Flawed Mayo Clinic Study Promotes Opioid Myths

By Crystal Lindell

A new study has been released analyzing why patients start taking opioids — but all the research actually does is perpetuate harmful myths about opioids and the patients who use them. 

The study, which was just published in the Journal of Pain, was conducted by researchers from the Mayo Clinic and the National Center for Complementary and Integrative Health. 

The researchers say this is “the first study to present nationally representative rates of incident prescription opioid use.” But it’s the headline from a Mayo Clinic article about the study that clarifies what the authors were actually trying to get at. It reads: “Who is choosing to use prescription opioids?”

“Choosing” – as though patients have any choice about whether or not they use opioids. 

Opioid medications are not sold over the counter, and many doctors today do everything possible to avoid prescribing them. So the idea that any patient can walk into a doctor’s office and “choose” opioids over alternative treatments is wildly naive, at best. 

I’ll go a step further and somewhat defend the doctors here: if a doctor is prescribing opioids in the current opioid-phobia environment, they are not doing it as a first-line treatment. They’ve  already tried non-opioid medications and non-pharmaceutical therapies, which didn’t work.

But let’s take a step back and look at exactly what the authors of the study claim their research found. In a nationwide survey of nearly 10,500 people conducted in 2019 and 2020, about 4% started using prescription opioids. Four percent isn’t much, but it was enough to surprise the researchers.

"One of the things that we noticed is that people are still utilizing opioids as an early resort or first line treatment, before trying non-opioid treatments first, which goes against best practice guidelines in healthcare," said lead author Ryan D'Souza, MD, a Mayo Clinic anesthesiologist. "This is a wake-up call to how high the incidence rate among new users continues to be."

A bit of a jump in my opinion, but let’s go with that. What are these "early resort or first-line” treatments that D’Souza and his co-author want patients to try before resorting to opioids? As they explain: "Nonpharmacologic modalities, over-the-counter medications, and other nonopioid analgesics as initial treatment for pain."

“Nonpharmacologic modalities” means things like physical therapy and cognitive therapy. “Over-the-counter medications and “nonopioid analgesics” means pain relievers like ibuprofen and acetaminophen (Advil and Tylenol) or prescription medications like gabapentin.

Well, I have some great news for the researchers who did this study: Every single patient asking a doctor for opioid pain medication has already tried Advil. 

It’s also worth noting that some of the data was collected in 2020, which is infamous for being a year that greatly disrupted medical care because of COVID. It was the kind of disruption that literally limited how much access patients had to physical therapy and in-person cognitive therapy. So yes, some patients may have resorted to opioids during that time.

Also, physical and cognitive therapy are both significantly more expensive than hydrocodone, even if you have insurance. Both therapies require multiple sessions — sometimes in the same week — and most insurance companies require a copay for each session. So the difference in price can be dramatic, not to mention the cost of time away from work and family to go to appointments. 

The other major flaw in their list of alternatives is that none of them are great at treating pain quickly. Physical therapy may help over a period of weeks or months, but it’s not going to be much help to an arthritis patient who needs to get work on Monday. And there’s little data showing medications like gabapentin are effective at all when it comes to pain. 

In fact, the researchers found that “ineffective pain treatment” was the primary reason people were given a new prescription for opioids. Other leading factors for opioid use are three or more visits to the ER in one year; having four or more painful conditions; and having two or more disabilities.

Anyone with that many strikes against them probably needs opioids, yet the authors are still troubled that “some participants are using opioids… instead of following various best-practice guidelines.”

As is the case for most medical research, both the data collection and the conclusions drawn by the authors seem to have been done with zero input from any actual patients. That’s the foundational problem for the entire study. None of the conclusions factor in real life situations. 

Studies like this one that demonize every single use of opioids would have a lot more sway if there were actually effective opioid alternatives available. As it stands now, patients do not have an option between “an effective, non-addictive pain medication” and “an effective, always addictive pain medication.” 

In reality, the options are usually between “ineffective, non-addictive medication” and “effective and rarely addictive medication.” 

Anyone who’s actually experienced real pain will tell you that when those are the choices, the “effective” medication wins every time. 

It’s so exhausting that we are still dealing with such flawed thinking from the medical community when it comes to opioids. I understand that opioids make an easy villain in healthcare, but opioids are not a magical, always-addictive medication — no matter how many times the medical community tries to convince us otherwise.

I know this because most patients who undergo general anesthesia are routinely given the opioid medication fentanyl — and none of them wake up post-op suddenly addicted to opioids. In fact, most people who take opioids in any setting never develop problematic use.

So we would be wise to remember that the real villain isn’t opioids. It’s the problem they’re trying to address: pain.

The Whims of Pharmacy Pricing 

By Crystal Lindell

I pay cash for my prescriptions every month because I don’t currently have health insurance. 

I got laid off in 2022 and I’ve been freelancing to make ends meet since then, which makes it difficult to get health insurance. I know, not a great situation for a chronically ill patient to be in, but as Gambino said, “This is America.”

Thankfully, the cash prices for my prescriptions aren’t very high, so the situation has been manageable. For my main pain medication, which is not a name brand, I’ve been paying just $36 a month for over two years.

Unfortunately, I recently found out how vulnerable I am to price changes for prescriptions. 

My most recent refill was ready last week, but I was dealing with a pain flare — likely caused by our changing weather here in the Midwest. So I asked my fiance to pick it up for me in an effort to avoid having to endure a taxing trip out of the house.

But while I was at home waiting, he called to tell me that the pharmacy had just told him that there was a new price this month: $86. 

That’s a $50 increase! It literally went up nearly 139 percent! With no warning! 

Doing a little back-of-the-napkin math, because it’s a monthly prescription, that increase results in an extra $600 a year! Not to mention the fact that it also means the price could increase again next month. And then again the month after that. 

So I called the pharmacy to try to figure out what was going on. I spoke to two different people and they both told me that it’s the new price and there’s nothing they can do. 

One of them claimed the price went up months ago, but after I explained to her that I literally got the exact same medication four weeks ago for $36, she changed her story and said the price increased over the weekend. Or it may have increased overnight. 

She insisted there was nothing they could do about it. 

Since it’s a controlled substance and I have a pain patient contract with my doctor, I’m not allowed to have the prescription transferred to a different pharmacy to get it for a cheaper price. It’s one of those opioid regulations that was supposedly launched to keep patients safe, but it has instead resulted in pharmacies having their own monopolies. 

As a freelancer, my bank account balance varies dramatically, depending on which projects I’ve recently been paid for and which ones I’m waiting on payment for. So I didn’t have the full $86 in my account to cover the medication that day. 

Thankfully my mom lives nearby, and I’m able to borrow some money from her when situations like this occur. So my fiance drove home, and then I drove to my mom’s to pick up some cash from her. I then drove to the pharmacy myself to get the medication — all while still dealing with a spike in my daily pain. 

When I got to the counter, I recognized the pharmacist who was working as someone who’s been helpful to me in the past. So I took a chance and said, “Yeah, so the price went up dramatically? Huh?”

She looked at the prescription price and then quietly went to the computer for like 10 minutes to look into it. Then she came back over to me and said, “I got it back down to $36. Here you go, you can pay up front.”

I was half in shock and half worried that if I said the wrong thing, the price would go back up, so I didn’t ask how she did it. I just took the package and went up front to pay, hoping it would still be $36 next month.

I know I should be sharing the details of why it went up and then back down again, but I honestly don’t even know what they are. And I don’t think that those details are necessarily the point. 

