insurance company wouldn’t pay for an expensive, doctor-recommended treatment to ease her neurological pain, she prepared for battle.

It took years, a chain of conflicting decisions, and a health insurer switch before she finally won approval. She started treatment in January and now channels time and energy into helping other patients fight denials.

“One of the things I tell people when they come to me is: ‘Don’t panic. This isn’t a final no,’” said Nix, 55, of Statesville, North Carolina.

To control costs, nearly all health insurers use a system called prior authorization, which requires patients or their providers to seek approval before they can get certain procedures, tests, and prescriptions.

Denials can be appealed, but nearly half of insured adults who received a prior authorization denial in the past two years reported the appeals process was either somewhat or very difficult, according to a July poll published by KFF, a health information nonprofit that includes KFF Health News.

“It’s overwhelming by design,” because insurers know confusion and fatigue cause people to give up, Nix said. “That’s exactly what they want you to do.”

The good news is you don’t have to be an insurance expert to get results, she said. “You just need to know how to push back.”

Here are tips to consider when faced with a prior authorization denial:

1. Know your insurance plan

Do you have insurance through your job? A plan purchased through healthcare.gov? Medicare? Medicare Advantage? Medicaid?

These distinctions can be confusing, but they matter a great deal. Different categories of health insurance are governed by different agencies and are therefore subject to different prior authorization rules.

For example, federal marketplace plans, as well as Medicare and Medicare Advantage plans, are regulated by the U.S. Department of Health and Human Services. Employer-sponsored plans are regulated by the Department of Labor. Medicaid plans, administered by state agencies, are subject to both state and federal rules.

Learn the language specific to your policy. Health insurance companies do not apply prior authorization requirements uniformly across all plans. Read your policy closely to make sure your insurer is following its own rules, as well as regulations set by the state and federal government.

2. Work with your provider to appeal

Kathleen Lavanchy, who retired in 2024 from a job at an inpatient rehabilitation hospital in the Philadelphia area, spent much of her career communicating with health insurance companies on behalf of patients.

Before you contact your health insurer, call your provider, Lavanchy said, and ask to speak to a medical care manager or someone in the office who handles prior authorization appeals.

The good news is that your doctor’s office may already be working on an appeal.

Medical staffers can act as “your voice,” Nix said. “They know all the language.”

You or your provider can request a “peer-to-peer” review during the appeals process, which allows your doctor to discuss your case over the phone with a medical professional who works for the insurance company.

3. Be organized

Many hospitals and doctors use a system called MyChart to organize medical records, test results, and communications so that they are easily accessible. Similarly, patients should keep track of all materials related to an insurance appeal — records of phone calls, emails, snail mail, and in-app messages.

Everything should be organized, either digitally or on paper, so that it can be easily referenced, Nix said. At one point, she said, her own records proved that her insurance company had given conflicting information. The records were “the thing that saved me,” she said.

“Keep an amazing paper trail,” she said. “Every call, every letter, every name.”

Linda Jorgensen, executive director of the Special Needs Resource Project, a nonprofit offering online resources for patients with disabilities and their families, has advised patients who are fighting a denial to specifically keep paper copies of everything.

“If it isn’t on paper, it didn’t happen,” she said.

Jorgensen, who serves as a caregiver to an adult daughter with special needs, created a free form you can print to help guide you when taking notes during phone calls with your insurance company. She advised asking the insurance representative for a “ticket number” and their name before proceeding with the conversation.

4. Appeal as soon as possible

The silver lining is that most denials, if appealed, are overturned.

Medicare Advantage data published by KFF in January found that nearly 82% of prior authorization denials from 2019 through 2023 were partially or fully overturned upon appeal.

But the clock is ticking. Most health plans give you only six months to appeal the decision, according to rules laid out in the Affordable Care Act.

“Don’t dillydally,” Jorgensen advised, especially if you’re sending a paper appeal, or any supporting documents, through the U.S. Postal Service. She recommends filing quickly, and at least four weeks before the deadline.

For the sake of speed, some people are turning to artificial intelligence for help crafting customizable appeal letters.

5. Ask your HR department for help

If you get your health insurance through an employer, there’s a good chance your health plan is “self-funded” or “self-insured.” That means your employer contracts with a health insurance company to administer benefits, but your employer shoulders the cost of your care.

Why does that matter? Under self-funded plans, decisions about what is or isn’t covered ultimately rest with your employer.

Let’s say, for example, your doctor has recommended that you undergo surgery, and your insurer has denied prior authorization for it, deeming the procedure “not medically necessary,” a phrase commonly used. If your plan is self-funded, you can appeal to the human resources department at your job, because your employer is on the hook for your health care costs — not the insurer.

Of course, there’s no guarantee your employer will agree to pay. But, at the very least, it’s worth reaching out for help.

6. Find an advocate

Many states operate free consumer assistance programs, available by phone or email, which can help you file an appeal. They can explain your benefits and may intervene if your insurance company isn’t complying with requirements.

Beyond that, some nonprofit advocacy groups, such as the Patient Advocate Foundation, might help. On the foundation’s website is guidance about what to include in an appeal letter. For those battling severe disease, foundation staffers can work with you one-on-one to fight a denial.

7. Make noise

We’ve written about this before. Sometimes, when patients and doctors shame insurers online, denials get overturned.

The same holds when patients contact lawmakers. State laws regulate some categories of health insurance, and when it comes to setting policy, state lawmakers have the power to hold insurance companies accountable.

Reaching out to your legislator isn’t guaranteed to work, but it might be worth a shot.

Finally, if you’re interested in sharing your experiences with a journalist, fill out this form. We’d like to hear from you.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

How Well Does Your Doctor Listen?

By Carol Levy

In addition to my trigeminal neuralgia, I also have many side effects from various surgical procedures. It’s bad enough that trigeminal neuralgia is considered a “rare” disorder, but mine is from an even more rare birth defect. Add to that facial paralysis and phantom pain, and I am a very rare duck indeed.

My cornea specialist acknowledged this recently, when I asked him about an issue with my eye.

“Most patients do fine. But there's no one else like you. So with you, I just don't know,” he said.

It’s been years since I’ve had trigeminal neuralgia “tics.” The trigeminal nerve was cut and burned surgically to stop the “tics” from occurring. But lately I've been getting new facial pain, so I asked my neurologist if the nerve could be growing back.

She shrugged her shoulders and said, “I don’t know.”

I appreciate it when a doctor is honest. They don't like to admit or show uncertainty. After all, they're the experts. They need to be able to give an answer to the question that often haunts us and sends us to them in the first place: “What is this?”

To say “I don't know” is probably very difficult for them.

Unfortunately, for many of us, instead of an honest answer, we get pats on the head and platitudes: “It's anxiety. Calm down and relax. Your pain will get better.”

Sometimes we get disbelief: “I don't believe you have pain. Your story isn't right.”

