My Use of Opioids Is None of Your Business

By Neen Monty

It seems like everyone these days has an unsolicited opinion about my pain management. Physical therapists, pharmacists, even my dentist has decided they need to weigh in on my opioid use.

Why do health care professionals who do not specialise in pain management feel entitled to comment on the way I manage my severe, long-standing pain? They clearly know nothing about opioids, have not read the studies, and are getting their knowledge from media headlines. If they actually read the studies, they wouldn’t be expressing these ignorant opinions.

But even so, it’s none of their business. If they are not treating my pain, why do they feel entitled to lecture me on a treatment plan that is well outside their expertise?

My rheumatologist doesn’t comment on my gastroenterologist’s treatment plan. My neurologist has zero interest in the way my immunologist is managing my symptoms. So why do health care professionals feel the need to comment on my use of opioids for pain relief?

For years, my pain was well controlled under the guidance of my GP — whom, I might add, is more than capable of managing pain. I never needed a pain specialist. I never needed to jump through ridiculous hoops or prove that my pain was “real enough” to deserve relief. And yet, thanks to the manufactured opioid crisis here in Australia, I was forced into a system that treats pain patients like criminals.

Let’s be clear: I am not an addict. I am a person with severe, incurable and excruciatingly painful diseases. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a progressive neurological disease that attacks my nerves. Refractory rheumatoid arthritis means my immune system is at war with my joints – all of them - and it’s winning.

These are not minor aches and pains. This is not pain that comes and goes. This is constant, severe pain. Pain when I’m at rest and even more pain when I move.  

These are not conditions that can be fixed with a little physio, deep breathing, or positive thinking. They are devastating, life-altering diseases, and pain relief is essential to my ability to function.

And yet, here we are. Every healthcare professional I encounter suddenly thinks my pain medication is their business.

My dentist, who is supposed to focus on my teeth, thinks it’s appropriate to lecture me on opioids.

My physiotherapist, whose job is to help me maintain muscle strength and mass, feels the need to moralise about my use of opioids. He is an expert in physiology and movement science, but knows nothing about pharmacology. Yet he believes that he does. And he's happy to tell me so.

Pharmacists, who definitely should know better, jump on the bandwagon with their judgmental takes. Yes, I have a supply of naloxone, even though it’s the biggest waste of money the government has ever been conned into spending by addiction researchers. I am at zero risk of needing it.

And no, I do not want information about how to taper my pain medicine. I actually need my pain medicine. I take it because I live with neuropathic and nociceptive chronic pain. You should try it sometime. I don’t think you’d enjoy it, but you’d be a better clinician. And person.

All of this unsolicited advice amounts to little more than bullying. Just the mention of an opioid turns some health care professionals into the high school bully. Do you want my lunch money as well?

What is this obsession with controlling other people’s pain relief? Why do you even have an opinion, when it is far outside of your area of practice? How can you possibly think it’s appropriate for you to judge how I treat my disease or my pain, when you met me two minutes ago?

Most of all, where is your empathy? Your compassion? Your human decency?

Lecturing and hectoring me is not compassionate, person-centred care.

Do you have an opinion on whether I take methotrexate or baricitinib for my rheumatoid arthritis? Does it matter, to you, which cDMARD or bDMARD I am taking? You’ve never heard of them, have you? They rarely make media headlines. Yet they are both riskier medications than opioids, and are more likely to cause serious adverse events. Yet you don’t care about those at all.

Do you care about my IVIG infusions? It’s extremely expensive medication. Unlike opioids, which are very cheap.

What about my steroid dose? You should care about that. All health care professionals know that high dose steroids, taken long term, are very dangerous. They often end up killing people. But because ignorant medical practitioners have taken my opioids away, I have been forced to live on high dose steroids. And all the side effects they bring.

But that’s fine with you. You don’t care about my steroid use. Only my poor endocrinologist does. Lovely gentleman. I can tell he truly cares about me as a patient. It shows in the way he treats me. With calm, gentle respect. He also stays in his lane. The only comment he has made about my opioid use is something akin to “I’m sorry you’re in so much pain.”

That’s a good doctor. After my first appointment with him, I went to my car and cried for 15 minutes straight. I’m not used to receiving that kind of compassion and empathy.

I normally get lectures. Unsolicited advice. And scare tactics: “Those drugs will kill you, you know!”

Or disgusted disbelief: “The pain can’t be that bad!”

Or, very commonly, abandonment: “You’re just going to have to learn to live with it.”

But why should I learn to live with pain that is easily treatable? Because you refuse to read the science? Because you like to get your medical knowledge from politicians, corrupt psychiatrists on the take, and researchers who misreport their own data to keep the grant money flowing?

Yeah, I know. At first, I thought all that was a conspiracy theory – no one would be so evil as to harm people who live with horrifically painful diseases just to further their own career, right? Of course not. No one would do… oh wait. Yes, they would.

Opioids are not for everyone. And thankfully, most people will never experience the kind of pain that requires around-the-clock opioids.

But when opioids are the only thing that reduces pain enough so that a person can survive and have a life, then opioids should be given. And in doses that actually relieve the pain, not a dose that some regulator or politician decided would be enough for everyone. Severe pain is a medical emergency. It does not matter if that pain is acute or chronic.

But let’s go back a step. I am in constant, severe pain. My nerves are being destroyed by my immune system, as are my joints. This is a documented and very painful disease process. Yet there is not an ounce of empathy. Not anymore, anyway.

Back in 2011, I went to a GP in absolute distress. I could not cope with the pain anymore and was crawling along the floor to get to the bathroom. The GP was compassionate. He knew that severe RA is a horrifically painful disease. He prescribed oxycodone and I got my life back.

And now? Health care professionals only have one thing to say: “Stop taking those opioids!”

It’s clear that these clinicians do not believe my pain is severe. It’s clear they don’t believe anything warrants long term opioid use. It’s clear that some think I only want opioids to get high.

Most clear of all is that they feel an entitlement to lecture me about it. When they know nothing about my pain.

The stigma created by the manufactured opioid crisis has turned us into the type of patients no doctor wants to treat. We are seen as liabilities. Nuisances. Whiners. Complainers. Time wasters. We’re seen as problems to be managed, rather than human beings in desperate need of help.

“Heartsink patients.” Are you familiar with that term? Google it. Heartsink patients are said to “exasperate, defeat, and overwhelm their doctors.”

I don’t fit that profile. Not even close. Very few people do. The profile was created so that doctors can feel they have the right to save the patient from themselves. Every single healthcare professional seems to think they have the right to weigh in, to judge and to lecture pain patients.

Here’s a radical idea: Mind your own business. Even better, educate yourself.

Read some recent science. Some peer reviewed science. Even read the studies that are referenced in the opioid prescribing guidelines. I promise you, they don’t say what you think they say.

Unless you are my GP or the prescribing doctor actively involved in my pain management, my opioid pain medication is not your concern. Yes, I need to tell you about it, in case you want to prescribe something that interacts with opioids. But that does not give you the right to judge me.

Pain is not a moral failing.