The real point is that pharmacies have way too much power in pricing and the entire process is purposely opaque to make it difficult for patients to navigate. After I shared this story with some close friends the day it happened, many of them responded by telling me similar stories about arbitrary pricing at their pharmacies. 

The initial price increase should not have even happened in the first place. What patients pay for medication should not be dependent on the whims of pharmacy staff, especially when patients like me are not allowed to shop around for a more competitive price due to controlled substance regulations. 

As far as I can tell, there are no laws regulating how much pharmacies can increase prices for medication, nor any law requiring them to give a certain amount of notice when they do. If there are laws about such things, they aren’t publicized in any meaningful way. If patients don’t know they have a right, does the right even exist?

I don’t know if there’s any good advice for patients to take from this experience. Most patients on controlled substances can’t risk angering their pharmacist, so it’s understandable they would just choose to pay a higher price if that’s what the pharmacy wanted. 

The situation reminds me of someone else that sells drugs: street dealers. But at least with street dealers, customers usually have the option of shopping around for a better price. 

Eilish, Dunham, Jamil: How Ehlers-Danlos Celebrities Raise Awareness and Scrutiny

By Crystal Lindell

I have to confess that I never watched the HBO Show Girls. It’s not that it looks like a bad show. In fact, almost the opposite. It sounds like a good show. 

But as a young millennial flailing through life when Girls premiered in 2012, I worried that I’d see myself — including my flaws — reflected back at me. And I just have never been in a place, mentally, to process that kind of personal attack. So I didn’t watch Girls.

When the show’s top star and creator Lena Dunham later revealed that she had the same health condition as me — Ehlers-Danlos Syndrome (EDS) — it only worked to confirm my fears. 

A lot of people hate Lena Dunham, and a lot of people also hate the character she played on Girls.

What if, through watching the show, I discover that I am like her?

What if I start to believe that I’m worthy of the same level of hate? And in the process, I start to hate myself?

After I was diagnosed with EDS in 2018, Dunham was among the first celebrities I remember seeing reveal her own diagnosis publicly. 

In the fall of 2019, Dunham posted unflattering paparazzi pictures of herself to Instagram — including one of her in a blue granny nightgown, holding a cane in one hand and a cellphone in the other.

LENA DUNHAM

“I could choose to be embarrassed by these paparazzi pics — I mean, that’s probably the point of someone publishing them in the first place — but I’m really not,” Dunham wrote.

“I could lie and say it was an early Halloween look… But the truth is just: This is what life is like when I’m struggling most with chronic illness. An Ehler-Danlos syndrome flare means that I need support from more than just my friends... so thank you, sweet cane!”

A lot of the online EDS community did not take the news well. 

One Reddit user wrote at the time: “Lena Dunham is an extremely problematic and troubled individual. If there is ANY celebrity whose claims — not just regarding illness but regarding all facets of autobiography — should be looked at with a critical and cautious eye, it’s her. She’s not someone we should, as a community, try to turn into a role model or representative for EDS.”

The sentiment summed up what a lot of EDS patients were saying on the internet at the time.

Finally, a celebrity bringing awareness to EDS, and I couldn’t even be excited about it? Instead, I worried that the people who hated her would now hate me too.

JAMEELA JAMIL

The other big name to reveal her EDS diagnosis in 2019 was Jameela Jamil.

And, unfortunately, she’s another celebrity who a lot of people love to hate

Two celebrities were out there spreading awareness about the very condition that has caused me immense health problems my entire life, but I couldn’t even post about it online without worrying about haters.

Over the years, a number of other celebrities have also revealed that they have EDS or a related hypermobility disorder, including: Selma Blair, Halsey, Sia, Cherylee Houston, Yvee Oddly and others. 

‘Been in Pain Since I Was Nine’

Most recently, Billie Eilish discussed her hypermobility, a condition often seen as related to EDS, in a recent Vogue profile. At times, she feels like she was at war with her own body.

“I’ve basically been in pain since I was nine,” said Eilish. “Growing up, I’d always hear people be like, ‘Just wait until you’re older! You’re going to have so much pain!’ And I remember being so furious.” 

Bringing EDS into the mainstream and creating awareness should, in theory, help more suffering patients get the diagnosis they seek. Ideally, it would also help lead to more research into the condition, including treatments and maybe even a cure. 

In a perfect world, increased awareness would also lead to more compassion for those struggling with the often painful symptoms of EDS. 

Sadly, over the years, I’ve watched the opposite often happen instead. As EDS has become more well-known, a lot of people have started to see EDS as a trendy diagnosis, the type patients want because they saw that a celebrity has it. 

BILLIE EILISH

In fact, a few years after I was diagnosed at a university hospital, I had a different medical specialist at the same university walk into the exam room and greet me for the first time with, “So what makes you think you have EDS?” 

He asked me as though I had Googled “EDS” on the way to the appointment and then decided to add it to my intake form on a whim. 

In fact, that’s been one of the most jarring things about having EDS. The condition has very obvious visual markers, but people will still try to claim it’s fake

My elbow extends way past the normal range of motion. You can’t fake that. 

Every celebrity I’ve seen who’s revealed their own EDS diagnosis has seemed intent on making sure that it is not seen as the most defining thing about them. It’s a truly understandable goal. I don’t want EDS to define me either. 

Unfortunately, EDS has started to be defined by the celebrities who have it: “That Lena Dunham-Jameela Jamil thing.” For better — and sometimes worse — they end up representing our condition in the eyes of the general public. 

While most EDS celebrities don’t have a slew of hate-fans behind them, none of them are fully beloved by the public. And, of course, that’s because being fully beloved by the public is impossible for any human being. 

In fact, all of us are flawed. So in that sense, EDS celebrities are just like us! 

Peer Reviewers of Medical Studies Have Conflicts of Interest 

By Crystal Lindell

How much are medical studies impacted by financial conflicts of interest? New research shows the problem may run deeper than most people realize. 

The authors of peer-reviewed studies in medical journals usually have to disclose whether or not they received money from pharmaceutical companies or medical device manufacturers. But new research published in JAMA looks at the next layer: the peer reviewers themselves.

Due to the “traditionally opaque nature of peer review,” it’s difficult to investigate the issue, but an international team of researchers studied peer reviewers at high-impact medical journals like The BMJ, JAMA, The Lancet, and The New England Journal of Medicine.

They looked specifically at nearly 2,000 U.S-based physicians who served as peer reviewers. 

What they found is both unsurprising and alarming. Between 2020 and 2022, more than half (58.9%) of the peer reviewers analyzed had received at least one industry payment. In total, the peer reviewers received a staggering $1.06 billion in industry payments. 

It should be noted that companies don’t spend that kind of money out of some noble love of medicine. No, they are doing it because it helps increase their profits or advances their interests. 

Most of that money – $1 billion or 94 percent – was paid directly to individuals or to their institutions to help fund research programs. That’s why academics who churn out studies are highly prized at universities and research institutes.

The rest of the money – $64.18 million – was in the form of general payments, which includes everything from speaker fees and “honoraria” to food, drink, lodging and travel expenses. 

The median general payment to a peer reviewer was $7,614, while the median research payment was $153,173. 

Interestingly, the average male reviewer had a significantly higher total payment ($38,959) than the average female reviewer ($19,586). 

The authors also broke down differences between medical specialties. Doctors who specialize in cardiology, rheumatology, oncology, immunology or addiction treatment were the most likely to get payments (73.5%), followed by surgeons (72%), psychiatrists (65%), hospital-based specialists (47%) and primary care physicians (38%).

Those results shed light on which fields of medicine may be more susceptible to conflicts of interests.