Some basically tell us to go away and not bother them anymore.

And then doctors wonder why patients have lost trust in them.

Patients complain rightfully when a doctor spends most of the appointment on the phone or looking at their laptops. Sometimes, if they bother to look up, they’ll say, “I'm looking into a medication I think may help.” 

Okay, that's good. He's researching so he can prescribe the right thing. But couldn't he have said something before he turns to his phone?

“I need to do some research,” the doctor could say. “I want to be sure I have the right diagnosis and prescribe the right drug. I can call you or see you again if necessary.”

I might be annoyed by that. After all, I'm leaving the office with no diagnosis or prescription. But it's preferable to the wrong diagnosis or the wrong medication. Waiting for the phone call or going back to the office to get what I need is preferable to being treated for the wrong thing or with a medication that doesn't work.

But it doesn't negate the feeling that "he never looked at me."

This has gotten worse in the digital age. They don't look at us, they are often more focused on the computer. Supposedly that helps them take notes and write a thorough report as they conduct an exam. But how many times have you seen the report? Is it rife with errors, things you never said, or exams never done?

I have read a number of articles that put the blame for this on the insurance companies. They require all health records to be stored electronically (EHR), so a doctor has to look at his computer.

But, having to comply with that requirement does not impose an inability to look your patient in the eye, to show interest, empathy and caring. That is not the insurance company's mandate. That should be the mandate for good doctoring

I’ve also seen articles where the blame is placed on the media. They only report on the bad doctors, never the good ones.

I have never imagined my doctor wearing a magical cape or having phantasmagorical powers. I could care less what the media shows. I only care about my doctors and how honest they are with me.

Sadly, too many of them are encased in an armor that pushes us away, that makes us distrust them. It’s the turnabout of the old breakup adage: It's not me, it's you.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 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.  

Awake, Not Woke: How Politics in Medicine Harms Patients

By Dr. Lynn Webster

Somewhere between facts and social media, “woke” -- a perfectly good word for being awake to reality -- got transmogrified into a slur. If that alchemy puzzles you too, consider this brief field manual for the Anti-Alarm-Clock Caucus: a how-to on mistaking earplugs for policy and empathy for extremism.

Culture-war rhetoric chills evidence-based care and worsens outcomes. Let me explain what we should do instead. 

If you’ve ever sat with someone who was in real pain, you know how brittle the anti-woke script sounds in exam rooms. Patient-centered conversation becomes suspect; motivational interviewing gets mocked as coddling; and a clinician trying to tailor a taper to a patient’s specific needs is accused of ideology.

The risk isn’t a bruised ego -- it’s disengagement. People clamp down, under-report substance use, skip follow-ups, and show up again only when they’re much sicker.

The irony is stark: even the critics who rail at “woke medicine” still rely on the public health infrastructure they deride when it’s time to manage the fallout.

Here’s the magic trick they perform: They rebrand attentiveness as excess and turn “be aware of harm” into “behold the woke mind virus.” Once they frame awareness as contagion, politicians can sell indignation like energy drinks. Any medical practice that looks like it’s noticing the individuality of a patient -- bias training, person-first language, or trauma-informed care -- gets dismissed as ideology, rather than craft.

Because they like to think of themselves as honorable, they follow a set of prescribed rules including:

Rule #1: Relabel Compassion as “Coercion”

When a clinic swaps “addict” for “person with a substance use disorder” because it reduces stigma and improves engagement, they accuse the “word police” of forcing the change in nomenclature. Opposing any sign of empathy requires less energy than reading the literature and seems far more satisfying than measuring outcomes.

If they made the effort, they would know that the National Institute on Drug Abuse (NIDA) advises using person‑first, non‑stigmatizing language -- e.g., “person with a substance use disorder” rather than “addict” -- to reduce bias in clinical care.  

In fact, in the International Journal of Drug Policy, John Kelly and Cassandra Westerhoff reported that the term “substance abuser” prompts more punitive judgments against the patient, even when trained mental health professionals are involved.

Rule #2: Recode Lifesaving Tools as Culture War

Naloxone, syringe services, and overdose prevention centers are tedious in one way: they work. So, label them “woke enabling” and starve them of funding. It saves leaders from saying the quiet part out loud -- “I oppose what works” -- while ensuring the body count stays offstage.

The CDC reports that Syringe Services Programs (SSPs) are “safe, effective, and cost-saving” and “do not increase illegal drug use or crime.” Access to and disposal of sterile syringes that won’t be reused is associated with a 50% reduction in HIV/HCV incidence. The reduction exceeds two‑thirds when combined with medications for OUD. HHS adds that harm reduction is “critical to keeping people who use drugs alive.”

In Massachusetts, communities implementing overdose education and nasal naloxone distribution (OEND) programs saw a 27% lower opioid overdose death rate at modest program scale and a 46% lower death rate at higher scale compared to communities without OEND.

Rule #3: Flatten Complexity Into Blame

Fentanyl potency, housing collapse, and workforce shortages are complex, unglamorous problems. “Woke drug policy failed” fits easier on a bumper sticker.

When Oregon struggled amid a fentanyl wave, the vibe merchants -- outrage marketers who sell mood over evidence -- declared drug decriminalization to be the villain.

But nuance seldom survives a fact check. The best evidence to date is that Oregon’s decriminalization of small amounts of drugs in 2020 was not associated with an increase in fatal overdoses after accounting for fentanyl’s spread. Oregon later recriminalized possession in 2024, even though state health officials reported a 22% decrease in overdose deaths in the prior year.

On the street, cruel rhetoric cues policy. Call overdose prevention centers “ideological” and it becomes simpler to shutter them than to count the lives they save. Smear syringe services as permissive, and you can cut programs that prevent HIV and hepatitis C, while claiming fiscal prudence.

Mock “harm-reduction spending” and you can bury the line item without ever debating the outcomes. From 2019 to 2022, New York City’s Opioid Prevention Centers (OPCs) resulted in no significant increases in violent or property crime, 911 calls, or 311 calls for drug use after opening.

Similarly, Vancouver, Canada reported a 35% reduction in overdose mortality rates after the opening of North America’s first supervised injecting facility.

Inside healthcare systems, the anti-woke script causes harm. Clinicians already practicing under surveillance and time pressures learn to avoid nuance with patients, resulting in less motivational interviewing, fewer shared decisions, and more default suspicion. The clinical vocabulary hardens, and patients pick up on it the way they would the weather.

When language gets sharper, so do consequences -- patients disclose less, absorb less, and leave treatment sooner. NIDA’s guidance exists precisely to counter those effects.

The Anti-Theatrical Fix: What Actually Works

The fix is simple. The antidote to anti-woke drama is being awake.

Call things what they are: naloxone reverses overdoses, syringe programs prevent infections, and supervised drug consumption reduces death and connects people to care. That’s not a worldview, it’s reality.