Taking opioids to manage pain is not a character flaw.

And it is none of your business.

Neen Monty is a writer and patient advocate in Australia who is dedicated to challenging misinformation and promoting access to safe, effective pain relief. Drawing on lived experience and scientific research, Neen has created a website for Pain Patient Advocacy Australia that is full of evidence that opioids can be safe and effective, even when taken long term. You can also subscribe to her free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Health Insurance Premiums Rising Faster Than Inflation

By Phillip Reese, KFF Health News

Kirk Vartan pays more than $2,000 a month for a high-deductible health insurance plan from Blue Shield on Covered California, the state’s Affordable Care Act marketplace. He could have selected a cheaper plan from a different provider, but he wanted one that includes his wife’s doctor.

“It’s for the two of us, and we’re not sick,” said Vartan, general manager at A Slice of New York pizza shops in the Bay Area cities of San Jose and Sunnyvale. “It’s ridiculous.”

Vartan, who is in his late 50s, is one of millions of Californians struggling to keep up with health insurance premiums ballooning faster than inflation.

Average monthly premiums for families with employer-provided health coverage in California’s private sector nearly doubled over the last 15 years, from just over $1,000 in 2008 to almost $2,000 in 2023, a KFF Health News analysis of federal data shows. That’s more than twice the rate of inflation. Also, employees have had to absorb a growing share of the cost.

The spike is not confined to California. Average premiums for families with employer-provided health coverage grew as fast nationwide as they did in California from 2008 through 2023, federal data shows. Premiums continued to grow rapidly in 2024, according to KFF.

Small-business groups warn that, for workers whose employers don’t provide coverage, the problem could get worse if Congress does not extend enhanced federal subsidies that make health insurance more affordable on individual markets such as Covered California, the public marketplace that insures more than 1.9 million Californians.

Premiums on Covered California have grown about 25% since 2022, roughly double the pace of inflation. But the exchange helps nearly 90% of enrollees mitigate high costs by offering state and federal subsidies based on income, with many families paying little or nothing.

Rising premiums also have hit government workers — and taxpayers. Premiums at CalPERS, which provides insurance to more than 1.5 million of California’s active and retired public employees and family members, have risen about 31% since 2022. Public employers pay part of the cost of premiums as negotiated with labor unions; workers pay the rest.

“Insurance premiums have been going up faster than wages over the last 20 years,” said Miranda Dietz, a researcher at the University of California-Berkeley Labor Center who focuses on health insurance. “Especially in the last couple of years, those premium increases have been pretty dramatic.”

Dietz said rising hospital prices are largely to blame. Consumer costs for hospitals and nursing homes rose about 88% from 2009 through 2024, roughly double the overall inflation rate, according to data from the Department of Labor. The rising cost of administering America’s massive health care system has also pushed premiums higher, she said.

Insurance companies remain highly profitable, but their gross margins — the amount by which premium income exceeds claims costs — were fairly steady during the last few years, KFF research shows. Under federal rules, insurers must spend a minimum percentage of premiums on medical care.

Rising insurance costs are cutting deeper into family incomes and squeezing small businesses.

The average annual cost of family health insurance offered by private sector companies was about $24,000, or roughly $2,000 a month, in California during 2023, according to the U.S. Department of Health and Human Services. Employers paid, on average, about two-thirds of the bill, with workers paying the remaining third, about $650 a month. Workers’ share of premiums has grown faster in California than in the rest of the nation.

Many small-business workers whose employers don’t offer health care turn to Covered California. During the last three decades, the percentage of businesses nationwide with 10 to 24 workers offering health insurance fell from 65% to 52%, according to the Employee Benefit Research Institute. Coverage fell from 34% to 23% among businesses with fewer than 10 employees.

“When an employee of a small business isn't able to access health insurance with their employer, they're more likely to leave that employer,” said Bianca Blomquist, California director for Small Business Majority, an advocacy group representing more than 85,000 small businesses across America.

Kirk Vartan said his pizza shop employs about 25 people and operates as a worker cooperative — a business owned by its workers. The small business lacks negotiating power to demand discounts from insurance companies to cover its workers. The best the shop could do, he said, were expensive plans that would make it hard for the cooperative to operate. And those plans would not offer as much coverage as workers could find for themselves through Covered California.

“It was a lose-lose all the way around,” he said.

Mark Seelig, a spokesperson for Blue Shield of California, said rising costs for hospital stays, doctor visits, and prescription drugs put upward pressure on premiums. Blue Shield has created a new initiative that he said is designed to lower drug prices and pass on savings to consumers.

Even at California companies offering insurance, the percentage of employees enrolled in plans with a deductible has roughly doubled in 20 years, rising to 77%, federal data shows. Deductibles are the amount a worker must pay for most types of care before their insurance company starts paying part of the bill. The average annual deductible for an employer-provided family health insurance plan was about $3,200 in 2023.

During the last two decades, the cost of health insurance premiums and deductibles in California rose from about 4% of median household income to about 12%, according to the UC Berkeley Labor Center, which conducts research on labor and employment issues.

As a result, the center found, many Californians are choosing to delay or forgo health care, including some preventive care.

California is trying to lower health care costs by setting statewide spending growth caps, which state officials hope will curb premium increases. The state recently established the Office of Health Care Affordability, which set a five-year target for annual spending growth at 3.5%, dropping to 3% by 2029. Failure to hit targets could result in hefty fines for health care organizations, though that likely wouldn’t happen until 2030 or later.

Other states that imposed similar caps saw health care costs rise more slowly than states that did not, Dietz said.

“Does that mean that health care becomes affordable for people?” she asked. “No. It means it doesn’t get worse as quickly.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

Why Are Doctors Reluctant to Recommend Mobility Aids?

By Crystal Lindell 

There’s a common thought process among doctors when it comes to opioid pain medications. 

They usually don’t prescribe them unless you specifically ask for them, because they don’t want to “encourage” you to use them. But also, if you do ask for opioids, then they label you as a drug seeker and assume you’re looking for “the easy way out” or to get high.

In short, most doctors try very hard to avoid giving patients opioids, unless they want to treat addiction with Suboxone – which ironically contains the opioid buprenorphine.

While I strongly disagree with every part of that thought process, in that situation doctors at least have the excuse that they have to worry about the DEA and losing their medical licenses. 

I’ve also noticed that many doctors have the same thought process when it comes to prescribing and/or recommending mobility aids like walking canes, crutches and wheelchairs. 

They don’t like to suggest them to patients because they don’t want to “encourage” their use. However, on the other end, if a patient does ask for them, doctors also bristle at that. They seem to think that mobility aids are, like opioids, “the easy way out.” 

Of course, there’s nothing easy about either opioids or mobility aids. If a patient has gotten to a point where they feel the need to use either one, chances are they are needed. 

I noticed these anti-mobility aid attitudes among doctors myself, when I had pain from a bone spur on my heel. My doctors never suggested crutches, and I had to figure out for myself that not using my foot was the only thing that seemed to help relieve the pain. I had some crutches at home from a previous injury, and using them allowed me to still function while also not putting weight on my foot. They also allowed my body to heal. 