The study’s authors came to the only conclusion that makes sense given all this data: "Additional research and transparency regarding industry payments in the peer review process are needed."

I agree that this is clearly an issue that needs to be addressed. But we shouldn’t have to wait for more research to start taking action. We need stronger policies at medical journals to help contain the potential harm it’s causing. 

At the very least, peer reviewers should have to disclose conflicts of interest. While that may conflict with the policy of some journals to keep peer reviewers anonymous, given the potential for bias and other negative consequences, it seems the financial disclosures should take precedence. 

Since peer reviewers also have the ability to reject research before it’s even published, they should have their names and potential conflicts listed in the publications. 

Beyond that, medical journals need to start having difficult conversations about whether peer reviewers should even be allowed to review studies that involve companies or industries that pay them. 

While it may not be entirely possible in our for-profit healthcare system, that doesn’t mean it shouldn’t be explored. After all, the study did not find that 100% of peer reviewers accepted payments. So clearly some peer reviewers found a way to do the work without an obvious conflict of interest.

It isn’t just medical journals that do a poor job flagging the conflicts of peer reviewers. When PNN made a Freedom of Information Act (FOIA) request to the CDC seeking more information about the “Core Expert Group” involved in the agency’s 2016 opioid guideline, most of the documents we received back were heavily edited or redacted.

The CDC’s FOIA office said the group was exempt from our request because of “deliberative process privilege” and that disclosing their conflicts would have been “a clearly unwarranted invasion of personal privacy.”  

Why Conflicts Matter

Why do conflicts of interest matter? The easiest way to understand it is that whenever money is involved, it can potentially lead to what is essentially a boss-employee power dynamic. And typically, people don’t like to upset their bosses. 

Intuitively, most people also understand that if a medical device company funds medical device research, the researchers are incentivized to manipulate both the research methods and results in hopes of providing the funder the results they seek. 

Sometimes it’s deliberate, but sometimes it just happens on a subconscious level. People naturally favor people who give them money. However, in this case, the result of that favoritism could harm the health of millions of patients. 

In one high-profile example from 2018, a top cancer researcher failed to disclose the millions of dollars in payments he received from drug and healthcare companies.

As ProPublica and The New York Times reported, Dr. José Baselga, then-chief medical officer at Memorial Sloan Kettering Cancer Center in New York, had a number of undisclosed conflicts of interests. 

One such conflict may have led Baselga to put a positive spin on the results of two Roche-sponsored clinical trials — trials that many others had considered disappointments. He did this without disclosing the more than $3 million in consulting fees he’d received from Roche. He also left out that he had a stake in a company Roche had acquired. 

Baselga resigned just days after the news investigation came out, but journalists just don’t have the resources to constantly investigate every single researcher for conflicts of interest. That’s why medical journals must regulate the issue themselves. 

Yes, most medical journals already have policies requiring study authors to disclose conflicts of interest, but as this new research makes clear, that’s not enough. It’s past time for peer reviewers to be required to do the same. 

After all, it’s not just because the public deserves to know. Our lives could depend on it. 

Do You Hurry to Outrun the Pain?

By Carol Levy

I'm infused with impatience. I do everything fast.

I used to swim at the YMCA. I didn’t feel like I was moving quickly, but to others I was a speeding bullet knifing through the water. As soon as I stopped, to make my turn at the end of the lane, invariably someone watching would yell down at me, “What's your rush? Isn't it more fun if you enjoy it?”

Not for me. It's not just the physicality of moving swiftly through the water, which for me is a wonderful feeling. More important is getting to the end of the mile of swimming I try to complete, before something happens to trigger my pain.

I can't tolerate touch to the left side of my face, due to trigeminal neuralgia and phantom pain. Just the idea of a droplet of water touching my face terrorizes me, so I only do the backstroke.

One day a man asked me, “Is that the only stroke you know? I could teach you others.”

I didn't want to explain why I only did the backstroke, so I shrugged my shoulders and swam away. 

The backstroke works for me because my arms move in such a way that they don't fire off bullets of water that might hit my face. Regardless, I am always at the mercy of the thought, “Be careful! Finish this before you get hit in the face with a droplet.”

I'm impatient because I have to outrun the pain. I get to the Y early, impatient to get into the pool before others, so no one gets in the lanes next to me and splashes water on my face.

This is true of almost every aspect of my life. I shop fast because using my eyes too much triggers the pain. The faster I go through a store, the less opportunity I have to see things I want to see, but did not come to buy.

On rare occasions, I get sidetracked.  I forget.  I start to look at what else they have. My eyes start to travel up and down the shelves, and the pain grows to such heights that I fear my ability to get out of the store and drive home safely. So, I rush.

Before my trigeminal neuralgia, I loved to read. I could read a whole book in a few hours. And as soon as I finished, like the joke about eating Chinese food, I'd be hungry to start a new one.

Now I can read only a few pages at a time, skipping words, paragraphs, pages, looking for the dialogue that essentially explains the story. Who the main characters are and what their relationships are with each other, are lost to me.

I am impatient to get to the end. Not to see who the murderer is (I love mysteries the best), but to get to the end quickly, so the pain doesn't interfere.

I could go on and on with other examples, but they don't matter. At the end of the day, they all boil down to one thing: Hurry up! Hurry up! The pain is coming! The pain has started!

But I have to get to the end. The end of the swimming lane, the grocery list, and the end of the book.

There are changes we all go through, no matter our circumstances. But I think pain sufferers change more than most people -- and the changes are largely the result of trying to outrun the pain. It’s an impatience that’s very hard for those without pain to understand.

As for me? I used to be the tortoise. Now I'm the hare. Right now, I'm hurrying to finish writing this column before the pain takes over from using my eyes so much.

Pain makes me rabbit my way through life. The tortoise, ambling by, gets to look at the scenery. The hare in us makes it hard to stop and smell the roses.

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. 

Hurricane Helene Highlights Need for Emergency Prescription Access

By Crystal Lindell

Following the news for Hurricane Helene this week, I’ve been worried about everyone in its path. But it’s the people who rely on prescription pain medication that I am most worried about. 

When natural disasters strike, patients who rely on opioids and other controlled substances can be left to face withdrawal or the black market to fill the gaps until doctors and pharmacies are fully functioning again.

While some states have laws in place to allow people to get early refills of their prescriptions when there’s an impending natural disaster, those laws can specifically exclude controlled substances like hydrocodone and Adderall. 

According to a 2022 article by Healthcare Ready, the laws vary widely state-by-state and are poorly organized. Only 12 states have laws or regulations that allow for emergency prescriptions during a specified public health emergency. About half the states allow for short-term refills of medication during unspecified emergencies. Fifteen states and the District of Columbia don’t have any regulations allowing for emergency prescriptions.

The two states facing the worst from Hurricane Helene, Florida and Georgia, both have laws allowing for emergency prescription refills – but only one allows for refills of opioids. 

Georgia specifically excludes Schedule 2 controlled substances such as codeine, hydrocodone, morphine and amphetamines, according to Atlanta News First

Florida’s law is much more expansive. You can obtain a 30-day refill of any prescription medication, as long as your county meets one of the state’s disaster qualifications. 

My guess is that Florida is more lenient due to the state’s reputation as a retirement destination. Older retired people are more likely to need pain medication and more likely to vote. 

It’s understandable that states more commonly hit by hurricanes would have laws in place to address this issue, but every state should allow for emergency prescription refills. Natural disasters like earthquakes, tornadoes and wildfires can happen anywhere. 