Use words that keep doors open instead of closing them. Person-first language is stigma hygiene, not a lifestyle brand. Judge policies by outcomes and timelines rather than outrage cycles. If the curve bends where capacity expands and supply is stabilized, then fund capacity and stabilize supply.

Retire spin peddlers as culture-war props. Federal judges noted that an anti-woke law in Florida crossed constitutional lines, ruling that “viewpoint discrimination is inherent in the design and structure of this Act.”

We could even try a fascinating (or, perhaps, boring to some) experiment in courage: let leaders earn applause for actions that quietly work, instead of things that loudly sting. Pay clinicians for patient-reported function, not for performing moral panic. Reward programs that shrink infections and deaths, not those that inflate arrest numbers. And when someone tries to sell you an anti-woke policy branded as “toughness,” ask to see the data, the denominator, and the deaths averted.

If you need a slogan, Gov. Ron DeSantis already gave you one and it just proves the point: “We will never surrender to the woke mob. Florida is where woke goes to die.”

None of this requires everyone to be “woke” or to join a mob. It requires us to be awake. The linguistic jujitsu that turned woke into a boo-word lets leaders score easy points, while patients lose hard chances.

You can see the toll in the quiet statistics, but you can also hear it in the voices that don’t come back, including the patient who won’t return after being called an unkind name; the parent who stops carrying naloxone because a lawmaker sneered at “harm-reduction spending”; and the person who overdoses in a locked bathroom because a supervised site was branded as “ideology.”

Be awake to patients and outcomes; let data, not drama, guide healthcare.

Lynn R. Webster, MD, is a pain and addiction medicine specialist and serves as Executive Vice President of Scientific Affairs at Dr. Vince Clinical Research, where he consults with pharmaceutical companies. He is the author of the forthcoming book, “Deconstructing Toxic Narratives–Data, Disparities, and a New Path Forward in the Opioid Crisis,” to be published by Springer Nature. Dr. Webster is not a member of any political or religious organization.

What Having Chronic Pain Teaches You About Doctors

By Crystal Lindell

There’s an old story often shared in my family about my great uncle Jim. It’s a story I’ve heard since I was a kid, as a warning. 

You see, when Jim was 39 years old, he was told to take “heart medication.” 

But Jim felt fine, so he ignored the doctor’s orders and never took the pills. And then, one night, while his wife – my aunt Sylvia – was watching TV, Jim went upstairs, fell asleep and died. He never even made it to his 40th birthday. 

I never met Jim, but his early and unexpected death sent shock waves through generations of my family. And his story eventually morphed into family folklore, where the moral was that if a doctor gives you medication, you need to take it. 

It is with this mindset that I first approached my doctor appointments back in 2013 when I developed chronic pain in my right ribs. 

I didn’t know the cause – and to be honest, I still don’t really know for sure how it started – but I did know that I was in a lot of pain, and I was very scared. 

So when the doctors started loading me up with prescriptions, I filled every single one of them. Within a couple months, I had a line of pill bottles and patches on my nightstand spanning everything from gabapentin and amitriptyline to lidocaine and other medications I can’t even remember now. 

And I took all of them exactly as prescribed. 

The only problem was, the lessons of the past did not apply to my situation. The medications were prescribed by a team of doctors who were just throwing stuff at the wall to see if anything would stick. 

Taking them in combination caused horrible side effects. I was always on the verge of falling asleep, and I started gaining weight so fast that my clothes would stop fitting in the span of a week. 

Not to mention the fact that they also weren’t even doing the one thing I needed: None of them were helping my chronic pain. 

It wasn’t until I eventually went to the Mayo Clinic about a year later that I realized the flaws in my logic.

It was there that a doctor told me to just stop taking half the medications I was on. When I questioned her, she was shocked that I had not thought to stop any of them sooner. 

It sounds naive in retrospect, but that was the first time I started to realize that doctors were not gods. And that doctors are sometimes guessing when it comes to treatments.

It was a lot to process, because it also meant that I had to reckon with the fact that I could no longer just blindly follow whatever treatment they were giving me. Rather, I was going to have to figure out a lot of this for myself. 

There’s a common myth that if you ever get sick, a doctor will save you. But when you develop any sort of chronic health condition, you realize that doctors are just humans too. They come into appointments with prejudices, egos, bias, and flawed information. They also often disagree with other doctors.

This can be extremely difficult to navigate because when it comes to your health, a lot of treatments really are about life or death. And filtering out which ones are life and which ones might be death is dangerous business. Doctors are definitely needed to guide us, but they can’t be relied upon to do it alone. 

There’s an old saying about doctors: “There’s a reason they call it a practice.” Even doctors are still learning about the complexity of our bodies. Because as I said, they are not gods, and as such, they can’t be relied upon to be our saviors. 

In the end, we have to save ourselves. 

It’s not quite as comforting to see the world that way, with the knowledge that nobody is coming to save us. But it’s more realistic. And a lot more likely to actually save you. 

Rising Health Insurance Costs Should Cause Americans More Alarm

By Elisabeth Rosenthal, KFF Health News

Wary of inflation, Americans have been watching the prices of everyday items such as eggs and gasoline. A less-noticed expense should cause greater alarm: rising premiums for health insurance. They have been trending upward for years and are now rising faster than ever.

Consider that, from 2000 to 2020, egg prices fluctuated between just under $1 and about $3 a dozen; they reached $6.23 in March but then fell to $3.78 in June. Average gas prices, after seesawing between $2 and $4 a gallon for more than a decade starting in 2005, peaked at $4.93 in 2022 and recently fell back to just over $3.

Meanwhile, since 1999, health insurance premiums for people with employer-provided coverage have more than quadrupled. From 2023 to 2024 alone, they rose more than 6% for both individuals and family coverage — a steeper increase than that of wages and overall inflation.

For many people who have the kind of insurance plans created by the Affordable Care Act (because they work for small companies or insure themselves), rates have probably risen even more drastically. In this market, state regulators scrutinize insurers’ proposed rate increases, but only if they exceed 15%.

And the situation is about to get worse: For 2026, ACA marketplace insurers have proposed eye-popping new prices: In New York, UnitedHealthcare has proposed a 66.4% rise. HMO Colorado has asked for an average increase of more than 33% in that state. In Washington, the average proposed increase across all insurers is 21.2%, and in Rhode Island it’s 23.7%.

According to Business Group on Health, a consortium of major employers, “actual health care costs have grown a cumulative 50% since 2017.” In a separate survey published in 2021, 87% of companies said that in the next five to 10 years, the cost of providing health insurance for their workers would become “unsustainable.”

And insurers in the ACA marketplace are increasing premiums by an average of 20% for next year, according to a new analysis. Imagine if tens of millions of Americans’ rent or mortgage payments were to suddenly increase by that amount.

