The Pros and Cons of Medical Marijuana

By Joanna Mechlinski, Guest Columnist

If you live with chronic pain, chances are someone has mentioned medical marijuana to you. And why shouldn’t they? It’s constantly being discussed in the media.

So far, 36 states have legalized medical marijuana, and many have extended the qualifying illnesses to include some chronic pain conditions. A 2021 Pew Research Center survey found that 91% of American adults approve of the use of cannabis for medicinal purposes. And a recent Gallup poll found that over two-thirds of adults believe marijuana should be legal for both medical and recreational use.

So to the average person, trying to be helpful, it might seem that cannabis is a simple and obvious answer to a pain patient’s prayers. Unfortunately, it doesn’t work that way for everyone.

In 2019, my rheumatologist suggested I try medical marijuana. Considering that I’d been living with chronic pain for over fifteen years, thanks to lupus and polymyositis, and tried all sorts of medications and treatments to no avail, I was understandably excited.

Although I’d had my hopes dashed numerous times already, I still continued to feel a tiny bit of hope whenever a doctor suggested something new. Maybe, just maybe, this would be the thing that would help alleviate my life of never-ending pain and fatigue. If so many other people were turning to medical marijuana, surely it had to be a good thing?

Like many other pain patients, I was tired of the constant battle to prove I “deserved” opioid painkillers. I was also tired of never daring to mention the fact that opioids were the main reason I was still a productive member of society. Many people choose to ignore that fact and focus instead on the potential for addiction.

Unfortunately, it’s not as if you can just walk into a marijuana dispensary and be handed a life-altering concoction. There’s a lot more to it, much of which no one ever seems to mention.

For starters, not every medical professional is legally permitted to certify a patient for cannabis, which is required in many states. You need to find a doctor or APRN (advanced practical registered nurse) who is --- and it’s usually not cheap.

Here in Connecticut, the practitioner I saw charged $175 for new patients and $125 for a renewal. Then, along with your application, you need to send the state $100. This gets you a medical marijuana certificate, good for only one year, if you have a “debilitating medical condition” recognized by the state.

Different states charge different prices and your certificate or license can last longer, depending on where you live. There are also some discounts - again, not everywhere - for veterans and low-income individuals. Still, the various costs can add up quickly, and they are not covered by insurance.

Your first visit is a consultation, at which you and a staff member discuss your condition and symptoms. Unfortunately, it’s not a one-size-fits-all kind of thing. Your body may react differently to a particular marijuana strain or product than another person suffering from similar symptoms.

So, if you’re like me, you may have to try a wide variety of tinctures, oils, vapes and other products. Each will cost, on average, between $50-$100 for a few weeks’ dosage. You can only pay with cash or a debit card.

Over two years, I returned to the dispensary numerous times, hoping the next product might be the one. But at best, there was just a slight improvement. I was wanting so badly for cannabis to work that it might have solely been in my imagination.  

At any rate, I wasn’t willing to keep paying large amounts of money for something that was causing me about 5% improvement at best.  More realistically, it was probably closer to zero.

Does all this mean you shouldn’t give medical marijuana a try? Of course not. If you and your doctor feel it may alleviate your pain and is a good option, you should definitely give it a try. Just keep in mind there are a lot of factors to consider, and patience is definitely key to the process.

Joanna Mechlinski is a former journalist who currently works in school transportation. She lives with lupus, polymyositis and fibromyalgia, and is passionate about advocacy. 

Pain News Network invites other readers to share their stories with us. 

Send them to: editor@PainNewsNetwork.org. 

Why Doctors Need to Address Stigma and Guilt Caused by Chronic Pain

By Dr. Joseph Cabaret, Guest Columnist

Chronic pain is known to affect more than one in five American adults. That’s about 50 million people who feel pain most days or every day – leaving them trapped in a cycle of physical pain. Worse yet, a recent study found that those suffering from chronic pain often deal with guilt-induced feelings and social stigma as a result of it.

To those unfamiliar with the reality of living with chronic pain, feeling guilt over such a condition may seem strange. But the reasons for it become pretty obvious once you reflect on them and recognize the harm they cause. Guilt-induced feelings can lead to severe mental health issues and social stigma that debilitate a chronic pain sufferer's life even more.

What can medical professionals and the general public do to alleviate these issues?

Chronic pain is typically described as long-term pain that lasts at least three months and has no end in sight. It is both a physical and an emotional experience, although sadly the emotional component is rarely addressed adequately by patients or healthcare professionals.

Pain is often attributed to physical illnesses such as fibromyalgia, back problems, irritable bowel syndrome, post-surgical pain, cancer, arthritis, or even just headaches or migraines. Usually, the underlying emotional causes or contributors go undetected, and since there is often no easily discernible tissue damage present, its existence is not always obvious to a casual observer. But it is ever-present and can severely impact an individual's ability to live a full life.

Therapy, rather than a cure, is often the only recourse chronic pain sufferers have. This can take the form of art, music, or other hobbies and passions the patient has. The aim is simply to take their minds off the pain and give them an emotional outlet.

For many chronic pain sufferers, the worst part is not being able to plan for future events because they can’t predict how they will feel on a particular day. This leads to missed workdays, cancelled social events, and an ever-increasing downward spiral in their mental health.

Chronic Pain and Mental Health

Having to live with such a condition is bound to have negative consequences. Patients often suffer from depression, feelings of inadequacy, negative changes in identity, and difficulties with getting enough sleep.

Then there’s the added frustration of often not being able to make others understand the reality of their experience. To make matters worse, it is difficult for most patients to understand and acknowledge the impact that these psycho-social-spiritual factors have on their lives and why biomedical therapies alone don’t help. This can lead to feeling that they are somehow to be blamed.