Ideally, this would be something best addressed at the federal level, so that patients who have to evacuate their state during emergencies would know they can get refills no matter where they go. Pharmacists would also need to be aware of how to apply the regulations. 

The Food and Drug Administration recommends that patients have at least a week's supply of  medication in case of emergencies – something that’s impossible for many pain patients. You know things are not functioning correctly when a federal agency is giving medical advice that patients are literally unable to follow. 

The last thing anyone facing the threat of losing their home or even their lives should have to worry about is running out of hydrocodone. Even a small daily dose can cause withdrawal if stopped abruptly.

Medication withdrawal in normal conditions can feel like hell. I can’t imagine what it would be like if you also had to deal with the aftermath of a hurricane or wildfire. It could take days or weeks before power is restored, pharmacies to reopen, and supply chains to start functioning again.

Nobody should have to endure that, and with sensible laws in place across the country, nobody would have to. 

A Medical Enigma I’ll Never Understand

By Pat Akerberg

I recently read Carol Levy’s column describing a medical enigma about a new pain-relieving medication. Carol and I both suffer with the same debilitating condition -- trigeminal neuralgia (TN) – so I was intrigued to learn more about it. Important to note that she has suffered with TN twice as long as I have. Bless you, Carol.

The new medication by Vertex Pharmaceuticals is suzetrigine, which the FDA is fast-tracking with a priority review.  For all the hype, it turns out that suzetrigine is only being studied as a treatment for acute pain and diabetic peripheral neuropathy.  Along with Carol, I had hoped this medication would be something for all of us in pain. Most especially since there hasn’t been any new pain medication for two decades. 

Here’s the medical enigma about the condition we suffer with that I’ll never understand.  Simply put, why can surgeons perform a microvascular decompression (MVD) brain surgery on TN patients when they cannot offer treatment for a bad outcome that might occur (and does 20% of the time)? 

And what happens if the neurosurgeon lies to you before the surgery and falsely claims that he/she can reverse any unwanted outcome? 

As background, I was struck with the lightning bolts of TN in 2009.  Because I wanted to return to work pronto, I chose to have MVD surgery in 2010 that was recommended to halt the horrific pain.  Instead, I wound up being harmed even further by the surgery.

Fast forward to the present, and I’ve been seen by 11 neurologists in my area who were all Ill-equipped to understand TN, let alone how to treat my worsened condition. 

So, I understand the rise of Carol’s hope and excitement about a possible new medication that might help alleviate the neuropathic pain we suffer with. The worst pain known to medical practice is TN, and the idea that using disappointing treatments like Tylenol or suzetrigine for it is truly unfathomable. 

But here’s what else I really don’t understand.  If surgery is allowed for TN, then why is the medical profession unable to deal with the unfortunate, damaging outcomes from it that happen to hundreds of patients like me? 

I’ve been told by neurosurgeons that training in medical schools for TN is woefully lacking.  Yet somehow performing surgeries for TN or other challenging conditions persists, especially for controversial surgeries that don’t have a good track record 6 months later. 

When I asked the neurosurgeon who performed my procedure what went wrong during the surgery, his response was: “No one ever told you that surgery was without risk.”

In other words, “You knew the risk and you chose to do it anyway.” 

Then he told me I should find a psychiatrist since I was so “anxious” about my unfortunate outcome. So much for his emotional intelligence and integrity (or competence for that matter).

Again, who wouldn’t be anxious if they underwent brain surgery thinking they would be rid of the wicked pain, only to wake up in worse pain through no fault of their own?  Imagine my shock afterwards when I learned he lied and couldn’t reverse anything that he claimed he could.

With zero assistance from him, I set out to contact neurological specialists internationally.  When I spoke with a TN neurosurgeon from Israel, he answered the enigma that has bothered me for years.  I’m paraphrasing what he told me, but here’s what he said:

“The United States is cut happy. The U.S. has a medical business model and, as such, they allow surgeries that the rest of the world would never perform given the susceptibility for harm in such a snug, vulnerable brain area.”

WOW.  That explained the run-around I experienced. It also explained why, despite my considerable efforts, I couldn’t get any pain relief (forget justice) for the harmful outcome I suffered with the phantom pain of anesthesia dolorosa.

Then I spoke with several TN experts around the U.S. after sending them my MRI.  Each one told me that since the detrimental outcome of my surgery sensitized my central nervous system, I would no longer be considered “operable” by most TN surgeons anywhere ever. 

Again, WOW.  I really need someone to explain to me why it’s considered okay to perform a risky surgery on someone when there’s no way to treat any disastrous outcome of said surgery.  My experience has been to blame me (the patient) with a neat, tidy self-serving explanation.

I guess it all comes down to how desperate one is to get relief from the pain caused by the “suicide disease.”  That desperation is then exploited with a buyer beware consent document.  

I’ve since learned that consent born out of desperation (or a lie) becomes absolution for the surgeons performing the MVD procedure for TN.  That frees those performing the surgery from their oath to do no harm. 

Here’s the kicker: After having done considerable research, I asked my neurosurgeon if any bad outcome could be reversed later. He answered “yes” in his fervor to ready me for the surgery. So, I signed the consent agreement based on his lie

Would you take on doing something that you knew could make a patient’s situation even worse, if you knew beforehand that you couldn’t do anything to correct it if something bad happened?  And who would be responsible if the outcome was bad? You or the patient?  Another enigma.

I guess the neurosurgeon from Israel was right about the American medical business model promoting “cut happy” surgeries that generate significant profits for their operating entities.

Interestingly, I also learned from my situation that conditions like TN are considered so rare that they are often relegated to teaching hospitals to give surgical residents training opportunities.

Even worse, regarding justice in the state of Florida where I live, one cannot sue a surgeon working for a teaching hospital. Why? Because the state owns the teaching hospitals and one cannot sue teaching hospitals owned by the state. Now, there’s a neat, circular wad of unjust enigmas further saddling the patient.

The medical enigmas abound with TN, and I suspect that’s also true with other painful conditions. So, it’s no wonder Carol chose to write about a much needed, yet disappointing pain medication that was fast-tracked to address a huge void in pain management. 

Another medical enigma that I’ll never understand: How is this whole medical approach to supposedly treating pain any different from a fox guarding the hen house?

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.  

Is the Hype About a New Non-Opioid Analgesic Justified?

By Carol Levy

In a previous column, I asked why pharmaceutical companies haven’t been able to “build a better mousetrap” by developing new and effective non-opioid medications for pain 

Every doctor I've seen about my chronic facial pain has only offered me opioids. As is true for many of us, I hate the way they make me feel. They also rarely help, outside of making me so cloudy-headed that I become less aware of the pain and have trouble thinking clearly.

That is the exact opposite of what the drug is supposed to do. It's supposed to make me feel better, and therefore better able to work, play, and do regular activities — which is exactly what the cloudiness stops me from doing. That's not a workable trade-off.

When I protest, “There must be something other than an opioid,” the reply from doctors is always the same: “There is nothing else.”

Now there may be. The FDA is giving priority review to a new drug application for suzetrigine, an experimental non-opioid analgesic developed by Vertex Pharmaceuticals. The drug has previously been granted “Fast Track” and “Breakthrough Therapy” designations by the agency for the treatment of moderate-to-severe acute pain. Final approval could come in January, which would make suzetrigine the first new class of medication for pain in over two decades.

The upside to suzetrigine is that it’s not an opioid. That would address the lie that we are responsible for the opioid crisis, and should be held captive by doctors who fear being raided by the DEA and don’t prescribe opioids anymore.