Insurance regulators theoretically could demand that these proposed rates be lowered — and this often happens. But some states are more active than others in this regard. And all are wary that too much regulatory interference could drive insurers from their markets.

Insurers offer many explanations for their calculations, some of which are tied to recent actions by Congress and President Donald Trump. New tariffs on America’s trading partners, for example, are expected to push up the cost of drugs and medical supplies.

Meanwhile, reductions in health care spending included in the GOP budget bill, along with the expiration of some Biden-era premium subsidies at the end of this year, will cause many people to lose their health insurance. About 16 million Americans are expected to become uninsured by 2034, in many cases because keeping insurance will become unaffordable.

Because most of these people are likely to be young and/or healthy, the “risk pool” of those remaining insured will become older and sicker — and therefore more expensive to cover.

“Ultimately, we believe the ACA market will likely be smaller and higher acuity-driven next year,” Janey Kiryluik, vice president of corporate communications for Elevance Health (formerly known as Anthem), wrote in an email. She added: “Our position reflects early disciplined action.”

Remember, most insurers in the United States are public, for-profit companies; as such, they tend to act in the interests of their shareholders, not the patients whose health care they cover.

Large employers that manage their own health care plans might be able to negotiate better deals for their workers. But smaller companies, for the most part, will need to accept what’s on offer.

Premiums are not the only part of health insurance that’s getting more expensive. Deductibles — the money that beneficiaries must spend out-of-pocket before insurance kicks in — are also rising. The average deductible for a standard ACA silver plan in 2025 was nearly $5,000, about double what it was in 2014. (For those with employer-based insurance, the average number is just under $2,000.)

A few states are trying to stem the tide by offering a state-run “public option,” a basic affordable insurance plan that patients can choose. But they have struggled because a lower payment rate for workers generally means fewer participating providers and reduced access to care.

If voters paid as much attention to the price of health insurance as they do to the cost of gas and eggs, maybe elected officials would respond with more action.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

The Strange Denial of Complications Caused by Poorly Treated Pain

By Drs. Forest Tennant and Scott Guess

There has been no shortage of controversy, scandal and fraud regarding the opioid and pain crises of the past decade. One standout in the debate over opioids and pain treatment has been a lack of an honest, objective discussion of the benefits of pain care.

A basic tenet in medical practice and therapeutics is what is called the “risk-benefit” ratio. This is a simple analysis of whether a specific drug or therapeutic measure has more benefit than risk.

For example, the risk-benefit of drugs taken during pregnancy is well-known and established. But strangely, the debate over whether opioids have more benefit than risk in the treatment of pain has never been broached.

None of the parties involved, especially the anti-opioid zealots, will discuss any benefit that opioids may bring. In fact, essentially their only discussion is that opioids are a risk for overdose and addiction, so they have no benefit and shouldn’t be used.  

This risk is overrated and overstated in relation to opioids prescribed and monitored by a physician. According to the CDC, total opioid overdose deaths in the US (including deaths from illicit opioids) were 24 deaths per 100,000 population in 2023.

That compares to the overdose death rate for prescribed opioids, which was 4 per 100,000 population. That is a raw number for prescribed opioids.  Some data reports opioid deaths among physician monitored chronic pain patients to be as low at 0.1 per 100,000 population. 

In other words, the overdose risk of evidence with prescription opioid is minuscule.

Pain has a number of pathological complications that benefit from opioid therapy. In addition to physical relief, there are humanitarian benefits, such as a reduction in suffering, and the ability to mentally and physically function as a productive person.

When poorly treated or left untreated, chronic pain has profound negative and deleterious effects on the cardiovascular and endocrine (hormonal) systems. Pain puts the cardiovascular system into overdrive, which raises blood pressure and pulse rates. Coronary artery spasm may also result from severe chronic pain.

We can personally attest to prescribing blood pressure medication and nitroglycerin to many pain patients at risk of cardiac arrest or heart failure.

Hormonal suppression and deficiency of cortisol, testosterone, estradiol and other hormones are also common in undertreated chronic pain patients. Cortisol levels can drop below levels that sustain life. We have administered emergency cortisone to pain patients who were severely ill, debilitated, and near collapse because they had inadequate cortisol levels.

Among Dr. Thomas Addison’s eleven reported original cases of Addison’s Disease in 1855, about half had serious intractable pain conditions such as adhesive arachnoiditis.

Chronic pain has also been found to alter blood glucose and lipids (cholesterol). Sleep deprivation is another major problem in pain patients.  And anorexia with malnutrition is common.

Given the medical complications induced by pain, one would logically think that there would always be a discussion of risk-benefit when discussing opioid therapy. But we’ve never heard or seen such a discussion in medical literature or in political circles.

As if denial of benefits over risks weren’t bad enough, an even stranger denial has occurred. We have searched the major medical textbooks used in medical schools today, and couldn’t find a single word that chronic pain is a risk for hypertension and cardiac disease, much less hormonal deficiencies.

Isn’t it time we quit denying that chronic pain has medical complications that can be easily treated with opioids and other medicinals? The risks of opioid therapy simply don’t outweigh the benefits. 

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

Scott Guess, PharmD, operates an independent pharmacy and clinic in Atascadero, CA that specializes in pain management and arachnoiditis.

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

When Headlines Lie: Misleading News About Opioids and Chronic Pain

By Neen Monty

The headline in Physician’s Weekly screams alarm:

“Rising Use of Potent Opioids in Chronic Pain Management”

And then the sub heading:

“Long-term opioid use for chronic pain doubled, with potent opioids rising, underscoring the need for stronger guideline adoption”

Terrifying, right? We must do something!

But now, read the article. It’s based on a study recently published in the European Journal of Pain on the prevalence of long-term opioid therapy (LTOT) when treating patients with chronic non-cancer pain.

The Dutch study looked at opioid use over a ten-year period, from 2013 to 2022, using a large dataset drawn from primary care records in the Rotterdam region. This database covered more than half a million patients and included data from over 240 general practitioners.

The researchers focused on adults aged 18 and over who had been prescribed opioids continuously for at least three months. They tracked how common LTOT was over time, and also explored which diagnoses, co-existing conditions, and other medications were associated with it. They reported their findings using basic descriptive stats and calculated LTOT prevalence per 100 patient-years to show trends over the decade.

And what did they find?

“The prevalence of LTOT increased twofold from 0.54% (95% CI: 0.51–0.58) per 100 patient years in 2013 to 1.04% (95% CI: 1.00–1.07) in 2022. The proportion of LTOT episodes solely involving potent opioids slightly increased between 2013 and 2022”

In plain English, the prevalence of long-term opioid use by patients at the end of the study was just over 1%.

Yes, that’s right: 1%.

And the prevalence increased by just half a percentage point over a decade.

Hardly a crisis. Hardly anything to scream about.

