Deception Was Used to Get Patients to Participate in Opioid Study

By Pat Anson

“We are lying to you to see if you are lying to us.”

That’s how patient advocate Andrea Anderson sums up the Orwellian methodology behind a recent study that explored whether pain patients are taking their opioid medication appropriately.

The study made use of high-tech pill bottles that record in real-time how often a bottle is opened and any changes to its weight. The goal is to see if patients adhered to their opioid regimen or were taking too many pills at once – a possible sign of abuse or diversion.

Researchers at the University of Texas Medical Branch (UTMB) enrolled 28 chronic pain patients in the study, giving participants a 90-day supply of opioids in three 30-dose pill bottles. Eighteen patients were given pills in the high-tech bottles --- known as the medication event monitoring system (MEMS) --- while the other 10 were given standard pill bottles. Patients in both groups were asked to keep a daily diary of their medication use

Here’s where the lying comes in. Instead of telling participants that the MEMS bottles would keep track of pills being removed, patients were told that the temperature and humidity inside the bottles were being monitored.

“The study involved incomplete disclosure and deception, as participants were informed that the purpose of the study was to test a new prescription bottle that will monitor the physical environment inside the bottle…. Participants were not informed that the bottles would record the number and timing of pills dispensed,” wrote lead author David Houghton, PhD, an Assistant Professor of Psychiatry and Behavioral Sciences at the Center for Addiction Research at UTMB.

You might think that lying and deception would be prohibited in clinical trials, but the design of this study was approved by an ethics review panel at UTMB. Researchers say they also complied with international research guidelines that allow deception to be used in psychology studies “when there is no alternative method that will produce reliable and valid results.”

At first glance, the study findings suggest that many patients were less than honest about their opioid use.

“Participants who received MEMS demonstrated highly heterogenous dosing patterns, with a substantial number of patients rapidly removing excessive amounts of medication and/or ‘stockpiling’ medication,” researchers reported in the Journal of Pain Research.

“Several sharp decreases in medication supply over short time periods were observed, and a substantial portion of participants ran out of medication before 30 days had elapsed. These data could reflect over-consumption or diversion of medication.”

In addition, 25% of participants in the MEMS group tested negative for opioid metabolites in their urine drug tests, which suggests they may have been hoarding or selling their opioids, and not taking them.

‘Hypothetically Significant’

But the small size of the study – just 18 patients in the MEMS group – raises questions about the reliability of the findings.

Diversion of opioid medication is actually quite rare – about three-tenths of one percent of prescribed pills, according to the DEA.

It’s also not uncommon for patients to stockpile opioid medication. In a recent PNN survey of nearly 3,000 pain patients, 32% told us that they hoarded opioids, in many cases because they are worried about shortages or losing access to opioids in the future.

Although participants in the UTMB study were told to remove pills from their bottles just before taking them, it’s possible that they took out an extra amount simply to fill their weekly pill boxes.

Researchers were also surprised to find that some participants appeared to put pills back into the bottles, another sign that those “highly heterogenous dosing patterns” tell us little, if anything, about opioid use.

In other words, the study may be nothing more than a case of “garbage in, garbage out,” with any number of reasonable explanations for patient behavior.

“It is impossible to conclusively determine that aberrant behavior, as recorded by the MEMS system, reflects misuse or diversion,” researchers admitted.

“It’s a terrible study in every way, and should never have happened,” says Andrea Anderson, who sees obvious flaws in MEMS that make its data unreliable. 

“If you wanted to divert your tablets, you could just take out the proper amount every time the stupid bottlecap lets you. Once you collected 20 tablets, you could go sell them if you wanted or take however many you liked. It certainly won’t prevent any type of diversion or misuse.”

Nevertheless, as is often the case in opioid research, sweeping conclusions were drawn from skimpy evidence. The UTMB researchers found enough “hypothetically significant clinical implications” to call for full-time monitoring of patients and their opioid use.

“These results highlight the limits in our understanding of naturalistic patterns of daily opioid use in chronic pain patients as well as support the use of MEMS for detecting potential misuse as compared to routine adherence monitoring methods. Future research directions include the need to determine how MEMS could be used to improve patient outcomes, minimize harm, and aid in clinical decision-making,” they concluded.

There is a company working on just that. Kansas-based SMRxT supplied UTMB researchers with the MEMS bottles and data used in the study. The company says its MEMS technology could be used to assign risk scores to patients – what it calls an “Absolute Adherence Score” – similar to the controversial Narxcare scores that assess a patient’s risk of opioid misuse and addiction based on their prescription drug history.   

“The SMRxT medication adherence system accurately captures data to reveal how patients take their medication. The system empowers and improves patient behavior,” the company claims in promotional material. “Once the prescription is filled, the device is ready to use. The system then translates data into actionable information for patient interventions and engagement.”