The downside is that suzetrigine is being considered as a treatment for acute pain and perhaps chronic neuropathy. My pain is neuropathic in nature -- trigeminal neuralgia and anaesthesia dolorosa (phantom pain) --- so I was at first exhilarated, and then deflated to see that suzetrigine is only being studied as a treatment for diabetic peripheral neuropathy. I had hoped this would be something for all of us.

I Google searched for other non-opioid analgesics, hoping there might be some new ones in the process of testing or even FDA fast-tracked. I couldn't find any.

As I researched further, I began to feel dejected. All drugs have downsides. That is expected. But I had hoped the FDA’s priority review meant the research was very positive about suzetrigine. Instead, I found there are many questions as to whether the drug is any better than what is already out there.

So why is the FDA fast-tracking it? Are they so eager to approve non-opioids that anything that might work will be considered? Maybe. The breakthrough therapy and fast-track designations may be geared more towards appeasing the FDA’s critics than anything else.

The headlines sounded so promising. “New Painkiller Could Bring Relief to Millions” and “A New Class of Medicine for Pain Relief On The Horizon.”

When I found out about this drug my heart leaped. Now I am not so sure. I hope it's not just another false flag. 

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. 

Direct-to-Consumer Prescription Programs Seem Ripe for Misuse 

By Crystal Lindell

Two large pharmaceutical companies have launched websites that help consumers get prescriptions to the medications that they make – and I’m honestly surprised that the entire setup is even legal.

Pfizer launched PfizerForAll in August, while Eli Lilly started LillyDirect back in January. Both websites connect patients with supposedly independent doctors, who can then write prescriptions – for Pfizer or Lilly medications, of course. Both companies will then help facilitate getting the prescription filled, even offering to connect patients with direct-to-home delivery. 

While direct-to-consumer prescriptions may seem like a win for patients – considering how overly complicated and expensive the U.S. healthcare system is – it also seems ripe for misuse. And when it comes to healthcare, that can have serious consequences, up to and including death.

Pfizer says its new website serves patients seeking treatment for migraines, COVID-19 or influenza, as well as adults seeking vaccines for preventable diseases, including COVID, flu, RSV and pneumococcal pneumonia. 

To be more specific, PfizerForAll facilitates patient access to Pfizer medications for migraine, COVID-19 or flu, as well as Pfizer vaccines. Maybe they should just call it AllForPfizer.

Meanwhile, Eli LIlly’s site is for patients seeking treatment for obesity, migraine and diabetes. Like Pfizer’s program, LillyDirect provides access only to “select Lilly medicines.” Maybe they should change the name to DirectToLilly. 

Both companies say their direct-to-consumer programs are designed to make things easier for patients who lack the time, knowledge and resources to manage their own health. 

“People often experience information overload and encounter roadblocks when making decisions for themselves or their family in our complex and often overwhelming U.S. healthcare system. This can be extremely time-consuming and lead to indecision or inaction – and as a result, poor health outcomes,” Aamir Malik, Executive Vice President and Chief U.S. Commercial Officer for Pfizer, said in a press release.

"A complex U.S. healthcare system adds to the burdens patients face when managing a chronic disease. With LillyDirect, our goal is to relieve some of those burdens by simplifying the patient experience to help improve outcomes," David Ricks, Lilly's chair and CEO, said when LillyDirect was launched

To make it easier for patients to buy Pfizer and Lilly products, both companies offer similar amenities. 

PfizerForAll boasts access to same-day doctor appointments; home delivery of prescriptions, over-the-counter drugs and tests; appointment scheduling for vaccines; and even help paying for Pfizer medicines. 

The LillyDirect site is similar. It offers "independent healthcare providers” and home delivery of Lilly medicines through “third-party pharmacy dispensing services." Lilly says its vendors make treatment decisions based on their own “independent medical judgment.”

So, yes, patients will get appointments with supposedly independent doctors. But something tells me the doctors getting booked with patients via Lilly’s website aren’t going to be writing any prescriptions for Pfizer medications. Or vice versa. 

I’m also very skeptical of the claim that doctors aren’t getting any money from the companies directly. Even if they are only getting referrals, that’s more than enough to heavily incentivize doctors to only prescribe medications that those companies make. Especially if the doctors are told that the patient they are seeing was referred to them by the pharmaceutical company itself.

Personally, when I see a doctor, I want them to write prescriptions based on what’s in my best interest – not what’s in the best interest of a pharmaceutical company. Perhaps it's naive and idealistic of me to still believe that doctors are writing prescriptions based solely on a patient’s need for that specific medicine.  

Perhaps healthcare in the United States is already so far beyond that thought process that these new websites aren’t too much of a leap. After all, pharmaceutical companies have long been working hard to influence doctors. So, maybe this is just the next logical step. 

Whenever I go to a makeup store like Ulta, I’m well aware that the seemingly helpful sales clerks are all trying to push me toward a specific lipstick brand. They may even get commissions from the lipstick company for making a sale. 

But, the thing is, what brand of lipstick I wear isn’t a life or death decision. I expect more from companies that make medications. Even if they don’t hold themselves to a higher standard, I expect more from the government regulators who allow this sort of thing. 

Yes, healthcare in the United States is horrific. I know that firsthand. I’m just not convinced that pharmaceutical companies have much interest in helping to fix that. 

CRPS: My Painful and Unwelcome House Guest

By Liliana Tricks

Complex Regional Pain Syndrome (CRPS) is like an unwelcome house guest that refuses to leave. It arrives uninvited, overstays its welcome, and disrupts your life completely.

CRPS took residence inside my body after my left foot was injured in 2017.  It feels as though someone is hacking at my leg with a meat cleaver, while a thousand insects bite and nibble at my flesh.

Living in Australia, I soon discovered that CRPS is largely unknown, and many specialists I encountered admitted they hadn’t even heard of it. This lack of understanding left me feeling vulnerable and isolated, as I had to rely on medical professionals who were often blind to my condition.

Clothes, once a source of joy and self-expression, now feel like a torment. I used to adore shopping, pampering myself with manicures, and indulging in all things feminine. But now, those same pleasures have become painful reminders of my limitations.

The clothing that once brought me comfort and confidence now itch, feel heavy, tight and suffocating. It's as if my skin is covered in prickles, shrapnel and itchy powder, making every movement a struggle.

Shoes, my former weakness, now sit in their boxes, ornaments of a life I once knew. My foot, a constant source of pain, swells and protests even the slightest pressure. There's no appeasing it, no soothing its fragile skin.

Simple tasks, like putting on pants, can derail my entire day. It's as if I've suddenly gained 100 pounds and all my clothing is too small. The uncertainty is maddening. Will my clothes be okay to wear today? Will my shoes be too tight? Will the socks dig into my foot, causing unbearable pain?

LILIANA TRICKS

I used to dream of exploring the world, hiking in the mountains of Nepal, immersing myself in new cultures, and starting a family. Now, my only wish is to endure the day without my body betraying me.

Humidity has become my arch-nemesis, a villain that steals my comfort. Cold weather is a cruel joke, rendering my body statue-like. When it warms, I feel like I am trapped in a heated sauna.

Growing up in neglect, surrounded by drug and alcohol abuse in my family, I vowed to avoid that path. But when CRPS moved in and consumed my life, I became dependent on medication. My mind is now clouded by a cocktail of medications that once delivered relief, but now only numbness.

I was prescribed apo-clonidine, alprazolam, gabapentin, Ativan, Valium, Lyrica, buprenorphine, tapentadol, codeine, apo-tramadol and Celebrex, just to name a few.