But we can’t have that! We need a clickbait headline to demonize opioids and stop their prescribing! So, instead of reporting accurately on the very small increase in opioid prescribing, they focus on the “twofold” increase. Trying to manufacture a crisis where there is none.

It’s true, the prevalence of LTOT did double, from half a percent to one percent. And that’s what the headline highlighted, to try and make it sound like there is an opioid crisis in Europe. There is not.

This tactic is often used in presenting medical research – using relative percentages rather than the actual numbers. That is because relative percentages -- “Opioid Use Doubled!” -- sounds worse than “Opioid Use Increased by Half a Percent.”

It’s a trick that researchers and the media use all the time.

Why do this? It’s dishonest. It’s deceptive. And it destroys our trust in science. They are trying to manufacture a crisis when there is none.

Why not research and report an actual crisis? Instead of making one up?

The Physician’s Weekly headline exemplifies the worst of scientific spin: inflating tiny fractional changes and omitting context. It potentially harms patients by reinforcing the myth that opioids don’t work long term and should be withheld. That myth persists because of misleading reporting like this.

Finally! An Honest Headline

It was nice to see some accurate reporting in Scimex, an Australian online news portal that tries to help journalists cover science. Instead of the usual deceptive, sensationalist headlines, this one tells the truth:

“Pain Reprocessing Therapy (PRT) could help those with mild chronic back pain”

This was so refreshing to see! Because it’s so very, very rare.

Most reporting on PRT glosses over a critical point: It has only been studied in people with mild, non-specific back pain. An average of 4 on the zero-to-10 pain scale.

That nuance is often lost in the hype about alternative treatments like PRT, cognitive behavioral therapy, mindfulness and TENS.

You do not treat 8/10 back pain the same way you treat 4/10 back pain.

What happens when people are misled about PRT? It gets recommended to people with severe, pathological pain — often with clearly identifiable causes — and everyone acts surprised when it doesn’t work.

Let’s be clear:

• PRT is not for severe back pain

• PRT is not for pain caused by pathology

• PRT is not a cure-all

But you wouldn’t know that from most headlines about PRT, such as “New therapy aims to cure back pain without drugs, surgery” and “A New Way to Treat Back Pain.”

Then you read the small print: All the participants in PRT studies had non-specific back pain from an unknown cause. And they had mild pain.

The researchers are often complicit, cherry-picking and hyping their own data. Why? Because they need funding. Because they’re writing a book. Because professors have to "publish or perish" to keep their jobs. Because it’s easier to mislead the public than to admit a therapy has limits. And you don’t get to be a guru if your therapy only works for a minority of patients with mild pain.

This kind of spin harms people with severe chronic secondary pain. It feeds the narrative that if you're still in pain, then it’s your fault. You didn’t try hard enough. You’re catastrophizing. You need to retrain your brain.

It feeds the stigma that all chronic pain is mild and easily curable. And that anyone who says their pain is severe has psychological problems.

No. Maybe their pain is caused by pathology, like tissue damage or herniated discs. Maybe their pain is nociceptive or neuropathic.

This is why chronic pain patients must be included on every research team. Someone with real-world, high-impact chronic pain would never let this kind of misrepresentation slide. And the rest of the team wouldn’t be able to claim ignorance.

We need more honesty and integrity in research and the media. We need headlines that reflect the actual findings. We need conclusions that match the data, not some predetermined narrative. Right now, most media coverage doesn’t even try.

Read the study, then read the headline. They rarely match. That’s how we ended up with a generation of healthcare providers who think opioids are bad, all chronic pain is primary pain, and that PRT is some miracle therapy.

It’s not. PRT may be helpful to people who are depressed or have anxiety, but should not be a first-line treatment for everyone. It’s only been tested in people with mild back pain for which there is no known physical cause. It has not been shown to work for people with severe pain or structural pathology.

But the researchers usually gloss over that. And the headlines and conclusions rarely reflect those facts or spell out who PRT is for and who it is not for.

Because here’s the truth: Pain Reprocessing Therapy is not a treatment for chronic pain. It’s a treatment for anxiety and depression.

That’s the real headline.

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

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Does Having a Diagnosis Change How You Are Treated?

By Crystal Lindell

A few months after I got my first official diagnosis of Ehlers-Danlos syndrome in 2018, I had an appointment with a new orthopedic doctor. 

I was having really bad pain in my left shoulder that I injured while on crutches, which I was using as a result of a foot injury. It felt like I couldn’t catch a break. 

There was a new EDS diagnosis on my patient intake form, which I assumed would be relevant in one way or another. I turned in the form and was led back to a patient room to go over all my symptoms with the nurse, before being left to anxiously wait in an overly air conditioned exam room to meet the doctor. 

When he finally walked in, he didn’t bother to say hello. In fact, before he even introduced himself, he looked up from my patient intake form, scanned me up and down, and said in an accusatory tone, “So. What makes you think you have Ehlers-Danlos syndrome?”

The question caught me off guard. I didn’t “think” I had EDS. I had literally been diagnosed by another doctor in the same hospital system a few months prior.

“Um, well, I was diagnosed by a doctor who works here, and my mom has it, my brother has it, my uncle has it, and my cousin has it.”

“Oh,” he replied, before hastily trying to move on. But the tone had already been set. Instead of it being a meeting between patient and caregiver, it had shifted to a meeting between patient and accuser.

For many years, I had assumed that having an official medical diagnosis would change how doctors treated me. I spent five years blindly struggling with a chronic pain that had no name, desperately searching for a diagnosis or cause. 

If only I had the validation of some sort of official medical diagnosis, then finally they would have to take me seriously. Or so I thought. 

But here I was, getting a crash course in why that wasn’t going to be the case. 

It turns out that doctors who try to dismiss you pre-diagnosis will also try to dismiss you post-diagnosis. 

I also assumed that if I had a “real” diagnosis, my family, friends and professional contacts would be more willing to accept the pain that had been plaguing me for years. 

But alas, that was not the case either. Explaining to them that I had Ehlers-Danlos syndrome resulted in zero changes in their behavior either. 

What I did find is that people who empathized with my chronic pain pre-diagnosis also empathized with my pain post-diagnosis. 

It turns out, it was never about the diagnosis.The people who sneered, judged and dismissed me before I knew I had EDS, continued to sneer, judge and dismiss me after I knew I had EDS too. 

Where before they would try to blame their behavior on my lack of a diagnosis, they just found new reasons after I did have one. Their justifications turned to things like blaming my weight, calling me lazy, and lamenting that if I really wanted to get better, I would try more treatments and take fewer opioids. 

I understand the personal toll it can take to deal with health issues without a diagnosis. And knowing that I have EDS helped me find online support groups and helped me better navigate my medical care. So I do fully support continuing the search for answers if you’re undiagnosed. 