“We enjoyed working with the team at UTMB,” a spokesperson for SMRxT told PNN. “Our device is not in the development stage, and has been used by patients all over the country and many other academic research institutions.”

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.

FDA Clears New Prescription-Only TENS Device

By Pat Anson

Transcutaneous electrical nerve stimulation – more commonly known as TENS – uses mild electric currents to temporarily relieve pain in sore muscles and tissues. Some TENS units are elaborate wearable devices that cost hundreds of dollars, while others are simple gadgets that can be purchased online or over-the-counter for about $30.

Due to lingering questions about their effectiveness, many health insurers don’t cover TENS devices, while others make patients jump through hoops to get reimbursed for them.

Medical device maker Zynex Medical is hoping to bridge the gap in insurance coverage with a new TENS device called TensWave, which is only available by prescription. The company says the FDA has “cleared” TensWave for marketing, allowing sales to begin immediately.

"The introduction of TensWave aligns perfectly with our commitment to providing comprehensive pain management solutions," Thomas Sandgaard, CEO of Zynex, said in a press release.

"We recognized a gap in the market for a high-quality TENS device that meets the specific criteria for insurance reimbursement, and TensWave is our answer to that demand. It complements our flagship multi-modality device, the NexWave, where Interferential current is the main modality and driver of obtaining prescriptions. This device broadens our product portfolio and enhances our support to patients."

ZYNEX IMAGE

Unlike NexWave, which has three different electrical stimulation modalities, TensWave only uses TENS technology, which Zynex believes will make it easier to get insurance coverage. The company currently has no estimate of TensWave’s cost if a patient has to buy it out-of-pocket.   

In its press release, Zynex said TensWave “has been clinically proven to reduce chronic and acute pain,” which is a bit of an exaggeration, because the device did not go through the FDA’s lengthy review and approval process. However, because TensWave has “substantial equivalence” to other TENS units already on the market, it was cleared for sale without ever undergoing a clinical trial to prove its safety and efficacy. This is a common practice allowed by the FDA when new medical devices are introduced.

The World Health Organization takes a dim view of TENS, saying the evidence of its effectiveness in relieving chronic lower back pain is “very low” due to a limited number of clinical trials. In some trials, TENS worked no better than a placebo.

The UK’s National Health Service (NHS) has a similar view of TENS, saying there is not enough good-quality evidence to recommend its use as a reliable method of pain relief.

“Healthcare professionals have reported that it seems to help some people, although how well it works depends on the individual and the condition being treated,” the NHS states. “TENS is not a cure for pain and often only provides short-term relief while the TENS machine is being used.”

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.

DEA Delays Decision on Reclassifying Marijuana Until After the Election

By Crystal Lindell

The Drug Enforcement Administration has likely eliminated any possibility of marijuana being rescheduled until after a new president is sworn into office next year. The agency will hold a public hearing on the matter on December 2nd —  nearly a month after the presidential election —  according to a notice published yesterday in the Federal Register. 

The hearing will help determine if marijuana should be re-classified under Schedule III of the Controlled Substances Act (CSA) from its current status as an illegal Schedule I substance. 

Moving marijuana to schedule III would place it in a category of drugs that are considered to have an accepted medical use. Rescheduling would also indicate that cannabis has less potential for abuse than Schedule I and II substances, with only moderate to low risk of physical or psychological dependence. 

But the DEA has also made it clear that rescheduling does not equal legalization, noting that “the manufacture, distribution, dispensing, and possession of marijuana would remain subject to the applicable criminal prohibitions of the CSA.” 

To make a cannabis-based medicine legal under Schedule III, the Food and Drug Administration would first have to approve it for a specific medical condition, which would likely require a lengthy clinical trial process that could take years to complete.

The National Organization for the Reform of Marijuana Laws (NORML), an advocacy organization that has long fought for cannabis to be legalized, says it’s not surprised that the DEA wants to have public hearings. 

“Hearings are an integral part of the rescheduling process. To think that the DEA, which historically has opposed any changes to cannabis’ prohibitive status, would sign off on the most significant proposed change in federal marijuana policy in over fifty years absent such hearings was always wishful thinking,” said NORML Deputy Director Paul Armentano.

“That said, the scientific evidence in favor of removing cannabis from Schedule I remains overwhelming. Cannabis clearly has legitimate therapeutic value and it possesses a superior safety profile compared to other Schedule I or Schedule II controlled substances.”

The Biden Administration initiated the regulatory process to review the scheduling of cannabis in late 2022, a review that has dragged on for nearly two years. The Department of Health and Human Services (HHS) recommended marijuana be moved to Schedule III in August 2023.

But the Justice Department and DEA Administrator Anne Milgram – who has the final say on rescheduling – have yet to approve the HHS recommendation.  The DEA published the proposed change in cannabis’ classification in May in the Federal Register. That notice drew over 43,000 responses during a 60-day public comment period, with numerous requests for a public hearing.