Years ago, when my fiancé had a severe hip injury, he had to go out and buy his own cane because his doctors had not even suggested one, much less prescribed one – despite the very clear need. 

Online you’ll find multiple Reddit threads of patients expressing frustration at how doctors approach mobility aids. About a year ago in the “Mobility Aids” section of Subreddit, a poster asked, “Why are doctors so hesitant to let patients use mobility aids?”

“I use forearm crutches because I struggle to walk sometimes because of how much my pain hurts and my doctor thinks I have [an] autoimmune disorder that causes this pain which I'm getting more testing for but he goes ‘you're 19 you don't need mobility aids.’ But I have literally fallen over before. Laid in bed in agony barely able to move. Cried from how much it hurts and so much more yet they want to deny me what helps me get around?”

The post then has multiple responses from readers lamenting that they have had the same experience with doctors.

“I’ve had the same issues with doctors and just got mobility aids on my own, not through a doctor. I don't understand why doctors avoid it though because there’s been days at a time where I couldn’t leave my bed and it was hard to go anywhere or do anything on bad days [and] even on good days I still have troubles,” one poster wrote.

There is research that seems to confirm those fears.

A recent study in The Lancet found demographic, socioeconomic and social barriers impacted how much access people had to "mobility assistive products" or MAPs. They surveyed 12,080 people over age 50 in England and found that 42% had an unmet need for a mobility aid. 

Researchers found that women were more likely to have difficulty accessing mobility aids when they have a need for them. They also found that older patients who were unemployed or had a low education level had more trouble accessing MAPs.

Interestingly, having a romantic partner also increased the chances of having an unmet need for a mobility aid, whereas being single actually made patients more likely to have them. My guess is that single people are more likely to advocate for access to mobility aids, because they don’t have a partner at home to help them with daily tasks.  

Other studies have shown a prejudice toward patients with mobility aids among doctors. 

For example, a 2023 study published in the National Library of Medicine looked at physicians' attitudes about caring for disabled patients. They interviewed doctors in focus groups and found many had medical offices that presented “physical barriers to providing health care for people with disabilities, including inaccessible buildings and equipment.”

Some doctors openly admitted the lack of accessibility in their clinics. For example, one rural primary care physician said, “I know for a fact our building is not accessible.” 

If a doctor doesn’t even offer an accessible building to patients, odds are that they don’t prioritize mobility aids for the patients either. 

It seems that doctors assume that if patients start using a mobility aid, they’ll end up using it for the rest of their lives. But in my case and my fiance’s case, that’s not what happened. We both used them short term, and stopped as soon as we were healthy enough to do so. 

Regardless, who cares if people use mobility aids for the rest of their lives? Would that be such a bad thing? Being alive and independent with mobility aids is preferable to being confined at home and/or losing your independence. 

Perhaps some doctors see patients with mobility aids as a failure on their part. After all, if a patient needs them, then the doctor must not be doing enough to treat them. 

Mobility aids are exactly what the name implies – an aid that gives people more mobility, and by extension, more independence and freedom. They can greatly improve someone’s quality of life, whether they are used long or short-term. 

There’s no reason for doctors to gate-keep mobility aids, other than their own ablest bias. If they actually want to help patients, they should be suggesting them a lot more often. 

The Fine Art of ‘Knowing’ Your Body

By Cynthia Toussaint  

Three times in my life I knew something big, tragic and seemingly illogical was going to happen to me. All were trauma and health related, though I didn’t know that when my gut spoke to me with complete assuredness. 

Against all naysayers and doubters, my first two premonitions were eerily on target and heartbreakingly so. Trouble is, my third intuition is knocking at the door, and if I can’t change fate, I won’t survive to see my next birthday.

Can I turn my future around to save myself?

I don’t think there’s anything supernatural about my success at prognostication. The only special power I possess is an ability to tune into my inner wisdom and to trust it. As I learned more about the connection between mind and body – the bodymind, if you will – I’ve come to believe that my body unconsciously speaks to my mind and the premonitions are the conscious expression of that communication.       

My first hunch started when I was 17. With great interest, I read a magazine article about anorexia, as I’d almost died from this eating disorder five years prior. At the end of the piece, when the writer incorrectly stated that some anorexics can’t have children after being cured, my gut knew, unequivocally, that would be me.

I became obsessed, speaking endlessly about this knowing to friends and family, always landing on deaf ears because I appeared perfectly healthy. I then shared this fear with my gynecologist and even sought out a psychologist. After both assured me I’d have as many children as I wanted when the time was right, I knew they were wrong. My reasoning for not being able to have a child would morph from anorexia to a future, unknown health problem, one that would rear its head years later.

Meanwhile, at age 20, I regained my footing and was living a seemingly perfect life. I was in college, studying my great passions (singing, dancing and acting), got an agent and was auditioning for TV and film roles. Then out of the blue, another obsessive, dreadful foreknowledge came to me: my show business career would end when I was 21.

Again, my certainty landed on incredulous ears. “You’re making no sense, Cynthia” and “You’ve got your whole career ahead of you” and other reassurances came from all directions. But, again, I knew they were wrong.      

To meet the deadline that was amplifying in my head, I hustled to get my headshots and resumes done. I even recall yelling over the phone at my photographer for taking too much time. He couldn’t fathom my rush, especially when I paid to have someone drive my precious pics from his Bay Area studio to my LA dorm overnight.          

Like a cosmic special delivery, three months before my 22nd birthday, a ballet injury triggered Complex Regional Pain Syndrome (CRPS). Though it would be 13 years before my diagnosis, piece by piece, CRPS dismantled my performing career.

I managed to dance some in a Las Vegas illusion act, posed for Playboy and tried like hell to get hired as a TV host in LA. As a last-ditch effort, I sent hundreds of letters to industry folk and got an agent to represent me for sitting jobs as a “special booking,” all to no avail. No one would hire me due to my significant disability and limitations.           

Back on the baby front, my first premonition was still bubbling away. Just before my partner John and I planned to get pregnant, my gynecologist advised I needed a LEEP procedure to remove dysplasia. Tragically, that procedure spread CRPS into my cervix and vagina, lighting the area on neuropathic fire. As a result, I was unable to have intercourse through the rest of my child-bearing years.

No career, no child. My premonitions were two for two, batting a thousand. 

You can imagine my concern when in my early 40’s a new premonition took hold. I started sharing with John that I knew I would die before reaching age 65. This time around, there were no doubters.

My foretelling seemed to be playing out right on schedule, when at 59 I developed the most aggressive form of breast cancer – and then again two years later when I experienced a recurrence, followed by a year of painful, life-threatening complications caused by my overactive immune system.

But this time, unlike my previous two knowings, I’m pushing back.

I’m certain I’m still alive because I now understand that trauma drives illness, and since my first cancer diagnosis, I continue to do a ton of trauma release work while devoting myself to self-care.

If my next PET/CT scan is clean, I’ll reach the three year disease-free mark, which is considered by most oncologists to be a cure for Triple Negative breast cancer. Free and clear, as they say.