This nightmare concoction turned me into a docile Muppet, where I lost my sense of self. Labelled “non-compliant” due to my inability to attend doctor appointments and therapies, I felt isolated and alone. I barely survived those years, lost in a haze of medication.

Life resembled a puzzle, where the pieces seem ever-changing or lost. Friends, family and my social life dissolved. Being bedridden followed, as my body began failing me. That's when monstrous thoughts invaded, taunting me with all the places I'll never see: Scotland, England, Bali, Thailand. My dreams are now a constant reminder of my losses.

The relentless pain of Complex Regional Pain Syndrome ravaged my once vibrant spirit, leaving behind a hollow, sorrowful shell. I was simply existing. Sleep became a distant memory, replaced by restless nights filled with sweat, and hot and cold flashes. The changing of seasons felt like a cruel joke, as my world shrunk, chained with me to the confines of my bed.

CRPS drove me to apply for “voluntary assisted dying” or euthanasia. But I was deemed too young and too healthy.

Forced to live decades more in constant pain, I've come to realize that even those who suffered brutal deaths, like being hung, drawn and quartered, suffer for only a moment. Yet, in the 21st century, I'm expected to endure this agony because it doesn't bother anyone else. The pain is beyond comprehension, but others dictate what I should endure.

My mind yearns to do what my body cannot, leaving me stuck on a seesaw, half in the air, half on the floor, unable to move. Everything is fatiguing, seems out of place, and lacks familiarity.

Finding the strength to fight is challenging when understanding is scarce. I feel trapped in a world as unpredictable as a broken clock, caught in a time loop.

Ultimately, nothing remains unchanged. Each minute differs from the next. Each day brings its own uniqueness. The ability to perform an activity one day doesn't guarantee the same the following day.

At times, I may walk with slightly more ease, only to find moments later that I'm unable to walk at all. Suddenly, my body will feel heavy, fragile and brittle, as if my brain is no longer connected with the lifeless body it now drags. 

That’s when I often hear remarks like, "That's sudden." But it's not.

It's a challenge to learn to comfort oneself against the constant pain and flares. Otherwise, one might end up screaming incessantly for the rest of their life. Whether you express your pain loudly or keep it to yourself, the way you handle it doesn't determine its presence or absence. The intensity of someone's pain can’t be measured by screams.

There are moments when I do scream, hoping the pain will vanish. Other times, I attempt to “breathe it out.” There's no cure for CRPS, no instant relief, no definitive solution, not even a temporary fix, because nothing is certain to work consistently.

One must come to terms with life's new constraints. After eight years, I still battle every moment to accept my altered existence. This chronic nerve disease has overshadowed my life and keeps me in constant loops of various pains.

With a background in physical therapy, I have fought to maintain my strength despite the challenges. It hasn’t been easy; I've watched my body deteriorate, but I've also witnessed improvements through dedicated therapy. Every extra hour, day, or minute that I’m not confined is a testament to my resilience.

“If you don’t use it, you lose it,” became my guiding mantra.

I spent years blaming those who had a hand in my injury that resulted in CRPS. I didn't know how to let the anger go. I can’t change the past, but I could sit and stew in it, punishing myself further. For a while I did exactly that, but now I'm learning to accept it. The web of highs and lows.

This journey is mine, and my acceptance is what matters. Today, I search for peace in my life and hope for others when there is disappointment. I strive to push myself, for the moment I stop, I lose.

I remain steadfast, persevering in the struggle, and continuing to strive for joyful times. Because I still matter.

Liliana Tricks is 33 years old and lives in Western Australia.

Louisiana’s New Law Shows How Opioid Phobia Ushered in Abortion Restrictions

By Crystal Lindell

I’ve long said that pain medication is a “my body, my choice” issue – and a new Louisiana law really drives home the connection between opioids and abortion regulations. 

The state passed a law back in May that re-classifies mifepristone and misoprostol – two medications taken in tandem to induce abortion – as Schedule IV controlled substances, the same category as Xanax and Valium. 

Misoprostol is prescribed for a variety of situations, including reproductive health emergencies, as well as miscarriage treatment, labor induction, or intrauterine device (IUD) insertion. Because it is also used for chemically-induced abortions, the drug has long been a target of pro-life advocates in Louisiana, where abortion was criminalized in 2022.  

Under the new law, possession of either mifepristone or misoprostol without a prescription from a specially licensed doctor is a felony punishable by up to 5 years in prison.

It’s the biggest sign yet that the War on Drugs has officially collided with abortion rights in our post-Roe V. Wade world. Indeed, as states continue to restrict access to opioids and other medications, it becomes more and more obvious that pain patients and abortion rights advocates share a common fight. 

The state law goes into effect Oct. 1, but a report in the Louisiana Illuminator highlights how it’s already causing "confusion and angst" amongst healthcare professionals. 

In anticipation of the new law, some Louisiana hospitals are already removing mifepristone from their obstetric emergency care carts, where it would be used in the case of hemorrhage after delivery to stop bleeding and save a mother’s life. Removing it from the cart and locking it up is a standard practice at hospitals for controlled substances, but it means that mifepristone can’t be accessed immediately during emergencies. 

“Doctors and pharmacists are scrambling to come up with postpartum hemorrhage policies that will comply with the law while still providing proper medical care for women,” the Illuminator reports. 

Note how the idea of not complying with the law – which many doctors have personally disagreed with – doesn’t even seem to enter the realm of possibility. It’s the full manifestation of “just following orders” justification. 

One doctor theorized that the pending law also likely explains why pharmacists had been “pushing back” when she prescribed misoprostol for outpatient miscarriage management.

“They’ve been calling her to request clarification on why she prescribed the medication, and one pharmacy refused to fill the prescription,”  the Illuminator reported. “She had to send that patient to a different pharmacy. Her patients often travel hours to see her, and she regularly has to call in misoprostol to help them manage care at home.”

Pharmacies pushing back on doctor's prescriptions? That sounds familiar. In fact, many patients who take necessary medications like hydrocodone for pain or Adderall for ADHD have numerous stories to share about pharmacists trying to block their prescription from being filled.

And while it may not seem like it at first, all those points of friction in the process do lead to doctors refusing to prescribe controlled medications because they don’t want to deal with the hassle and risk of going to prison. It’s an outcome that I’m sure the Louisiana lawmakers who pushed the legislation through are hoping for with abortion-related medications. 

Making a Choice

It’s a grave mistake to think we can isolate things like pain medication restrictions from the rest of healthcare. Every new restriction that takes options away from doctors and patients paves the way for the next one that comes down the pike. 

Pro-choice advocates sometimes try to claim abortion medications shouldn’t be restricted because they are “life-saving.” However, many other controlled substances are also life-saving and we don’t see the pro-choice movement standing up for patients who need them. Those patients are also making a “choice” about their own bodies.

Untreated ADHD is proven to lower your life expectancy. Untreated and under-treated pain can cause a number of complications, from needless suffering and withdrawal to longer recovery times and even death when patients are forced to find pain relief on the unsafe black market.

Controlled substance laws make it much more difficult for patients who need medications labeled with that classification to get them – and people do die as a result. Just as people will likely die as a result of the new law in Louisiana. 

My concern is that the general public has been too quick to accept medication restrictions as necessary when they are promoted as solutions to things like the “opioid crisis.” I fear that people will start to believe that mifepristone and misoprostol are actually worthy of the classification of “dangerous controlled substance,” just as they believe medications like hydrocodone and Adderall are.

Unfortunately, if pain treatment is any indication, I don’t expect many doctors or hospital administrators to be willing to risk personal punishment for the health of their patients. I have personally seen doctors refuse opioids to dying patients because they “might get in trouble.”