But as a patient who spent years in pain, both with and without a diagnosis, I’m unfortunately here to report that finally getting one probably won’t change how most doctors and loved ones treat you. 

Because how they treat you has never been based on you – it was always just a reflection of themselves.

What Is Legitimate Pain?

By Dr. Forest Tennant

The question posed by the headline of this article may at first seem ridiculous or unneeded. But a definition of “legitimate pain” is really needed.

Federal government regulations require physicians to get a DEA license to prescribe opioids and other controlled substances. The prescribing must be for a “legitimate medical purpose” -- which is obviously intended to mean legitimate pain. 

It may be surprising, but the federal government doesn’t have a definition for legitimate pain.  State medical boards throughout the United States also do not define legitimate pain, although they monitor physicians for the “legitimacy” of their treatments. 

Recent history has shown that many physicians have been investigated and prosecuted for prescribing opioids without a “legitimate medical purpose,” despite the fact that there is no written definition of legitimate pain to be found in medical regulations and guidelines.

The lack of a written definition of legitimate pain has allowed wide discretion and abuse by prosecutors and their hired medical consultants, making it difficult for doctors to defend themselves against a system that is seemingly rigged against them.

Government agencies, medical boards, professional groups, and insurance plans also call pain “illegitimate” if they don’t like the treatment, dosage, brand, doctor, or cost. 

As unbelievable as it may sound, I’ve read and heard some terribly biased and ignorant definitions of what is and isn’t legitimate pain. 

For example, I’ve heard that a simple need for opioids makes pain illegitimate. The new definition of pain, according to some physicians, is really “opioid use disorder,” which requires treatment for addiction. I’ve also read that pain is a character deficiency and a natural part of life that needs no treatment.

There are some well-meaning persons who claim that pain is whatever the patient says it is. Sorry patients, there are simply too many addicts prowling doctor’s offices with detailed, fraudulent claims of pain fabricated to obtain opioids. Common sense and science tell us to “find the cause of pain before you prescribe.”   

It’s hard to believe, but the International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience.”  I can’t wait to ask United Healthcare and Medicare to pay for an expensive drug with this definition.

It is important to point out that the term “legitimate pain” is not only lacking in regulatory guidelines, but it is also not found in medical dictionaries.  Pain may be an experience, emotion or sensation, but it has historically been regarded as a symptom of an underlying disease or injury. 

For example, the Dunglison’s Medical Dictionary of 1874 says “pain is generally symptomatic.”  Medical practitioners today, however, need a new definition of pain because the term “legitimate” is now used to justify treatment with opioids and other controlled drugs. 

Here is my definition of pain, which I believe will generally satisfy all parties, including patients, practitioners, governmental bodies, insurance companies, and the media:

“A stressful symptom caused by a disease or injury that can be objectively identified by diagnostic tests or physical examination.”  

In the past, an argument was made that some causes of pain, such as fibromyalgia and headaches, can’t be objectively verified.  This may have been true in the past, but today’s technological advances in medical imaging and laboratory tests, along with a detailed physical examination, can objectively determine the cause of nearly every source of pain. 

An examination of my submitted definition not only implies that a medical practitioner has the right to treat the patient, it also implies that the practitioner has an obligation to treat both the pain and the cause. 

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

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

Living With Chronic Pain Teaches You to Ignore the Haters

By Crystal Lindell

When I first started having chronic pain in 2013, one of the major hurdles I faced was that I suddenly had a lot of trouble handling my full-time job. Doing a 90 minute commute each way, managing stress, traveling for conferences – all of it became infinitely more difficult. 

A lot of bosses probably would have immediately started to look for ways to let me go at that point, but I was lucky enough to have one who didn’t. He was an incredible mentor, friend and advocate for me – both within the company and with third parties. 

In fact, I would often rave about him to others, bragging about how empathetic and compassionate he was about the whole situation. 

A few years later, my boss started to have really bad knee pain, to the point that he eventually needed a knee replacement. 

Before he could have the surgery though, we had to cover a week-long industry conference at an exhibition hall together, and the whole experience left him very drained. He was suddenly experiencing chronic pain. 

Near the end of the week our team was having dinner, and he leaned over to tell me something. 

“I’m sorry I was not more compassionate to you about your health problems. It’s so awful. I go to bed tired, I wake up tired. The pain is always there. It’s horrible. I should have been nicer,” he told me.

I was stunned. 

This was someone who I had always categorized as being among the most compassionate about my chronic pain. And here he was – now faced with it himself – feeling as though he should have been even nicer. 

I always point to that story when I talk about why I don’t take it personally when others judge how I manage my life with chronic pain. Until you’ve been through it, it’s really hard to truly understand what it’s like to live with it – and what you’d do to make it stop. 

Even the most compassionate people often find that they were not compassionate enough. That it’s worse than they previously understood. 

And most people are not compassionate. On the contrary,  over the years a lot of people have been really judgemental about my health choices. People love to offer unsolicited advice, talk behind my back, and make rude comments like these: 

“She just wants to get high all day.”

“If you really wanted to get better you’d take up running/yoga/pilates and lose weight.”

“How bad could it be? She’s just lazy.”

But one thing I’ve noticed repeatedly is that when life hands them a health problem of their own, they are quickly humbled. 

People who thought I wasn’t doing enough to get better suddenly feel overwhelmed by something as routine as an MRI.

People who thought I took too many pain pills suddenly ask me for tips on how to get their doctor to prescribe pain medication. 

People who sneered at my kratom use suddenly want a tutorial on how to use it. 

People who called me childish for advocating for universal health care suddenly realize that the health insurance industry doesn’t care if they live or die. 

And people who thought I wasn’t doing enough to further my career quit their jobs and stopped working altogether. 

To be honest, I get it. It’s really hard to conceptualize a life with chronic pain or any chronic health issue until it happens to you. And it’s easy to judge how someone else is handling it. 

So when they are humbled, I never say “I told you so.” Instead, I offer sympathy, and whatever advice they ask for. 

And I tell them the most important thing you can tell someone with chronic pain: You are not crazy, you are not alone, and you can still live a very fulfilling life regardless of your health issues. 

Before that happens though, before they are humbled, when they are still healthy and offering judgements, I do something else – I ignore them. Because I know that no matter what they say, they wouldn’t handle my chronic pain any better than I do. 

To quote one of the most famous song writers of our generation: 

“Haters gonna hate, hate, hate, hate, hate. Baby, I'm just gonna shake, shake, shake, shake, shake. I shake it off, I shake it off.”

A Pained Life: When Disaster Strikes

By Carol Levy

I am watching a TV show. A tornado hits the main character's house. Suddenly, her house and all her possessions are scattered everywhere, broken and crushed, her house virtually demolished.

I watch as she looks through the detritus, more and more frantic in an effort to find something – anything -- that wasn't broken or totally destroyed.