Still, I’m praying that nine months down the road, on New Year’s Eve, I’ll be blowing out candles on my 65th birthday cake. If I do, I’ll know that trauma release, self-care, and giving myself the agency and action to plot my course, allowed me to change my fate.

As those candles go out, my wish for all of us seemingly fated to suffer with chronic pain and other illness, will be that we will listen intimately to our whispering intuitions.  And maybe, just maybe, their words will light our way.  

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with CRPS and multiple co-morbidities for over four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Virtual Nature Scenes May Help Relieve Minor Pain

By Crystal Lindell

Nature scenes may help relieve minor acute pain – even if you only “see” the nature scene in a virtual reality program. That’s according to new research published this week in, appropriately, the journal Nature Communications. 

Researchers administered mild electric shocks to cause a pain response in 49 healthy volunteers, and then showed them a virtual reality scene that was either a nature scene of a lake, an urban cityscape, or an indoor office setting.  

The researchers then used both brain scans and self-reported pain reactions to analyze whether any of the scenes reduced pain. 

NATURE COMMUNICATIONS

They found that areas of the brain that handle physical pain signals were less active when people saw the virtual nature scene. Self-reported pain also was lower in the nature vs. urban and indoor settings. 

I will admit that, at first, I didn’t want to believe that “virtual nature scenes” could have the same mental effect as actual, living nature. But then I quickly realized that I did enjoy virtual nature scenes, fake or not. 

Every morning, after watching the news, I open the YouTube app on my Roku and select a calming nature scene to play on the TV throughout the day. In the winter, it’s a roaring fire; in the spring, a calming rainy scene; in the summer, ocean waves; and in the fall, autumn leaves rustling. 

While I’m not sure if any of the YouTube nature scenes help my physical pain, I do think they help calm my anxiety – in the same way that watching the news usually increases my anxiety. 

Of course, the mostly Austrian research team couldn’t resist slipping in a little anti-opioid messaging, writing: 

“Besides advancing our basic knowledge, such research may have considerable importance for efforts to complement pharmaceutical treatment approaches, with their well-documented negative side effects and addictive properties.”

While I’m glad they used the word “complement” instead of “replace,” it’s their mention of “negative side effects and addictive properties” that makes it clear that they do want this research to eventually lead to non-opioid pain treatments. 

But when you actually look at the study, you’ll see that it very specifically looks only at minor, acute pain. So this research should not be used to reduce pain medications for people with chronic pain. 

I’m not accusing the authors of wanting that, since they clearly think more studies are necessary. But in our current opioid-phobia environment, I do have concerns about doctors seeing the study headline and giving patients “go look at a lake” advice to reduce medication-based pain treatments.

Ideally, research like this would be used responsibly, inspiring healthcare providers to add more natural elements to places like doctor’s offices and even nursing homes – whether those nature elements are virtual, digital or physical paintings. 

Previous research has found that patients recovering from surgery used fewer analgesics and recovered faster if their hospital window gave them a view of trees, rather than a brick wall.

However, I remain extremely doubtful that this type of research will ever result in finding a way to use nature elements as an effective pain treatment in any way that even reduces the need for pain medication.

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

By Carol Levy

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

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

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

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

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

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

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

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

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

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

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

That argument sounds legitimate. But is it?

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

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

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

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

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

The Pain Scale is a Pain, but Doctors Ignore Alternatives

By Crystal Lindell

When I first started having debilitating rib pain more than 10 years ago, doctors would constantly ask me to rate my pain on a scale of 1-10. 

It was the worst pain I had ever experienced, but I didn’t want to sound too dramatic, so I would almost always tell them an 8 or a 9. 

However, I started to notice a troubling pattern: No matter what number I said, the doctors still treated me with the same mostly dismissive attitude. 

So, regardless of whether I said my pain was a 7, a 3, or even an 11, the doctors I was dealing with did not seem to believe me. They seemed to think I was being dramatic no matter what. 

At the time, I blamed myself. Surely I must not be communicating the severity of my pain well, if these doctors are still ignoring me, I thought. 

So I started scrounging around online for alternatives. I assumed that if I just explained myself better, then they would react with the urgency that I felt the situation called for.  

I also thought that perhaps I was picking the wrong number, which was causing doctors to dismiss me as someone who couldn’t accurately assess my own body. 

The first thing I found was a pain scale written out, where each number was explained, like this one from “My Health Alberta.” 

It includes a written description with each number, starting with:

0 = No pain.

1 = Pain is very mild, barely noticeable. Most of the time you don't think about it.

2 = Minor pain. It's annoying. You may have sharp pain now and then.

3 = Noticeable pain. It may distract you, but you can get used to it.

And so on. 

Looking at that chart, I decided that my new rib pain – which was eventually diagnosed as intercostal neuralgia that was caused by Ehlers-Danlos Syndrome – was a: “8 = Very strong pain. It's hard to do anything at all.”

The fact that I would often just lay on the exam table silently crying while I prayed that whatever doctor I was in front of would actually help me, made me feel pretty confident in my assessment of an “8.”. 

It was, indeed, very strong pain that made hard to do anything at all. 

I was also naive enough to believe that if I personally added the descriptor when I gave my number, that it would serve as some sort of magic spell that would finally unlock access to the treatment I needed. 

Alas, that did not work. Doctors just nodded and typed “8” into their little online chart and then moved on through the appointment the same way that they always had: With their trademark unsympathetic arrogance and suggestions about taking more gabapentin.  

After that, I went a step further: I tried to find a pain scale that felt more relevant. Eventually, I discovered the Quality of Life Scale, (QOLS). It’s designed for chronic pain patients to show how their pain is impacting their daily life.  

It's a reverse of the traditional pain scale, in that 0 is the worst pain, while 10 means you're doing pretty well. 

It features descriptions like: 

0: Stay in bed all day. Feel hopeless and helpless about life. 

1: Stay in bed at least half the day. Have no contact with the outside world. 

All the way up to:

10: Go to work/volunteer each day. Normal daily activities each day. Have a social life outside of work. Take an active part in family life. 

At the time, I was about a 4: Do simple chores around the house, minimal activities outside the home two days a week. 

Although those "activities" were just doctor's appointments, I was technically leaving my house every few days.

Looking back, I truly believed that using the QOLS scale with my doctors would be the breakthrough moment for my relationship with them. I remember printing it off and putting it in my healthcare binder full of hope that they would finally understand how bad things were for me. 

Alas, I was mistaken. 

Before I started having chronic pain, I was working a full-time job and a part-time one, and living independently. But my pain had gone untreated for so long that I had cut back on everything possible in my life. I shifted my full-time job to a work-from-home position, quit my part-time job, gave up my apartment, and moved in with family, who lived 2 hours away. 

I still remember thinking that when I told the two doctors I was seeing regularly about how I needed to quit my job and move in with my mom, that they would FINALLY see how severe my pain had been. Afterall, these were the real-life implications of where I was on the QOLS pain scale! 