Seeing the process take so long is frustrating. With 38 states and the District of Columbia allowing medical cannabis, it’s clear that marijuana has a legitimate medical use – a fact confirmed by the HHS recommendation to reschedule. So why are the DOJ and DEA dragging their feet?  

Holding the public hearing after the presidential election also risks that it won’t be done at all, depending on who wins and what their policy preference is on the matter. 

Although Democratic nominee Kamala Harris is likely to continue President Joe Biden’s push to have marijuana reclassified, we can’t be sure what she would do. Republican nominee Donald Trump has also indicated in recent days that he favors “decriminalizing” marijuana, but we also don’t know with certainty what he would do. 

With so many states having already legalized the medical and recreational use of marijuana, it’s become increasingly clear that there are no compelling health-related reasons to continue classifying cannabis as a Schedule I controlled substance. And the longer the DEA delays changing marijuana’s status, the more it should make all of us question how much health concern there really is behind the Controlled Substances Act.

A Company Will Help You Find a Pharmacy That Has Your Meds

By Pat Anson

If you have a prescription for oxycodone, Adderall, Wegovy or Ozempic, there’s a good chance you’ve had trouble getting it filled. That’s because many pharmacies are experiencing shortages of opioids, stimulants for ADHD, and diabetes drugs that have become popular weight-loss medications.  

The shortages are so acute that a recent PNN survey found that 90% of patients with an opioid prescription experienced delays or problems getting it filled. Many had to visit 3 or more pharmacies to find one that had their medication in stock.

“My pharmacy has been unable to order or get my medication for me for over 6 months now and they are unsure when they'll be able to order or get it for me again,” one patient told us.

“Having to call pharmacies is ridiculous,” said another. “You sit on the phone for 20 minutes just to find out they don’t have your medication.”

Peter Daggett knows all about the stress and anxiety that come with not being able to get a prescription filled. He and his friend, Parth Shah, have firsthand experience with the “pharmacy crawl.”

“We were both diagnosed with ADHD at a younger age, and as many people like us taking stimulant medication, we struggled to find pharmacies that had our medications in stock,” said Daggett. “I was banging my head against the wall. I couldn’t get my medications. I didn't have time to call pharmacies for three hours. I didn't have time to call 100 pharmacies to find one that has my medication.

“And I said to Parth, ‘I’d probably pay somebody 50 bucks if they go find this medication for me.’ And he said, ‘Maybe some other people would, too.’ So we decided to test this out and see if it was something that people wanted. And there were tons and tons of people right out of the gate that really wanted a service like this to exist.”

That’s when Dagget and Shah launched Medfinder, an online company that helps patients find local pharmacies that have their medications in stock. So far this year, they’ve helped over 6,000 patients get their prescriptions filled.  

Medfinder recently started advertising on Facebook and through Google’s advertising platform. Its pharmacy-finding service is available in all 50 states and is growing quickly.

“Our team will go and contact as many pharmacies as it takes to find a pharmacy that has the patient's medications in stock and is willing to dispense it. That will cover any geographic range that the patient wants,” Daggett explained.

“Generally, what we'll do is patients will come in, they'll put their zip code in, and then we'll start searching in the nearby radius. Once we find the pharmacy that has the patient's medication in stock, we'll text that patient (the name and location of) the pharmacy. Then we wait to hear back from the patient.”

MEDFINDER AD

A search for one medication costs $50, but Medfinder has sliding rate plans that can reduce the cost of each search to $30. Fees will be refunded if no pharmacy is found within five business days, but that doesn’t happen often. Daggett says the company has a 99% success rate and is usually able to find a pharmacy within 90 minutes.  

In addition to patients, Medfinder also wants to form partnerships with prescribers. That can save doctors the time and hassle of writing another prescription for the same drug when a patient’s initial search for a pharmacy doesn’t pan out. Once a pharmacy is found through Medfinder, the prescriber is prompted to send the prescription directly to them electronically.

Ozempic, Wegovy and other diabetes/weight loss drugs are Medfinder’s most widely requested medications, followed by ADHD stimulants. Opioids don’t currently make up a big part of the company’s business, but Daggett says they’ve had success finding pharmacies with opioids in stock, despite chronic nationwide shortages of oxycodone and hydrocodone.

“It's extremely rare that we're not able to find a medication for a patient,” he told PNN.       

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.

Election 2024: How Democrats and Republicans Are Failing Pain Patients

By Crystal Lindell

Now that both of the major U.S. political parties have held their national conventions, each has also released their 2024 party platforms outlining where they stand on specific issues. 

The platforms aren’t binding, but they do offer some insight into how the parties, and thus their respective presidential nominees, view different concerns facing the country. 