“How can you recover from something like that? She lost everything,” I thought to myself.

My eyes start to tear up, my stomach clutches. This feels familiar.

Then it hits me. Trigeminal neuralgia did the same thing to me.

People often try to comfort disaster victims with heartfelt, but meaningless cliches: "You have your health" or "At least you're safe.”

The same words were said to me about my pain, even the line about still having my health. Well, yes, trigeminal neuralgia only caused severe pain to my face. The rest of me was physically whole. But was I healthy? No.

“There's always a chance they'll find something to help you,” was something else I heard -- even after 14 brain surgeries, including one that was 100% experimental. I have tried all there is to try. My neurosurgeon made that very clear to me.

This all started when I was 26, just beginning life. 

I wanted to be a singer.  The year before the pain began, I was in two musicals. It was in the lowest rung of professional theater, but it was what I wanted to do. The pay was less than what it cost me for the gas I used to get to the theater, but a paycheck is a paycheck.

With all my hopes and dreams of becoming a professional singer, and two whole shows on my resume, I packed my bags and moved to New York City, like so many other young people with the same dream.

For most of the first 6 months, I had a job as a receptionist. My boss promised me time off for auditions and classes. I was living my dream, holding the hope and fantasy of success in my hand.

Then, out of the blue, the pain started. Constant, spontaneous and triggered. Just a light touch from a wisp of hair could set it off. I didn’t know when the spontaneous pain would come, and had no control over the constant pain.

Soon, it affected my left eye. Any bright light or use of my eye caused breathtaking pain. The rest of me was fine, but I was now 100% disabled by pain.

It kept me virtually housebound, going out only for groceries, doctor's appointments, and the pharmacy. I stayed in as much as I could. Either the pain was so great I couldn't go out, or the fear of it being triggered kept me its prisoner.

Most of us are fine one minute, then wham, the pain strikes.

Our pain is like a tornado. For some, it comes on suddenly like a whirling dervish. For others, like the buildup to a tornado, it slowly gathers strength before demolishing who we were, what we had, and what we wanted to be. 

The pain took so much from me. The hopes and dreams I had before the pain were turned into rubble, yet I couldn’t let them go.

After a tornado the Red Cross comes in, neighbors and churches offer help.

But I find that isn't the case when it comes to chronic pain. Instead, people tend to look away or mouth platitudes, all while pretending our lives haven't been devastated.

I have had the pain for over 40 years. I still don't accept it. I keep looking for the life I expected to have.  It's never there.

Ultimately, the TV character finds one of her treasured belongings in the wreckage of her home.  She is ecstatic and relieved.  She suddenly sees the rest of the damage as merely a chore she has to deal with.

Maybe, just maybe, one day I can do the same.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 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. 

A Cautionary Tale: Why Lived Experience with Chronic Pain Matters

By Neen Monty,

I went undiagnosed with a serious, painful, progressive and incurable neurological disease for over a decade, because nearly every healthcare professional I saw assumed I was a hysterical woman with a low pain tolerance.

I am not that stereotype. I am the opposite.

Because doctors, GPs, neurologists, rheumatologists, nurses and physical therapists dismissed me and refused to do proper diagnostic tests, I now live with permanent disability and unrelenting, severe pain.

Had I been diagnosed by the first neurologist, the second, or even the third, I would have had a good chance at remission. At not being disabled. At not being in pain for every second of the rest of my life.

Early treatment leads to better outcomes in most diseases. Mine included.

It was assumed that the pain I was describing was from my rheumatoid arthritis. But, because my bloodwork showed no inflammation, it was assumed that I just had a low pain tolerance. And that I was a bit hysterical. A bit of a malingerer. A bit of a pussy.

Never assume.

Never once did they consider I was telling the truth about the severe neuropathic pain I was experiencing.

I was fobbed off by every doctor. I was told I had everything from plain old run of the mill anxiety to a functional neurological disorder. I was referred to a psychologist, who I did consult. But my mental health has no bearing on my pain.

These diagnoses were wrong. Dead wrong. And very harmful.

They made assumptions based on a stereotype I do not fit. They made snap judgments. They failed to do their jobs.

And the price was my life. The quality of my life.

Doctors talk about the fear of making a mistake that kills someone. But they never seem to consider the damage when they condemn you to a life of unrelieved, preventable suffering. They never consider their bias, their laziness, their ignorance, might steal someone’s future. Condemn someone to a lifetime of disability and pain.

Never. Even. Considered it.

But that’s what happened to me.

I am not posting this because I am bitter. I do not dwell on this. I get on with my life, I make the best of what I have.

But my story is important.

It is a very important cautionary tale that more doctors, therapists and health care professionals need to consider: Your mistakes can ruin lives. If you misjudge someone, if you get it wrong, you might be destroying someone’s future. If you write on their file that they are hysterical or a hypochondriac or an addict, every future healthcare professional’s diagnosis will be coloured by your mistake and your misjudgment. You are condemning the patient, and you are preventing them from receiving the care they need.

My lived experience is a warning.

Read my story and ask yourself, honestly, would you have made that diagnosis? Would you have missed that diagnosis? Do you listen to your patients? When treatment fails, do you go back to first principles, start from scratch, and look for an alternate diagnosis? Or do you decide the patient is lazy, non-compliant, hysterical, or lying?

Do you blame the patient? Reflect on that honestly. Ask yourself honestly.

This is why lived experience matters. Why it is essential in patient advocacy. And why so many advocacy organizations are failing. They don’t understand the problems that those of us who live with severe pain face. They speak about us, but not for us.

So please. Read. Reflect. Ask the hard questions. Because it’s not just about life or death.

It’s about the life someone has to live after you get it wrong.

I could have had a normal life.

I didn’t have to be this disabled.

I didn’t have to be in this much pain.

But by the time anyone took me seriously, my disease was long-standing. Entrenched. Irreversible.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is rare, but it is very real. The pain is constant. Every second of my life, I have pain.

And the kicker? No doctor wants to treat it.

No one believes it can be that bad. Not friends. Not family. Not doctors.

Every doctor I saw may not have known exactly which neurological disease was causing my symptoms, but they should have known it was a neurological disease they were looking at. They should have recognized the red flags. They should have followed up.

Instead, they saw hysteria. They saw hypochondria. They saw a woman who was “overreacting.” A woman with “health anxiety.”

CIDP is a horrific disease. It has stolen my life. And it didn’t have to. I am 54 years old. I have been in pain for almost 20 years now. I live with significant disability. It did not have to be this way.

Again, this is not about blame. I am not bitter.

But I ask you to read and reflect. Ask yourself, honestly. Would you have made that diagnosis? Would you?

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

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

How Federal Budget Cuts May Impact Chronic Pain Care

By Mara Baer,

President Trump recently signed a sweeping budget reconciliation bill – known as the One Big Beautiful Bill -- that makes significant cuts to Medicaid of nearly $1 trillion. The legislation will fundamentally change the way Medicaid is administered by states and reduce health care coverage for millions over time.