Wrong again. Instead, both doctors just expressed quiet relief that I was moving out of the area, and thus I’d no longer be their problem! 

Thankfully, when I moved, I did find a new doctor who did take my pain seriously. And although it took some time to get the pain treatment situation under control, it’s been relatively well managed for years now. 

What I have come to realize about the pain scale is that most of the time, it’s not so much an assessment tool as it is a way for patients to feel a false sense of agency over their medical situation.

It’s like a little breadcrumb that doctors give patients to make them feel included in their own healthcare. 

Because in practice, doctors don’t give much weight to whatever number you say your pain is at. Instead, they rely on their own visual and sometimes physical assessment to determine how much pain they think you are in. 

This can be especially problematic for patients from oppressed or marginalized groups, because doctors are less likely to take their pain seriously in general. 

It’s also a huge problem for patients with chronic pain. That’s because when you live with pain every single day, you don’t react to a 10 on the pain scale the same way someone with acute pain would. It’s just not possible to live everyday screaming at the top of your lungs, or performing whatever stereotypical action doctors assume that someone with “real” pain would exhibit. 

For example, one of the things I learned quickly is that I needed to keep myself as calm as possible during a pain flare, because the more stressed and anxious I got, the more it elevated my pain. 

However, a 10 on the pain scale is still just as horrific, even if you’ve been at a 10 for months at a time. And it should elicit the same sense of urgency that would be customary for someone in acute pain saying that their pain was at a 10. 

In fact, I’d go so far as to argue that a 10 for a chronic pain patient can be even more harmful, because if you’re dealing with that level of pain for a long time, it will likely destroy your life. 

Unfortunately, most doctors can’t grasp any of this. So if you show up to an emergency room with an eerie sense of calm while trying to tell them that your pain is a 10/10, they are likely to be very skeptical. 

I wish I could end this column with some sort of solution for patients, but sadly, I don’t think I have one. If your doctor isn’t taking your pain seriously, they probably won’t change their approach just because you show them a different version of a pain scale. 

No, the solution to the frustrating experience of the pain scale will have to come from the other side: from doctors. 

My suggestion is that they start by just believing all patients and then responding accordingly. Unfortunately, under our current healthcare system, I don’t see that happening any time soon.

So all I’ve got for now, is all I’ve ever got: My hope for you that you’re not in too much pain today. 

What Do Tariffs and the War On Pain Patients Have in Common? Fentanyl-Phobia

By Crystal Lindell

Did you know that there’s a drug that kills 480,000 people in the United States annually? Based on years of headlines, you might assume that the drug in question is fentanyl, but you’d be wrong. It’s actually tobacco.

There’s another drug that kills 178,000 people in the United States annually. It's called alcohol. 

Meanwhile, illicit fentanyl, the street drug everyone loves to be scared of, was involved in the deaths of 73,654 people in 2022.

Any death is too many, but those statistics highlight how disproportionately we focus on fentanyl as the deadly drug we should fear most. 

For years now, overdoses involving fentanyl have been used to justify denying pain patients access to much safer prescription opioids, such as hydrocodone. Now it’s also being used as an excuse for new tariffs against Canada, Mexico and China, which went into effect this week. 

During his speech Tuesday night, President Donald Trump justified the tariffs by saying: “They’ve allowed fentanyl to come into our country at levels never seen before, killing hundreds of thousands of our citizens and many very young, beautiful people, destroying families. Nobody has ever seen anything like it.”

The situation shows how many aspects of our daily lives are impacted by the War on Drugs, whether it’s a doctor’s visit or economic policy. It also highlights just how much the war is used to justify whatever economic, healthcare, and law enforcement policies our government wants at any given time. 

Because, of course, if any of this was actually about saving lives, then we would be focusing on the drugs that kill more people than fentanyl: alcohol and tobacco. Those are both still sold over the counter though. 

Instead, our leaders lean on whipping up a moral panic about fentanyl. The end result is the same, whether that moral panic is used against patients or neighboring countries: it causes unnecessary pain and suffering. 

The headline on an NBC News article calls out the fact that the tariffs probably won’t reduce fentanyl deaths: “Trump says tariffs were enacted to curb fentanyl, but U.S. overdose deaths are already declining.”

The article also points out that nearly all confiscated fentanyl is seized at the US-Mexican border. In the current fiscal year, just 10 pounds of fentanyl have been recovered at the Canadian border, compared to 5,400 pounds at the Mexican border.

Canadian Prime Minister Justin Trudeau is under no illusion that fentanyl deaths are the real reason for the tariffs. MarketWatch reported that Trudeau called Trump’s rationale for using tariffs to stop the miniscule amount of fentanyl coming from Canada "completely bogus." 

"We have to fall back on the one thing he has said repeatedly – that what he wants is to see a total collapse of the Canadian economy, because that will make it easier to annex us," Trudeau said. "We are, of course, open to starting negotiations, (but) let us not fool ourselves about what he seems to be wanting."

Stepping back a bit, it’s important to note that the fentanyl bogeyman is just the latest facet of the War on Drugs, which the United States has been fighting and losing since 1971. The tariffs highlight how little the so-called war has ever been based on actually helping anyone. 

It would be wise to be skeptical anytime the War on Drugs is used as a justification for government policy. Just because a government claims something is the reason for a law or policy, that does not mean that that is the actual reason. That applies to tariffs, as well as limiting opioid pain medication. 

Skepticism should be applied to all drug-related policy in the United States. 

Documentary Looks at Plight of Children with Ehlers-Danlos Syndrome

By Madora Pennington

What would you do if your child were in pain? Not just in pain, but in screaming agony, day in and day out? If your child could no longer function?

The documentary "Complicated" follows four families who have a child with Ehlers-Danlos Syndrome (EDS), a rare genetic disorder that causes collagen and other body tissue to be fragile. EDS, named after the two doctors who first identified its peculiar symptoms, impacts those who have it in wildly different ways.

Collagen makes up a third of the body’s protein and is the glue that holds tissue together. To have defective collagen that stretches when it should hold firm can cause almost any part of the body to malfunction.

Over a century after its discovery, EDS is still poorly understood. There are no treatments to remedy the collagen defect itself. Patients and providers are often left groping for solutions for the damage flawed collagen wreaks.

If you have EDS like I do, you already know that what you are told to do to get better depends on the opinions of the specialists you happen to see. Don’t be surprised if they contradict each other, recommend treatments that have no studies behind them, have no understanding or experience with EDS at all, or recommend what is most lucrative for them.

As we see in Complicated, adolescence can be a particularly fraught time for the EDS child. As the body grows, the weight and stresses of longer, heavier limbs can overload the joints.  A growing EDS child may suddenly blow up in pain in places that used to be fine. Former activities can be impossible.

For reasons not well understood, the changing hormones of puberty can provoke a downturn in functioning, with issues like profound fatigue, GI problems, dizziness, allergic reactions, and so on.

Kids who become unable to eat get misdiagnosed with eating disorders. Kids too fatigued to get out of bed get labeled with depression, avoidance, or malingering. These kids are very sick in very strange ways that don’t happen to people with normal collagen.