I expect most medical professionals and hospitals will comply with the new Louisiana regulations without much tangible push back.

On the other hand, maybe there is a small place for hope here. Imagine a world where classifying more drugs as controlled substances helps medical professionals and the public understand why these classifications are problematic – legal frameworks that lack sound medical reasoning. Unfortunately, I don’t see that happening any time soon. 

In the meantime, pro-choice advocates could learn a lot from those of us who have been on the front lines of the drug war for decades. If we want to have any hope of victory, we all need to join together to fight all restrictions on bodily autonomy – whether it’s related to reproductive health, pain management, or any other health condition. 

We must join forces now. The longer we wait, the more emboldened governments will become in making choices for us.

Got a Surprise Medical Bill? Complaining About It Usually Pays Off

By Erin Duffy

What do you do when you disagree with or can’t afford a medical bill?

Many Americans struggle to pay medical bills, avoid care because of cost worries or forgo other needs due to health care cost burdens.

It can be hard to understand what you’re being charged for on a medical bill. I’m a health policy and economics researcher who studies insurance and out-of-pocket health care expenses, and even I sit at my kitchen table trying to wrap my head around bills and explanations of benefits.

In my newly published research, I surveyed a nationally representative sample of 1,135 American adults – a subset of participants from the University of Southern California’s Understanding America Study – to find out how they handle troubling medical bills. I learned that advocating for yourself can pay off when it comes to medical bills, and you may be missing out on financial relief when you don’t pick up the phone.

Squeaky Wheel Gets the Grease

My team and I found that 1 in 5 patients had received a health care bill in the prior year that they disagreed with or couldn’t afford. Nearly 35% of the bills came from doctor’s offices, nearly 20% from emergency rooms or urgent care and over 15% from hospitals. Other sources of bills included labs, imaging centers and dental offices.

A little over 61% of respondents contacted the billing office about a troubling bill, but 2 in 5 did not. Why not? About 86% of patients said they did not think it would make a difference.

But reaching out got results. Nearly 76% of patients who reached out got financial relief for an unaffordable bill. Nearly 74% who spoke up about a potential billing mistake received bill corrections. For those who negotiated their bills, nearly 62% saw a price drop.

Additionally, 18% of patients who reached out got a better understanding of their bill, 16% set up payment plans and a little over 7% got the bill canceled altogether. Nearly 22% said their issue was unresolved, and 24% reported no change.

The majority of people who reached out about their medical bills reported that it took less than one hour to handle their issue.

Grumpy Extroverts Get Results

We found that people with a more extroverted and less agreeable personality – based on the Big Five Personality Test – were more likely to reach out about a medical bill. People without a college degree, with lower financial literacy or with no health insurance were less likely to reach out to a billing office.

Differences in who does and doesn’t call about a medical bill may be exacerbating inequalities in how much people end up paying for health care and who has medical debt.

Many Americans are in health plans with high out-of-pocket cost sharing, including high-deductible plans. This so-called consumer-directed health care paradigm is intended to motivate consumers to be more cost-conscious when seeking care and navigating their bills. But by design, it puts the burden on patients to deal with billing issues.

Another recent study my team and I conducted found that 87% of U.S. hospitals offer their own payment plans, but only 22% of these put plan details on their websites. You have to call for more information.

In another recent study, my team called hospitals as “secret shoppers” planning an elective knee surgery. We sought information critical to assessing affordability: financial assistance, payment plans and payment timing options. While the information was often available, it was hard to access. We couldn’t reach a representative with information at about 18% of hospitals, even after calling on three different days. We were typically directed to three different offices to get all the information we wanted.

Policymakers have made strides in price transparency in recent years. For example, hospitals are required to post prices for their products and services. Practices and policies that further reduce the administrative burden of accessing aid and navigating troubling bills.

Pick Up the Phone

Patients who make the call are benefiting when it comes to medical bills.

A colleague who knew I was working on this study asked me for advice about a $425 bill her household had received for a lab test at an urgent care center. The bill seemed inflated and unfair, forcing an unexpected stretch to her budget.

I told her it was worth a call to the billing office to express her feelings about the bill and see whether any adjustments could be made to the amount owed or the timing of payment.

It was worth the call. The billing office representative offered three options on the spot:

a.) a payment plan, b.) a prompt payment of $126 paid immediately over the phone to settle the account, or c.) financial assistance if eligible based on income.

My colleague chose option b and paid less than one-third of the original bill amount.

The next time you get a medical bill that troubles you, pick up the phone or ask a disagreeable extrovert to make the call for you.

Erin L. Duffy, PhD, is a research scientist and the Director of Research Training at the USC Schaeffer Center for Health Policy and Economics. Her research explores cost-drivers, market failures, and patients’ financial liability in the U.S. healthcare system.

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

Can Psychedelics Be a New Option for Pain Management?

By Kevin Lenaburg

Science, healthcare providers and patients are increasingly finding that psychedelics can be uniquely effective treatments for a wide range of mental health conditions. What is less well-known, but also well-established, is that psychedelics can also be powerful treatments for chronic pain.

Classic psychedelics include psilocybin/psilocin (magic mushrooms), LSD, mescaline and dimethyltryptamine (DMT), a compound found in plants and animals that can be used as a mind-altering drug. Atypical psychedelics include MDMA (molly or ecstasy) and the anesthetic ketamine.

More than 60 scientific studies have shown the ability of psychedelics to reduce the sensation of acute pain and to lower or resolve chronic pain conditions such as fibromyalgia, cluster headache and complex regional pain syndrome (CRPS).

The complexity of pain is well matched by the multiple ways that psychedelic substances impact human physiology and perception. Psychedelics have a number of biological effects that can reduce or prevent pain through anti-nociceptive and anti-inflammatory effects. Psychedelics can also create neuroplasticity that alters and improves reflexive responses and perceptions of pain, and helps make pain seem less important. 

New mechanisms of action for how psychedelics improve pain are continually being discovered and proposed. Mounting evidence seems to show that a confluence of biological, psychological and social factors contribute to the potential of psychedelics to treat complex chronic pain. 

It is premature to state that there is one key or overarching mechanism at work. Research continues to explore different ways that psychedelics, combined with or without adjunctive therapies, can impact a wide range of pain conditions.

The National Institutes of Health recently posted a major funding opportunity to study psychedelics for chronic pain in older adults. And for the first time, PAINWeek, one of the largest conferences focused on pain management, has an entire track dedicated to Psychedelics for Pain at its annual meeting next month in Las Vegas. 

Clearly, pain management leaders are welcoming psychedelics as a vitally needed, novel treatment modality, and it is time for healthcare providers and patients to begin learning about this burgeoning field.

It is important to note that all classic psychedelics are currently illegal Schedule I controlled substances in the US. The FDA has granted Breakthrough Therapy Designation to multiple psychedelics, potentially accelerating access, but the road to approval at the federal level is long. 

However, at the state level, the landscape is changing rapidly. Similar to how states led the way in expanding legal access to cannabis, we are now seeing the same pattern with psychedelics. 

In 2020, Oregon voters approved an initiative that makes facilitated psilocybin sessions available to adults who can afford the treatment. 

Voters in Colorado approved a similar measure in 2022, with services becoming available in 2025. To become a certified facilitator in Colorado, individuals must pass a rigorous training program that includes required instruction on the use of natural psychedelics to treat chronic pain. 

This coming November, voters in Massachusetts will also decide on creating legal access to psychedelics. 