As a pain patient, I’m especially interested in how the two major parties are handling the topic of opioid medication. And I have to say that neither one seems great on the issue or even aware how millions of pain patients are suffering. 

The Democrats – with Vice President Kamala Harris as their nominee – are still focusing on opioid-phobia, while continuing to ignore the problems many pain patients face. 

The Republicans – with former President Donald Trump as their nominee  – don’t bother even mentioning the word “opioid” in their platform at all. 

Both parties do also have sections about illicit fentanyl coming over the southern border. 

The Democratic platform addresses fentanyl in a section titled “Beating the Opioid Epidemic.” I’m not a fan of how they framed the issue.  

“For too long, the scourge of opioids has torn through our communities, ripping apart families and shattering lives,” the Democratic platform states. “Our nation’s opioid epidemic impacts Americans in every corner of the country, from small towns to large cities to Tribal lands. Far too many Americans have lost loved ones to addiction and overdose. The Biden-Harris Administration is strengthening prevention, investing in treatment, and expanding recovery support services.”

The Democrats then go on to list what they see as their opioid-related achievements. For example, they say the Biden-Harris administration has increased the number of licensed providers who can offer medication-based addiction treatment from 129,000 to 2 million.

They also point out that they have made naloxone, an overdose-prevention drug, available over-the-counter at grocery stores and pharmacies. While I am glad to see expanded access to any medication, I just wish they hadn’t stopped at naloxone. 

The Democrats also brag about how they are “seizing record amounts of fentanyl and securing our border.” They also claim the administration has arrested more people for fentanyl-related crimes in the last two years than in the previous five years combined, while funding “more cutting-edge inspection machines to help detect fentanyl.”

Overall, the language is pretty stigmatizing and doesn’t mention the biggest opioid-related issue that’s actually impacting many people that I know: the fact that patients cannot get pain treatment when they need it. 

Death Penalty for Drug Dealers

Meanwhile, if you search for the word “opioid” in the Republican platform, you get zero results. However, under a section titled "Secure the Border," they say they’ll use the U.S. military to stop fentanyl smugglers.

"We will deploy the U.S. Navy to impose a full Fentanyl Blockade on the waters of our Region – boarding and inspecting ships to look for fentanyl and fentanyl precursors," the GOP platform states.

That framing tracks with how Trump has been addressing the issue. Last month, Trump drastically inflated fentanyl death numbers by claiming that we were “losing 300,000 people a year to fentanyl.” In fact, the number of opioid-related deaths is about 81,000 annually, most of them involving fentanyl. 

In previous statements, Trump said he would impose the death penalty as punishment for “everyone who sells drugs, gets caught selling drugs.”

Those types of lies and exaggeration only serve to further opioid-phobia, making doctors scared to prescribe any opioid-based pain medication for any reason. 

Overall, neither party seems to have pain patient access to opioid medication on their radar at all. While they ignore the issue, patients across the country suffer needlessly from the moral and legal panic about opioids. 

In an ideal world, the political parties would be promising to expand access to pain medications like hydrocodone, which has been greatly restricted over the last decade, despite being relatively safe and effective at treating pain. Instead they are offer a plan to re-educate medical professionals about addiction treatment, while ignoring the very real dangers of not treating pain. 

We seem to be stuck with two parties who refuse to even acknowledge the problems pain patients face, much less address them. 

Can Ketamine Treat Fibromyalgia Pain?

By Pat Anson

At a time when the medical and recreational use of ketamine is coming under more scrutiny from law enforcement, a new study highlights its potential value as a treatment for fibromyalgia pain.

Ketamine is an anesthetic drug that is only FDA-approved for depression and anesthesia. But in recent years ketamine infusions are increasingly being used “off-label” for severe chronic pain conditions such as Complex Regional Pain Syndrome (CRPS).

In a small systematic review (a study of studies), researchers in Brazil found that ketamine infusions were safe and effective in relieving fibromyalgia pain. The review was small – just 6 clinical trials involving 115 patients – because ketamine has rarely been considered as a treatment for fibromyalgia due to its potency. Ketamine infusions require constant medical supervision because they put patients into a temporary dream-like state that can lead to hallucinations and out-of-body experiences.

But the Brazilian researchers found the side effects from infusions were mild and short-term, with some fibromyalgia patients experiencing pain relief that lasted for days or weeks.

Fibromyalgia is a poorly understood condition that causes widespread body pain, fatigue, insomnia, brain fog and mood disorders. The FDA has approved only three medications for fibromyalgia, two antidepressants (Cymbalta and Savella) and a nerve drug (Lyrica), but many patients consider the drugs ineffective.

Could ketamine be another option?