Failed Surgeries

Spoiler alert and trigger warning for Complicated: two of the teenagers with hypermobile Ehlers-Danlos Syndrome (one of 13 varieties of EDS) tragically succumb in early adulthood. Both underwent extensive spine repairs in their teenage years.

These invasive treatments not only didn’t work, but lead to dangerous complications like loose and infected hardware implanted in their spines that, in the end, could not be repaired and destroyed all quality of life. Unfortunately, the documentary’s audience is left in the dark about how these families came to select these surgeries.

A study from 2012 warned against such surgery, concluding that half the EDS patients experience complications, despite a conservative surgical approach. “The surgeon choosing to operate on EDS patients must do so with extreme caution,” researchers warned.

Another horrifying outcome that Complicated does explore is how EDS families can be accused of medical child abuse (MCA). Also called Munchausen syndrome by proxy, MCA occurs when a parent or caregiver falsifies or exaggerates symptoms in their child and demands treatment that turns out to be harmful. Families with rare, poorly understood and very difficult conditions like EDS can go to extraordinary lengths to seek relief for their child’s suffering.

Andrea Dunlop, host of the podcast “Nobody Should Believe Me” and author of "The Mother Next Door: Medicine, Deception, and Munchausen by Proxy," explains how parents can fall into this trap.

“Munchausen is not seeking a second opinion or even hamming it up a little bit to make sure the doctor takes you seriously. It is a pattern of deliberate and often extremely well-researched deception perpetrated for the intrinsic reward of sympathy, attention, and — to a degree — the sheer thrill of fooling people,” Dunlop wrote.

MCA is diagnosed through medical records. If the records show parents claiming diagnoses for which there is no evidence, diagnoses never actually given by a doctor, or a caregiver’s demand for escalating interventions that pose great risk, those are red flags that something more sinister may be happening.

Complicated leaves out the specifics of how these families ended up under the microscope for MCA. It ends with one family’s joyous reunion and return to a place they love: Disneyland.

For this child, the family complied with child protective services and the courts by stopping excessive medical interventions. For all the EDS cases the documentary looks into, this child fared the best.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies.  

Chronic Pain Is Chronically Expensive

By Crystal Lindell 

My fiancé and I both have chronic pain. Which means we both spend a lot of money trying to manage it. 

Later today, he will drive an hour and a half each way to see his pain doctor so that they can drug test him in person.  He’s the only doctor in the region who will take new pain patients, so he’s the doctor my fiancé goes to, despite the long drive.

The doctor doesn't take my fiancé’s insurance though, so he will have to pay for the appointment the same way he pays for every monthly appointment with this doctor: with $160 cash. 

And when he gets his medication refill in a few days, that will also have to be paid for with cash at the pharmacy, because his insurance won’t cover prescriptions from doctors who don’t take the insurance. So that’s another $53. 

Aside from the direct costs of that whole ordeal, there’s also the in-direct costs like gas in the car, time away from being able to work on our (very) small online business, and the energy he’ll have to spend dealing with the drive and the stress. 

While he doesn’t have to see this doctor in-person every month, he does have to pay the full price for the appointment every 30 days, along with the prescription. So we have to find a way to basically pay for the equivalent of a car payment every month just so he can have the pain medication he needs to function. 

It’s just one of the ways living with chronic pain gets expensive fast, and also stays expensive. 

There’s the obvious stuff people think of, like the cost of both of us seeing doctors and filling prescriptions. But there’s also the less obvious stuff, like the regular purchases of bulk ibuprofen, Excedrin, and of course antacids for the heartburn caused by the other medications. 

And then there’s the more expensive stuff like the closet full of orthopedic braces, crutches, and walking aids.

There's also the $100/month we spend on kratom powder, which is the only over-the-counter substance that actually helps either of us when our very limited supply of prescription pain meds aren’t enough. And with the current swing in temperatures here in northern Illinois, there are a LOT of days when our limited pain meds aren’t enough. 

We also buy Gatorade every week to take the kratom with, because we’ve found it’s the best and cheapest option to use to get the dirt-like powder down. 

It all adds up so fast, especially with seemingly unlimited inflation. And it ends up being money that we can’t use to improve our lives in other ways, like building savings, having a wedding, or paying off debt. 

Speaking of debt, there’s also the added aspect of all the medical debt I’ve racked up over the last decade, despite having insurance for most of that time. It has essentially destroyed my credit, making it that much harder to secure housing and transportation. 

From the outside, it’s easy to assume that our money troubles must be caused by either our inherent laziness or our inability to budget correctly. But when you have health issues, your money is not the same. It is both harder to get and harder to keep. 

All of these costs are non-negotiable. We can’t just skip his doctor appointment because we have unexpected car problems to pay for. We can’t go without kratom as a trade off if we have unexpected veterinary bills for one of our cats. 

There are a lot of ways that society could be set up differently to help people with chronic pain and chronic illness. Things like universal health care, universal basic income, and expanded public transportation options would go a long way.

I would hope the fact that I’m a human being makes me worthy of social supports like that, but if that’s not enough, there are plenty of selfish reasons for other people to support expanded government programs.

While you may assume that because you don’t need some of these support systems yet, then you never will, you’d be wise to reconsider. Because that’s the thing about chronic illness: If you live long enough, eventually you’ll get sick too. 

And when you do, you’ll find out just how chronically expensive chronic illness really is.

Social Security Was Boosted by Covid Deaths, But at What Cost?

By Crystal Lindell

Three years ago, on Feb. 24, 2022, I woke up at 3 am to use the bathroom, and realized I had double-digit missed text messages and voice mails – all of them filled with words like “urgent” and “immediately.”

I called my brother and he gave me the news. Overnight, our dad, David Jeffery Lindell, had died.

He had been fighting a bad COVID infection for three weeks and was hospitalized multiple times. But then he was sent home, where he had a heart attack. Paramedics tried to save his life, but my dad died hours later at the local hospital, just before midnight. 

He was 67 years old, and because he had been battling chronic physical and mental health problems for decades, he had long been declared permanently disabled by the federal government.

So, like millions of Americans who died of COVID over the last few years, my dad was on Social Security.

Now, a new report from the National Bureau of Economic Research reveals a dark twist to the pandemic: So many people died of COVID between 2020 and 2023, that it increased the Social Security Trust Fund by $205 billion.  

CRYSTAL AT AGE 3 WITH HER FATHER

Well, more specifically, the 1.7 million “excess deaths” during those years saved the fund about $294 billion. Many of those deaths were working people, which resulted in less future payroll tax contributions and more payments to surviving loved ones. Factoring that in resulted in a net increase in the fund of $205 billion. 

The most heartbreaking revelation from the report though is that $205 billion isn’t a lot of money when it comes to Social Security. According to a Marketplace article about the report, the $205 billion in savings “won’t change much in the long term; the government pays that amount in benefits every couple of months."

In other words, all those human lives lost, and it’s barely even a blip when it comes to the federal government’s finances. 