Over the next decade, we will likely see multiple pathways to access, such as continued expansion of state-licensed psychedelic therapies; FDA-approved psychedelic medicines; and the latest proposed model of responsible access, Personal Psychedelic Permits. The last option would allow for the independent use of select psychedelics after completing a medical screening and education course focused on benefits and harm reduction. Overall, we need policies that lead to safe supply, safe use and safe support.

As psychedelics have become more socially accepted and available, rates of use are increasing. This includes everything from large “heroic” doses, where people experience major shifts in perception and profound insights, to “microdoses” that are sub-perceptual and easily integrated into everyday life. 

In the area of chronic pain, a lot of the focus is on finding low-doses that are strong enough to reduce pain, but have no or minor visual effects. This amount seems sufficient for many people to activate the necessary receptors to reduce chronic pain.

While doctors are years away from being able to prescribe psychedelics, increasing public usage indicates that now is the time for the medical community to become more knowledgeable about psychedelic-pharmaceutical interactions and psychedelic best practices to serve the safety and healing of their patients.

We also need healthcare providers and pain patients to join the advocacy fight for increased research and expanded access to psychedelics. Providers have the medical training and knowledge to treat pain, while patients often have compelling personal stories of suffering and their own form of expertise based on lived experience. 

One of the most effective lobbying tandems is a patient who can share a powerful personal story of healing, hope and medical need, combined with the expertise and authority of a doctor. Together, we can create a world with responsible, legal access to psychedelic substances that lead to significant reductions in pain and suffering.

Kevin Lenaburg is the Executive Director of the Psychedelics & Pain Association (PPA) and the Policy Director for Clusterbusters, a nonprofit organization that serves people with cluster headache, one of the most painful conditions known to medicine. 

On September 28th and 29th, PPA is hosting its annual online Psychedelics & Pain Symposium, which features presentations from experts and patients in the field of psychedelics for chronic pain and other medical conditions. The first day is free and the second day is offered on a sliding scale, starting at $25.

Why a Diagnosis Really Matters When You Have a Chronic Illness

By Crystal Lindell

Trying to get a diagnosis for chronic health problems is like being born with brown hair and dying it blonde your whole life because it feels mandatory. 

Then, after one dye job too many, you start to lose your hair in chunks, so you decide it’s time to get some help. But by then, everyone is invested in you being a blonde. 

You go to the doctor and they look at your dyed blonde hair, which you’ve been maintaining because of societal expectations. And they say, “Umm, you don’t look brunette?” 

Then, despite your very visible brown roots, the doctor accuses you of just wanting the label of “brunette” as a fad. You wonder if he’s right, while your hair falls out from bleach damage.

It took 5 years for me to get an official diagnosis of Ehlers-Danlos syndrome (EDS) after I started having serious health problems. The kind of health problems that cause you to go from an independent overachiever with 2 jobs and an active social life down to one job, moving in with your mom and spending so much time in her basement that your vitamin D drops to dangerously low levels.

It took me 5 years even though a couple years before I was diagnosed with EDS a doctor added  “benign hypermobility” to my chart. A notation that should have almost immediately led to the Ehlers-Danlos syndrome diagnosis, seeing as how I was clearly having issues that were not benign! 

It honestly makes me want to scream obscenities just remembering it. How casual they were about my life. How dismissive it all feels in retrospect. 

Lurk around any chronic illness patient group online, and you’ll see a similar refrain: Doctors don’t like to diagnose complex chronic health conditions. In fact, patients often have to figure out what they have themselves, and then find a way to present it to the doctor without offending them. I suspect this is why it takes an average of six years to get a diagnosis for a rare disorder. 

Or, if you want to torture yourself, spend time on the Reddit boards for verified medical professionals. There you’ll see the doctors confirming your worst fears: They do think you’re hysterical. They do think you just want attention. They do think the diagnosis that fits your condition is just a fad.

I want to make those doctors understand why none of that is true. I desperately search for the words to make them understand why a diagnosis matters so much when you’re suffering. Even if there’s no cure. Even if it doesn’t change the course of treatment. Even if you’ve already diagnosed yourself.

I grasp at metaphors that fall through the overextended joints in my fingers, desperately trying to make them understand the importance of a diagnosis.

I want to make my case so bad. To use logic and poetry to explain why naming things does actually matter. More than that, I want to make the case for the other patients who are suffering without even being granted the words to explain why.

My pleas fall to the ground though, because doctors don’t listen. Their minds are already made up. It’s all in our heads. And even if it’s not, they say, there’s no point in labeling it. 

They accuse you of just wanting a label to feel special, as though they — as doctors and nurses with their very own set of special letters after their names — aren’t obsessed with labels that make them feel special. 

Worse though, I suspect that somewhere deep down, the doctors know what I know: If a diagnosis did not matter, they wouldn’t be so stressed about not handing them out.

Naming things empower you. It gives you a sense of control over something that’s usually very uncontrollable. But more than that, it gives you the ability to explain it to others. To connect to another human being about your experience.

So yes, a diagnosis does matter. It matters immensely. I just wish I had a single word to explain exactly why. 

The Pride and Prejudice of Living with Disability

By Mia Maysack

July was Disability Pride Month, and as much as people with disabilities deserve recognition, I could not help but have mixed feelings about it.

Disability awareness should not be a one-time event, something that is condensed to a single month, week or day on a calendar. I find that borderline hypocritical. We don't need support when it's convenient, fits neatly into a schedule, checks off some sort of box, or simply looks good.

What we're truly in need of is life-giving care, resources, accessibility and validation --- every single day. I believe the difficulty in achieving those goals comes down to adequate funding and the attitude of the general public, who more often than not separate themselves from the most vulnerable among us.

The overall health and well-being of a society is a collective responsibility that we all have a role to play in. Until we actively participate, we'll remain dependent on systems that are rigged against us, often due to distractive barriers such as class, sex, race and ableism.

Many of us who live with a disability understand that all it takes is a slight shift in circumstance to completely alter or change your life. Each of us are only an accident or diagnosis away from a completely different and more challenging existence.

Why is it we must wait for those challenges to happen to us personally, or to someone we know and care about, before we genuinely begin to give a damn? 

On the one hand, I am proud as hell to be a part of this disabled demographic. We not only continue to choose life, but we do so under scrutiny and circumstances that countless others don't have to worry about or take into consideration.

We not only cope, but face obstacles that more able-bodied individuals don’t even think of, such as the lack of wheelchair ramps, mobility obstacles, lack of transportation, or even the successful completion of the most mundane and basic chores of living.

On the other hand, what is it that I am supposed to be “proud” of exactly?  That it took me three attempts to complete one bathing session? That I was exhausted afterwards to the point of needing to spend the rest of the day recuperating?  Am I to be prideful that I exist in a country that persistently claims not to discriminate, but blatantly does so? 

Is it pride-worthy that I’m essentially punished for being unwell, while also being expected to someday improve -- without being granted adequate or proper accommodations to do so?  

Are we to figuratively jump-for-joy over the fact that we have to beg, plead and consistently “prove” the legitimacy of our disability, while simultaneously being condemned, doubted, judged and looked down on as burdens on society? 

Should I celebrate the fact that if I find work, fall in love or get married -- or God forbid make a dollar over my government allowance -- that I run the risk of my disability benefits being terminated?

If we don’t work at all, we are lazy bums. And if we get a job, then we were faking it! 

These are egregious injustices that keep us dependent. We’re treated as if we should be thanking our lucky stars for the ability to merely exist, with little awareness of the demands that it requires or the extensive toll that it takes.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.