“Ketamine infusions might be a reasonable therapeutic approach for short-term relief of symptoms but unsatisfactory at inducing long-term analgesia in FM (fibromyalgia) patients,” the Brazilian research team reported in Advances in Rheumatology. “Future studies that evaluate the safety and effectiveness of ketamine in FM are desired for long-term follow-up. In patients refractory to conventional therapy, ketamine infusions might be a reasonable therapeutic approach.”

A recent case study suggests ketamine does have potential as a long-term treatment. A 68-year-old woman with fibromyalgia experienced “significant, widespread pain relief” after receiving several ketamine infusions over a two-week period. She continued getting infusions twice a week for the next year.    

“Pain relief has persisted under this regimen, along with a demonstrable improvement in quality of life, a reduced use of morphine, and the cessation of anti-depressant medication. This case indicates that long-term ketamine infusions show promise for chronic pain management and that more longitudinal studies on this treatment are warranted,” researchers reported.

‘Targeting and Investigating Doctors’

The positive news about ketamine is being overshadowed by the investigation into the death of actor Matthew Perry, who drowned in a hot tub last year after getting three ketamine injections in one day – none of them while under medical supervision.  Five people, two of them doctors, were recently arrested in connection with Perry’s death, including an alleged drug dealer known as the “Ketamine Queen.”

Perry had long struggled with substance abuse issues, but federal prosecutors say the defendants “were more interested in profiting off Mr. Perry than caring about his well-being.”  The two doctors charged in the case both surrendered their DEA licenses and can no longer prescribe controlled substances.      

In a recent appearance on CBS’ Face the Nation, DEA Administrator Anne Milgram likened Perry’s death to the opioid crisis, claiming that his doctors were ultimately responsible.  

“It started with two unscrupulous doctors who were violating their oath, which is to take care of their patients, and instead supplying Matthew Perry with enormous quantities of ketamine in exchange for huge amounts of money. And then it switched to the street where Matthew Perry was buying the ketamine from two drug traffickers,” Milgram said.

“Every single day, (we) are targeting and investigating doctors, nurse practitioners, others who are violating this duty of trust to their patients by over prescribing medicine or prescribing medicine that isn't necessary.”

Milgram also claimed that ketamine “has a high potential” for addiction. While experts agree the drug can be abused, ketamine is not an opioid and does not suppress respiration, the leading cause of an overdose.  

Kamala Harris’ Stepdaughter Draws Backlash for Advocating Pain Treatments

By Crystal Lindell

Ella Emhoff, the 25-year old stepdaughter of Vice President Kamala Harris, recently revealed that she has chronic back pain and shared a list of ways that she tries to address it. 

It’s a move that could give a boost to patient advocacy, especially if her stepmother moves into the White House.

Emhoff’s social media posts about pain and her lengthy list of potential treatments have gotten some pushback in the media, in part because one of the things Emhoff advocates for is ketamine infusions for chronic pain. The anesthetic has been a hot topic recently for its role in the drowning death of actor Matthew Perry. Last week prosecutors brought charges against five people who helped supply Perry with ketamine. 

Emhoff shared her chronic pain story via Instagram, where she has nearly 400,000 followers, writing that she was born with a tethered spine, which caused her back to not properly lengthen when she was growing up. That, in turn, caused kyphosis, an abnormally formed spine also known as a “hunchback.”

Emhoff said she was in and out of doctors’ offices for physical therapy for most of her adolescence, and then eventually got lower back surgery, which led to her growing taller. But she still has chronic back pain. 

After receiving a lot of responses to sharing her story, she then followed-up by sharing a link to a Google Doc list of pain management options, which she calls “The Big Pain Management List.” 

“Alright the responses have been COMING IN HOT. It's actually very comforting seeing how many people can relate to chronic pain and also very sad," Emhoff wrote, sharing a disclaimer about her list.

"These are all just recommendations made to me. These should not be taken as medical advice. I am just a girl tryna feel less pain."

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Emhoff’s list is broken down into six categories: devices, topicals, exercises, lifestyle changes and books. Most of the recommendations are probably common knowledge to anyone who's been dealing with chronic pain. But the list still offers a good, well-organized resource for anyone looking for new or old ideas to relieve pain. 

Under devices, she includes a firm mattress and red light therapy pad. For topicals, she suggests lidocaine patches and salt baths. Under exercises, Emhoff includes things like weighted squats and pilates. For lifestyle, she recommends things like shorter work days, “weed” and an anti-inflammatory diet. 

The therapies column is where she lists ketamine infusions, as well as somatic therapy and EDMR therapy. Under books, she recommends “The Pain Management Workbook" and “The Way Out.”

Personally, I find it a little disappointing that Emhoff never mentions one of the most effective pain treatments we have: opioid-based pain medication. It’s not as though she was worried about being controversial, given her inclusion of ketamine therapy. Perhaps opioids aren’t helpful for her, but they are helpful for millions of others dealing with chronic pain. 