It’s easy to forget that economic reports like this are talking about real, human lives. And that those human lives touched many other lives around them. My dad’s death was like a meteor hitting our whole family, and three years later, we are only just now starting to find solid ground again. 

A lot of the framing and discourse about this new report makes it sound like the government should be happy about the financial savings. But, as a country, now would be a good time to remember that human life has value in and of itself.

My dad mattered and would still be alive today, if not for COVID. He lived at poverty levels on his monthly Social Security benefits. His death, and the deaths of millions of others who were either on social security or set to receive it, should never be framed as a “good thing” by bean counters simply because it saved our government a miniscule amount of money.  

And to be clear, it wasn’t just people currently on Social Security who “boosted” the fund. People like my long-time friend Bronson Peshlaki, who had diabetes and died of COVID in 2020 at just 44 years old, will never collect on the Social Security payments he made his entire working life. Yes, that means his death was a cost-benefit for the U.S. government, but it was also a detrimental loss to the world. 

It can feel easy to dismiss the lives of the disabled, the elderly, the mentally ill – especially as their deaths are framed as some sort of economic boost for the rest of us.

But as someone with a disability, my life has value in this world. My dad’s life also had value, and so did my friend Bronson’s life. Now, as the U.S. healthcare system faces the possibility of more severe cuts and harmful policies under the Trump administration, it’s even more urgent that we remember that.

Every time the government lets a deadly disease spread a little more or cuts back on Medicaid, real people, with souls, will die. Regardless of how much money those deaths might save us, the cost is too high.

Trump Healthcare Policies Follow Project 2025 Playbook

By Stephanie Armour, KFF Health News

Few voters likely expected President Donald Trump in the first weeks of his administration to slash billions of dollars from the nation’s premier federal cancer research agency.

But funding cuts to the National Institutes of Health were presaged in Project 2025’s “Mandate for Leadership,” a conservative plan for governing that Trump said he knew nothing about during his campaign. Now, his administration has embraced it.

The 922-page playbook compiled by the Heritage Foundation, a conservative research group in Washington, says “the NIH monopoly on directing research should be broken” and calls for capping payments to universities and their hospitals to “help reduce federal taxpayer subsidization of leftist agendas.”

Universities, now slated to face sweeping cuts in agency grants that cover these overhead costs, say the policy will destroy ongoing and future biomedical science. A federal judge temporarily halted the cuts to medical research on Feb. 10 after they drew legal challenges from medical institutions and 22 states.

‘I Have No Idea What Project 2025 Is’

The rapid-fire adoption of many of Project 2025’s objectives indicates that Trump acolytes — many of its contributors were veterans of his first term, and some have joined his second administration — have for years quietly laid the groundwork to disrupt the national health system. That runs counter to Trump’s insistence on the campaign trail, after Democrats made Project 2025 a potent attack line, that he was ignorant of the document.

“I have no idea what Project 2025 is,” Trump said Oct. 31 at a rally in Albuquerque, New Mexico, one of many times he disclaimed any knowledge of the plan. “I’ve never read it, and I never will.”

But because his administration is hewing to the Heritage Foundation-compiled playbook so closely, opposition groups and some state Democratic leaders say they’re able to act swiftly to counter Trump’s moves in court.

They’re now preparing for Trump to act on Project 2025 recommendations for some of the nation’s largest and most important health programs, including Medicaid and Medicare, and for federal health agencies.

“There has been a lot of planning on the litigation side to challenge the executive orders and other early actions from a lot of different organizations,” said Noah Bookbinder, president of Citizens for Responsibility and Ethics in Washington, a watchdog group. “Project 2025 allowed for some preparation.”

The plan, for example, calls for state flexibility to impose premiums for some beneficiaries, work requirements, and lifetime caps or time limits on Medicaid coverage for some enrollees in the program for low-income and disabled Americans, which could lead to a surge in the number of uninsured after the Biden administration vastly expanded the program’s coverage.

“These proposals don’t directly alter eligibility for Medicaid or the benefits provided, but the ultimate effect would be fewer people with health coverage,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News. “When you erect barriers to people enrolling in Medicaid, like premiums or documenting work status, you end up rationing coverage by complexity and ability to pay.”

Congressional Republicans are contemplating a budget plan that could result in hundreds of billions of dollars being trimmed from Medicaid over 10 years.

Project 2025 called for expanding access to health plans that don’t comply with the Affordable Care Act’s strongest consumer protections. That may lead to more choice and lower monthly premiums for buyers, but unwitting consumers may face potentially massive out-of-pocket costs for care the plans won’t cover.

And Project 2025 called for halting Medicaid funding to Planned Parenthood affiliates. The organization, an important health care provider for women across the country, gets roughly $700 million annually from Medicaid and other government programs, based on its 2022-23 report. Abortion made up about 4% of services the organization provided to patients, the report says.

The administration’s steps to scrub words such as “equity” from federal documents, erase transgender identifiers, and curtail international medical aid — all part of the Project 2025 wish list — have already had sweeping ramifications, hobbling access to health care and eviscerating international programs that aim to prevent disease and improve maternal health outcomes.

Under a memorandum issued in January, for example, Trump reinstated and expanded a ban on federal funds to global organizations that provide legal information on abortions.

Studies have found that the ban, known as the “global gag rule” or “Mexico City Policy,” has stripped millions of dollars away from foreign aid groups that didn’t abide by it. It’s also had a chilling effect: In Zambia, one group removed information in brochures on contraception, and in Turkey, some providers stopped talking with patients about menstrual regulation as a form of family planning.

Project 2025 called on the next president to reinstate the gag rule, saying it “should be drafted broadly to apply to all foreign assistance.”

Trump also signed an executive order rolling back transgender rights by banning federal funds for transition-related care for people under age 19. An order he signed also directed the federal government to recognize only two sexes, male and female, and use the term “sex” instead of “gender.”

The Project 2025 document calls for deleting the term “gender identity” from federal rules, regulations, and grants and for unwinding policies and procedures that its authors say are used to advance a “radical redefinition of sex.” In addition, it states that Department of Health and Human Services programs should “protect children’s minds and bodies.”

“Radical actors inside and outside government are promoting harmful identity politics that replaces biological sex with subjective notions of ‘gender identity,’” the Project 2025 road map reads.

Data Disappears

As a result of Trump’s order on gender identity, health researchers say, the Centers for Disease Control and Prevention took down online information about transgender health and removed data on LGBTQ+ health. A federal judge on Feb. 11 ordered that much of the information be restored; the administration complied but added notices to some webpages labeling them “extremely inaccurate” and claiming they don’t “reflect biological reality.”

The CDC also delayed the release of information and findings on bird flu in the agency’s Morbidity and Mortality Weekly Report. Federal workers have said they were told to retract papers that contain words such as “nonbinary” or “transgender.” And some hospitals suspended gender-affirming care such as hormone therapy and puberty blockers for youths.

Advocacy groups say the orders discriminate and pose barriers to medically necessary care, and transgender children and their families have filed a number of court challenges.

Lawyers, advocates, and researchers say implementation of many of Project 2025’s health policy goals poses a threat.