The Republican-led effort was positioned to reform and right-size the Medicaid program, which over 70 million Americans rely on for healthcare coverage. But the reality is that for many people, including those living with chronic pain, significant losses of access to care and coverage will result. The new law’s provisions will:

1. Establish new work requirements for Medicaid eligibility for people aged 19-64

2. Reduce provider fees and related federal funding, further reducing state Medicaid revenues

3. Mandate more frequent Medicaid eligibility determinations

4. Disallow access to Affordable Care Act tax credits for those failing to meet the new work requirements.

While some of the law’s provisions do not take effect until 2026 or later, states must act now to implement complex and costly requirements. Many have already begun the process. For example, in my home state of Colorado, a special legislative session is being considered to try and tackle some of the financial impacts.

Some of the key direct impacts on people with Medicaid who live with chronic pain include:

• Coverage losses. Work requirements for Medicaid beneficiaries to attest they are working at least 80 hours a month or get a work exemption. High impact chronic pain, which significantly interferes with daily life activity,  already prevents as many as 21 million Americans from working. Their ability to meet the new work requirements will be left to individual states, with some states having more onerous standards than others.

• Widening disparities. Data shows that chronic pain patients on Medicaid have worse pain severity and mental and physical functioning than non-Medicaid beneficiaries. As individuals lose their coverage or have reduced access to pain care, the disparity between these groups will widen. 

• Reduced access to multi-modal care. Research has found that there are disparities in coverage of chronic pain treatments by Medicaid and commercial insurance, with insurers providing more “restorative” therapies, such as physical therapy and chiropractic care. With state budget cuts, states will have to become even leaner in benefit structures and access, leading to possible reductions in comprehensive pain care, further widening the gap in insurance coverage.

• Fewer mental health services. Medicaid is the largest payer for mental health services. Because chronic pain and mental health are so intertwined, pain patients losing Medicaid coverage or experiencing service reductions for mental health face potentially significant impacts. This may include increased need for crisis services and more emergency department services.

With states now having to figure out how to implement these changes, some will have to make hard choices. Will new limits on benefits be required? Will they need to expand the use of prior authorization to help manage costs? Reduce benefits to the adult population? Cut new and innovative health services?

It is hard to know, but any of these issues can hit chronic pain patients particularly hard. Staying up-to-date on what is happening in your state will be important.

In addition to these issues, Affordable Care Act subsidies that help people buy coverage are set to expire at the end of the year. Many anticipate that Republicans in Congress will allow this expiration to happen. Combined with the expected coverage losses from the budget reconciliation bill, the number of uninsured Americans is expected to increase by 17 million.

If we do some basic math, applying the statistic that 1 in 4 Americans live with chronic pain, that’s over 4 million people in chronic pain losing coverage. From my point of view, even one is too many.

Mara Baer has lived with Neurogenic Thoracic Outlet Syndrome for over 10 years. She is a writer, speaker, and health policy consultant offering services through her women-owned small business, AgoHealth. Mara is a member of the National Pain Advocacy Center’s Science and Policy Council and writes a newsletter on Substack called Chronic Pain Chats.

That Time My Doctor Fired Me as a Patient

By Crystal Lindell

When I first developed chronic pain back in 2013, I had so little experience with our healthcare system that I genuinely thought that all my doctors would do everything possible to help me, like the doctor that Hugh Laurie played on the TV series House. 

The pain I developed came on suddenly and intensely. 

It wrapped around my right ribs like a rusty barbed wire, and I had no idea how to manage it, much less live with it. I just woke up with it one day when I was 29 years old, and it never went away. 

I initially went to the emergency room, where they told me that it was likely an ulcer. But after trying to treat that and still being in horrific pain weeks later, I went to a primary care doctor recommended by a friend. 

The doctor worked for a university hospital near Chicago and, at the time, I still thought that a good doctor would be able to figure out what was going on and be able to successfully treat it. After all, the pain was in such a specific place. Surely there was something they could do? 

But after weeks of multiple rounds of tests and imaging revealed no answers, that doctor started prescribing gabapentin and basically threw up his hands in defeat. 

The only problem was, while he could ignore my pain, I could not. It haunted me. 

The pain was slowly eating away at my life and my will to live. I had a desperate need to find help so that I could survive. 

The pain would keep me up for days on end, and I would sometimes get a friend to drive me to this doctor’s office first thing in the morning, desperate to see him and hoping he would help me. He would usually just increase my gabapentin prescription and send me on my way.  

It didn’t work. So, I kept calling and insisting on more appointments, naively assuming he would help me. 

After a few months of this, he gave me “the talk.” He said there was nothing else he could do for me and that he would no longer be seeing me. 

I was too shocked to even react. How could he give up when the pain was still persisting? How was I supposed to live like this?

He didn’t offer to refer me to anyone else. He just abandoned me. 

One thing you learn quickly as a chronically ill patient is that doctors hold all the power. If one decides to fire you as a patient, you don’t have much recourse. It doesn’t matter if you still need their help – they won’t be giving it to you. 

I’m sure the fact that I kept insisting on appointments annoyed him. But while he was facing annoyance, I was facing agony and desperation. I didn’t know what else to do. I needed his help, even after he stopped giving it. 

Out of necessity, I decided to uproot my life and move back in with my family, so that I could scale back how much I was working and focus on trying to figure out what was going on with my body. 

I eventually connected to a new doctor at a different university hospital and, thankfully, he did not give up on me. In fact, he was able to get me onto an opioid-based treatment plan that I still use today. He was able to give me back my will to live, and I still see him for my pain now.

My pain was eventually diagnosed as intercostal neuralgia, likely linked to my other eventual diagnosis, Ehlers-Danlos Syndrome. I still suffer from the pain today, but it’s much better managed. 

If you scroll through any online chronic illness group, you’ll find that a lot of other patients have also been fired by their doctors. 

I’m not sure what the solution is. After all, if a doctor doesn’t want to treat you anymore, it’s probably in your best interest to stop seeing them – they just hold way too much power over your body. 

But unfortunately, as it stands, they are able to leave you out in the cold with no alternatives for medical care. And if you’re suffering from a serious health issue, finding a new doctor can feel overwhelming and near impossible. 

Doctors should be required to refer your case to someone else if they want to fire you as a patient. They should have to help make sure that you’re still receiving healthcare, even if your condition is not acutely life threatening. 

I still wish the real world was filled with doctors who were as tenacious as Dr. House, but since it’s not, patients need more well-enforced rights. 

While doctors have the luxury of deciding which patients they will treat, patients are stuck living with the body that still needs treatment.. 

If we as patients aren’t allowed to give up on our health, doctors shouldn’t be allowed to give up on us.