Regardless, I’m always glad to see anyone with influence drawing awareness to the suffering those of us with chronic pain endure. My hope is that she will be able to push her powerful stepmom to advocate for broader access to some of her recommendations, such as ketamine and cannabis. 

Of course, because of Emhoff’s visibility and political connections, some publications covered her pain management suggestions as though they were controversial.  

The Daily Mail headline read: “Kamala Harris' woke step daughter pushes ketamine and shorter working days in excruciating Gen Z rant.”

The New York Post headline read: "VP Kamala Harris’ stepdaughter Ella Emhoff pushes ketamine, ‘shorter work days’ in ‘pain management’ rant."

It’s a little disappointing to see those types of headlines around the topic of chronic pain. My guess is that many of Emhoff’s followers suffer from chronic pain, and many of them may even benefit from her recommendations. But headlines like that can scare people away from trying treatments like ketamine, which is normally used for depression but some people find very useful treating some types of chronic pain. 

Thankfully, Emhoff has the ability to reach out to pain patients directly through her social media. So even if other media entities try to frame her suggestions in a poor light, she’s still able to get her message out to those who need it.

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. 

A Neurosurgeon’s Explanation of Why He Quit His Job Goes Viral

By Pat Anson

A former neurosurgeon who quit his job due to stress, anxiety, and a growing awareness that he wasn’t helping patients has become an internet sensation this summer.

“Dr. Goobie” (not his real name) posted a video on YouTube last month, explaining why he abandoned his practice and lucrative career performing surgeries on patients with chronic back problems.

“I had good partners. I had good hospitals that I worked at, but something was not right. I was very unhappy. On the surface, it didn't make sense. I was getting paid very well. It was a very well-respected job. I had good colleagues, had good support, but I was the most unhappy that I've ever been,” says Goobie, while on a hike swatting away mosquitoes with snowcapped mountains in the background.

Goobie’s video has gone viral with over 11 million views and nearly 64,000 comments, most of them expressing support for his decision to leave a high stress job in healthcare. His story is also a cautionary tale for anyone considering spinal surgery.

Goobie doesn’t give many personal details, but says he is 40 years old and lives in Washington state. He went to undergraduate school at the prestigious Massachusetts Institute of Technology (MIT), where he studied the potential for robotic arms and legs. When Goobie saw that wasn’t practical as a career, he enrolled in medical school to study neurosurgery.   

“Your job is to relieve suffering,” one of Goobie’s professors would say, an idealistic view of medicine that he shared and aspired to.

In practice, however, after his residency and nine years of performing surgeries, Goobie became disillusioned. It dawned on him that most of his patients with chronic back problems, like degenerative disc disease and spinal stenosis, weren’t getting better.

“I had learned all these fancy spine surgery techniques to do all this incredible surgery work through tiny cuts. It's called minimally invasive spine surgery,” Goobie explained. “I helped a lot of people out, but there were way more people that I couldn't help.

“There are so many people with back problems; neck pain, back pain, nerve pain down their arms and legs. Surgery might make them better for a little bit, but it didn't address what caused that disc to wear out, or the disc to bulge, or the joint to get loose, or the disc in between the bones to disappear, or the bones rubbing on each other. Surgeries don't address that.”

The Leaky Roof Problem

A colleague likened Goobie’s dilemma to a house with a leaky roof. Rain will ruin drywall and cause extensive water damage. You can replace drywall, take out moldy insulation and clean up the interior of a house, but if you don’t fix the leaky roof, the same problem will keep repeating itself.

“That's what I was doing. And the way I realized that is that I could do a perfect surgery, and some people would get better, some people would stay the same, and some people would get worse,” said Goobie.

“Some people would get better before I could operate on them. Even with gigantic bulging discs, they would get better. If I scheduled the surgery a month out, they would sometimes call me a week before surgery and say, ‘Hey Doc, you know my nerve pain is gone. Do I still need to do surgery?’ And that was very confusing to me.”

Why did some patients get better without surgery? Goobie started asking patients detailed questions about their lives and learned the ones who got better had low-stress, healthy lifestyles. They slept well, exercised regularly, had diets low in fat and salt, didn’t smoke, didn’t drink much, and had strong social networks.    

“DR. GOOBIE”

“And I saw that the people who did that, they would heal so quickly that I couldn't operate on them. I mean, sometimes I could, but if I was booked three or four weeks out, a lot of times people who were doing that, they would heal before I could do the surgery,” Goobie said.

“And the opposite was true. The patients that smoked like a chimney. They sat on the couch and they ate hot dogs all day. They had no friends. They were super stressed out. And they didn't sleep well. Those patients, I could do a really good surgery and I would get them temporarily better, but six months or a year later, the same part of their back would have a recurrent problem. Or a different part, a different joint in their back, would have a similar problem. And I would operate on them, and they might get better for six months, and then the same thing would happen. This is the leaky roof problem.”