“The playbook presents an antiscience, antidata, and antimedicine agenda,” according to a piece last year by Boston University researchers in JAMA.

The Project 2025 blueprint sets out goals to curb access to medication abortion, restructure public health agencies, and weaken protections against sex-based discrimination. It would have seniors enroll by default in Medicare Advantage plans run by commercial insurers, in essence privatizing the health program for older Americans. And it calls for eliminating coverage requirements for Affordable Care Act plans that people buy without federal subsidies, which, insurance experts say, risks leaving people underinsured.

“It’s the agenda of the Trump administration,” said Robert Weissman, a co-president of Public Citizen, a progressive consumer rights advocacy group. “It’s to minimize access to care under the guise of strict work requirements in Medicaid, privatizing Medicare, and rolling back consumer protections and subsidies in the Affordable Care Act.”

The White House didn’t respond to a message seeking comment. Conservatives have said implementation of the project’s proposals would curb waste and fraud in federal health programs and free health systems from the clutches of a radical “woke” agenda.

“Americans are tired of their government being used against them,” Paul Dans, a lawyer and former director of Project 2025, said last year in a statement. “The administrative state is, at best, completely out of touch with the American people and, at worst, is weaponized against them.”

Dans did not return messages seeking comment for this article.

The Heritage Foundation has sought to separate itself and Project 2025 from Trump’s executive orders and other initiatives on health.

“This isn’t about our recommendations in Project 2025 – something we’ve been doing for more than 40 years. This is about President Trump delivering on his promises to make America safer, stronger, and better than ever before, and he and his team deserve the credit,” Ellen Keenan, a spokesperson for Heritage, said in a statement.

Versions of the document have been produced roughly every four years since the 1980s and have influenced other GOP presidents. Former President Ronald Reagan adopted about two-thirds of the recommendations from an earlier Heritage guide, the group says.

In some instances, the Trump administration hasn’t just followed Project 2025’s proposals but has gone beyond them.

The document called on the next president to scale back and “deradicalize” the U.S. Agency for International Development, an independent federal agency that provides foreign aid and assistance, including for many international health programs.

The administration hasn’t just scaled back USAID. Trump adviser Elon Musk bragged on his social media platform, X, that his “Department of Government Efficiency” fed the agency “into the wood chipper,” physically closing its offices and putting nearly all its staff on administrative leave while ending funding for its programs and disseminating misinformation about them.

But the administration risks waning public support if it adopts the project’s goals to upend U.S. health care and health policy. Almost 60% of voters said they felt negatively about Project 2025 in a September poll by NBC News.

“Project 2025 was never a thought exercise; it was always a blueprint,” said Ally Boguhn, a spokesperson for Reproductive Freedom for All, an abortion rights group. “We’re only a few weeks into his presidency, and it’s setting the groundwork for even more.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues. It would like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

Experts Divided About Benefits and Harms of Opioid Tapering

By Crystal Lindell

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Gretchen’s Journey Into Chronic Pain and Death

By Maria Higginbotham

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

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

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

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

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

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

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

GRETCHEN LONT IN 2019

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

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

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

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

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

A Wasteland for Pain Patients

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

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

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

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

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

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

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

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

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

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

A New Diagnosis

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

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

gretchen 3 days before she passed

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

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

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

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

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

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

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

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

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

Physicians and Pharmacists Fear the DEA. Should Patients Sympathize?

By Crystal Lindell

Many doctors and pharmacists are scared about giving patients opioid pain medication because they are worried about getting in trouble. 

They worry about facing consequences from the Drug Enforcement Administration or about breaking local laws and in-house policies. That could mean losing their license, going to prison, or being reprimanded.  

The question is, how much sympathy should this elicit from patients? How understanding should we be of their plight?

Because if you ask doctors and pharmacists, they think the potential consequences should elicit mountains of sympathy – to the point that patients should be able to completely ignore their own physical pain.. 

Whenever I interact with healthcare professionals online or in real life, they will often quickly cite these hypothetical consequences as their reason for limiting opioid prescriptions or administering none at all.

And make no mistake, they are definitely limiting opioid prescriptions. As someone who’s helped many family members navigate the healthcare system, I’ve seen first-hand doctors refusing to prescribe opioids for chronic pain, acute pain, post-op pain, cancer pain, and even hospice pain. 

Meanwhile, even if patients get a prescription, pharmacists seem to do everything possible to avoid filling it. They claim your insurance won’t cover it, that they ran out of your medication, or that they can’t find the prescription that your doctor sent over. 

Doctors and pharmacists will justify these excuses with something along the lines of “I could lose my license! I could be arrested! I could face fines!”

It’s not just my anecdotal evidence though. A study looked at how a 2018 West Virginia law limiting initial doses of opioid medication to a 4-day supply impacted physician attitudes toward opioids. 

In a series of interviews with primary care providers, researchers found that the law “exacerbated the pre-existing fear of disciplinary action and led many prescribers to further curtail opioid prescriptions.”

As one participant, a male primary care physician with 14 years of practice, said:

“[It] really started to scare a lot…of providers into feeling that it wasn't worth the risk to continue to prescribe for fear of being labeled as an over-prescriber or being outside of the norm or, you know, the potential liability that goes along with it.“ 

“Liability.” That’s the key word in that quote. They are worried about themselves. 

The researchers said many providers “felt that taking on patients who legitimately required opioids could jeopardize their career.”

“Their career.” Again, it’s about them.

It’s as though doctors and pharmacists are expecting people in pain to nod their heads sympathetically and respond with something along the lines of: “Oh wow! I didn’t realize how difficult this was for you! But now that you’ve explained your hypothetical consequences, I’ll just go ahead and endure my debilitating pain that’s making me suicidal! Sorry I have burdened you! I sincerely apologize!”

It’s also especially interesting to me that the researchers noted that many of the patients they were talking about "legitimately required opioids.” So it’s not like doctors have some delusion that all these patients they are refusing to treat are "illegitimately" looking for pain meds. 

Medical need is apparently irrelevant when a doctor or pharmacist may get in trouble. 

So I have to tell you, as a patient, I feel about as much sympathy for them as they feel for the patients that they are denying care to – which is to say, almost none. 

The most obvious problem with their reasoning is that these doctors and pharmacists are always citing the potential consequences that they could face when it comes to opioids, while ignoring the very real harm they are causing their patients. 

Make no mistake, they are definitely causing very real and immediate harm to patients when they refuse to treat their pain. People with untreated pain actually do lose their careers, because their pain makes it impossible to hold a job. And when pain patients are forced onto the black market to find relief, they risk losing their lives or their freedom if they get arrested. 

Not to mention the fact that prescription opioids do more than just make the patient feel a little better. They can help patients rest when their bodies need that rest to heal. And they can help patients get through needed treatments like physical therapy. 

This isn’t just a problem for pain patients though. The speed at which doctors and pharmacists have made it clear that they will forgo medical reasoning in favor of “just following orders” should concern all of us.

When doctors start to act as police, we are all in trouble.