The problem with the healthcare system, according to Goobie, is that it’s not designed to fix leaky roofs. It needs sick patients who stay sick.

“I'm not knocking any hospital or group that I worked with. I had the privilege to work with really amazing people in amazing hospitals, amazing institutions. But the way that everything is set up is that the hospital needs to make money. They need to grow economically,” said Goobie.

“The problem there is that if you figure out a way to help patients heal, in a way that doesn't include a pill or a surgery, then the hospital and the doctor are in big trouble. Because if you figure out a way to help people heal and you can't charge them for it, then you've just worked yourself out of a job.”

Hero or Snake Oil Salesman?

Other doctors applauded Goobie’s video, calling him “courageous” and “a hero” for speaking out.

“I really commend his approach to medicine and his goal of putting patient care and his own health first. That is not easy to do,” said Dr. John Y.K. Lee, who specializes in brain surgery.   

But some took offense at Goobie’s video, saying he made “numerous false claims” about the effectiveness of spinal surgery.

“He claims that degenerative spine changes can all heal with rest and nutrition, which is simply wrong,” Dr. Tyler Cole, a spinal neurosurgeon, said in a YouTube video of his own. “We all experience degeneration that can be delayed with good health, nutrition and exercise. But it is not magically reversed. You can’t regrow a disc that’s been worn down, despite what a YouTube snake oil salesman tells you.

“The biggest red flag is that he said his patients didn’t do well. If his patients aren’t doing well, it’s his own fault. Not every patient improves, but if a doctor is discouraged about many of his patients doing poorly, to the point of burning out, the doctor is to blame. It’s not some conspiracy to the point of making people sick.”

Goobie is currently unemployed and uncertain about his future. But he’s lost weight, sleeps better and feels much happier. He spends a lot of time outdoors hiking in the Cascade Mountains with his dog, Doobie.

He’s even launched a YouTube channel – appropriately called “Goobie and Doobie” -- in which he shares dozens of beautiful nature videos that feature bubbling streams, mountain meadows and high-altitude hiking..

“There are an infinite number of ways to go up the mountain and reach the peak. But there is only one peak,” Goobie explains. “We are all trying to get to the same place. It's okay to take different paths. We can all learn from each other.”

Goobie hopes his videos will help people sleep better, relax and refocus. It’s the prescription he learned from patients for his own healing.

“I found that hearing those nature sounds really helped; helped me feel better, helped me process what was going on better, be more present and aware, and release that stress and anxiety’” Goobie says. “That's how I came to where I am now. By letting go of neurosurgery, I am able to be outside and be healthier. My dog is able to live a fuller life, and I figured out a way that I can help relieve people's suffering.”

Just like his professor told him.

A New Therapy Can Help Relieve Painful Emotional Trauma

By Laurel Niep

If you’ve been to a therapist’s office in the past few years, there’s a good chance you’ve heard of eye movement desensitization and reprocessing, or EMDR, therapy.

Most commonly used for treating long-standing and acute traumas, EMDR is also being shown to help with some kinds of chronic pain.

A growing body of studies shows that EMDR can be used to effectively treat a variety of conditions, such as substance abuse, specific phobias and anxiety that occurs alongside symptoms stemming from a trauma. More studies are needed, but results so far are encouraging.

I’m a trauma therapist who was trained in EMDR in 2018. Since then, I have consistently used this approach with dozens of clients to work through trauma and deeply held negative core beliefs.

EMDR and Traditional Therapy

Eye movement desensitization and reprocessing was developed in 1987 by Dr. Francine Shapiro after she discovered that moving her eyes from her left foot to her right as she walked – in other words, tracking her feet with each step – resulted in lower levels of negative emotions connected with difficult memories, both from the more recent frustrations of the day and deeper events from her past.

Conventional treatments, such as cognitive behavioral therapy or dialectical behavioral therapy, rely on extensive verbal processing to address a client’s symptoms and struggles. Such therapy may take months or even years.

Depending on the trauma, EMDR can take months or years too – but generally, it resolves issues much more quickly and effectively. It is effective for both adults and children, and can be done remotely.

EMDR is an evidence-based therapy that can help people process trauma in ways that other forms of treatment cannot.

EMDR has the capacity to work faster by targeting negative thoughts and emotions in combination with what is called bilateral stimulation – that is, the use of eye movements, tapping, audio or tactile sensations to process the emotions.

The most common form of bilateral stimulation is when the patient holds their head steady and uses their eyes to follow the therapists’ finger movements back and forth. Patients may also wear headphones that alternate music from ear to ear, or a tone that goes back and forth. Another common technique is having the patient hold a small buzzer in each hand that alternates vibration back and forth. Sometimes, therapists alternate tapping on each of the client’s hands or knees.

Some practitioners equate it to adding conscious thought to what the brain is trying to do during rapid eye movement, or REM, sleep. During this stage of sleep, the eyes go back and forth under your closed eyelids as you’re dreaming.

How EMDR Works

Researchers are still working out exactly how and why EMDR is effective at helping patients heal from trauma.

Trauma is a physiological and psychological response to an event where one perceives a threat to their safety – or to someone close to them – that is so severe, it overwhelms their capacity to cope.

The traumatic event can give rise to various symptoms that affect daily life, such as anxiety, depression, mood swings, intrusive thoughts, hypervigilance, difficulty sleeping or changes in appetite or weight. Sometimes, the person has thoughts of self-harm or suicide.

The trauma can also leave one with various triggers – sights, smells, sounds, locations, phrases – that bring up memories of the event. This causes the person to relive the emotions or reactions they had when the trauma initially occurred, as if it’s happening again.

For example, on a stroll through a crowded mall, someone who had been assaulted months earlier might catch a whiff of the same cologne the perpetrator was wearing. As the smell of the cologne triggers them, they suddenly feel like they’re experiencing the assault again, including physical sensations and seeing images of the event.

Dislodging Trauma

Memories of traumatic events often become stuck in the brain’s limbic system, where the fight, flight and freeze response resides. This is not the place where memories are intended to be stored. Here, the memory is triggered by various experiences in daily life – a similar sound, smell, sight or sensation – that can make the client feel as if the trauma is happening again in that moment.

Targeting the traumatic memory while engaging in bilateral stimulation during EMDR allows the brain to highlight and move the memory from the limbic system – where it cannot effectively connect to other critical information or memory networks – to the prefrontal cortex and other cortical brain regions where the memory is better able to be processed and supported.

Certain places, disturbing noises or large crowds can trigger traumatic memories.

EMDR therapy is a multistep process. Together the patient and therapist first identify targets, meaning the specific traumatic memories to be addressed during the reprocessing phase.

Next, the patient is asked to associate the event with a negative thought about themselves linked to the trauma. For example, I might say, “And when you think about the worst part of that event, what is a negative thought you have about yourself?” Often something comes up along the lines of “I’m unlovable,” “I’m worthless” or “I’m not worth protecting.” The patient is also asked to identify and locate any physical sensations they might be having in the body.

Then the therapist will ask the client to focus on all three of those things – the specific trauma memory, the negative thought about themselves and where they feel it in their body – while applying some form of bilateral stimulation.

EMDR in Practice

Although trauma therapy is a very individualized experience, research shows that 80% to 90% of clients can process – meaning resolve – a singular traumatic event with only three sessions of this therapy. In one initial study study from 1998, past experiences such as post-traumatic stress disorder from combat were resolved in 77% of participants after 12 sessions. Other research suggests that for patients who have suffered chronic trauma or abuse, more treatment time is likely needed to resolve the symptoms stemming from the trauma they survived.

In this context, resolve means that the target thought or memory has been cleared and the impact should be greatly reduced – not that the person will no longer have any negative thoughts or emotions about it.

If a patient has multiple traumas, I’ll ask them to identify the memories that stand out the most. The therapist will start with the earliest of those memories and work toward present day. One memory at a time is focused on, and once it has been completely processed – there’s no more disturbance in the body when thinking of the memory – then the therapist and patient move on to the next one.

One of my patients had struggled with devastating childhood memories of verbal, emotional and physical abuse by their parents. This consistently affected their relationships with family and peers into adulthood. After working with EMDR, the patient was able to process the haunting memories, gain insight on setting boundaries with others, and provide comfort and guidance to the young child they once were.

Another patient was a high school student, afraid to leave the house after enduring an assault on the way home from school. Concrete, visible changes began after the second session. School attendance became more consistent; grades improved. “I don’t understand what’s happening,” said the patient. “It’s like magic. I’m not so scared anymore.”

But EMDR is not magic. It is a unique strategy that allows the client to approach the trauma in a different way. The client is able to think about the events they are affected by and engage with the support of the therapist without having to verbalize each detail of their trauma.

Finding EMDR Specialists

If you’re considering trying out eye movement desensitization and reprocessing therapy, find a therapist who is trained or certified for this treatment. The EMDR International Association website has a list of them, though there are many other qualified therapists not affiliated with that organization, and you could ask about a clinician’s credentials before beginning treatment with them.

If you’re struggling daily with past trauma or deeply held negative beliefs about yourself, are willing to delve into those difficult emotions and would like to try a different type of therapy backed by research, I would strongly recommend giving EMDR a chance.

Laurel Niep, LCSW, is a Trauma Therapist and Senior Instructor with the Stress, Trauma, Adversity Research, and Treatment (START) clinic in the Department of Psychiatry at the University of Colorado School of Medicine.

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