Pain-related guilt often stems from a patient’s inability to convince others that their condition is legitimate. Since the causes of the pain are often not readily apparent (even after a medical examination), patients are sometimes treated like their condition is not real.

Doctor’s appointments often lead to a long line of questions that can make patients feel like a fraud or that their condition is entirely psychosomatic. This isn't helped either by the social stigma that sometimes puts the blame on the patient for not managing their condition well enough. Then there’s the personal guilt a patient can feel from not being able to fulfill their duties and responsibilities at home or at work.

Left unchecked, all of this can lead to severe mental health issues that can result in drug or alcohol abuse, total mental breakdown, and even suicide. It’s a facet of the nation’s ongoing mental health crisis that is too often ignored. 

How to Help Patients Address Guilt

In terms of addressing the chronic pain itself, there may be very little that doctors, family members or co-workers can do for someone. It is often simply something they must learn to live with. But there is a lot that can be done to lessen the patient’s feelings of guilt from their condition.

To start with, care should be taken to provide validation and reassurance that the patient's chronic pain is real. Chronic pain sufferers need to feel listened to and understood if they're to have any chance of living well with their condition.

By integrating behavioral health treatment with pain treatment, physicians can have a clearer understanding of what a patient is going through and what treatments are working. Through gentle and skillful counseling, patients can also learn to connect their pain to their emotional difficulties and better address them without the guilt that comes from misguided statements implying “it’s all in your head.”

Using technology for remote monitoring can be of help with this, providing a better understanding of a patient’s physical and mental condition, and leading to more valuable insights and better long-term care.

A better public awareness of the social stigma that chronic pain sufferers must deal with would also go a long way in helping them deal with their condition. Family members, friends and co-workers can help in this by refraining from criticizing or stigmatizing those with chronic pain. Instead, make them feel understood, validated and respected. They have so much to deal with, and a few kind words and social support can go a long way in making things easier for them.

With better awareness and understanding may come new treatments for chronic pain. Pain medicine is still a relatively new field, and much work remains to be done on understanding the causes of it and how it can be treated. Until then, often the best that medical professionals and the general public can do is make chronic pain sufferers feel less stigmatized and more understood.

Joseph Cabaret, MD, is a pain and addiction medicine specialist at Wellbrain, a digital health platform for doctors. WellBrain's founding Stanford, Harvard and Mayo Clinic trained physicians designed WellBrain to help providers assess, engage and monitor their patients’ physical and mental health over time.

Dr. Cabaret’s private practice is located in Camarillo, CA, where he specializes in Interventional Pain Management, Regenerative Medicine, and Addiction Medicine.

Pain News Network invites other readers to share their stories with us. Send them to: editor@PainNewsNetwork.org. 

How to Improve Pain Control with Adhesive Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

Some persons with Adhesive Arachnoiditis (AA) feel that more pain relief drugs, particularly opioids, will solve their problem. The fact is that we regularly review cases in which persons with AA are taking 2 or 3 opioids or even have an implanted intraspinal canal pump that contains fentanyl or Dilaudid, but they still don’t get enough pain relief to get out of bed and function.

AA is an intraspinal canal inflammatory disorder in which cauda equina nerve roots are glued by adhesions to the inside of the spinal canal covering. This definition tells it all. AA is fundamentally intraspinal canal inflammation, so unless the initial inflammation is suppressed or extinguished, it will likely continue to spread and cause more pain.

In essentially every case of failing pain control, we find that the person is doing little or nothing to suppress intraspinal canal inflammation and repair damage to their nerve roots and spinal canal covering.

First Steps in Pain Control

Our research is clear. A person with MRI-documented AA can’t expect adequate pain relief unless they have a definite, daily routine to simultaneously suppress intraspinal canal inflammation and repair tissue damage to cauda equina nerve roots and the spinal canal covering.

Adequate pain control to have a good quality of life can be difficult to achieve. The first step is to obtain a list of drugs, botanicals, hormones, nutrients and physical measures that are popular in the AA community and that either suppress inflammatory or restore damaged tissue. Share your list with your family and medical practitioner. You may have to try multiple agents to develop a program that gives you better pain control.

Persons who have AA and poor pain control also need a blood test for inflammatory markers, glucose, and the hormones cortisol, pregnenolone, DHEA and testosterone.

If your pain is constant, review our Intractable Pain Syndrome website that is totally dedicated to relief from constant pain.

How to Diagnose AA

I’m pleased to announce the release of a new handbook that takes the mystery out of diagnosing AA with contrast MRI imaging once and for all. I have read hundreds of contrast MRI’s during my years in medical practice, and have found that the earlier a diagnosis is made and treatment is started, the better the prognosis is for the patient.

Unfortunately, many health care practitioners don’t know the telltale signs of AA when it appears in an MRI. As a result, AA is often misdiagnosed as “Failed Back Syndrome” or “Low Back Pain.”

“Handbook to Recognize Adhesive Arachnoiditis” is an essential read for all practitioners who are interested in treating patients with spine disorders and patients who suspect they may have AA. It’s presented in a clear and easy to read format as a “how to” guide for reading contrast MRI’s for the diagnosis of AA.

The book is filled with clearly diagrammed MRI images of documented cases of AA and should help practitioners diagnose AA and learn the difference between AA and other spine disorders with similar symptoms.

This book will also help those patients who suspect they may have AA receive a quick and proper diagnosis, thus preventing delays in effective treatment of this devastating spinal cord disease. AA is no longer rare. It is in every community, and health care practitioners can now learn how to diagnose and treat it. There is hope and help!

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from a bulletin recently issued by the Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should send an email to tennantfoundation92@gmail.com.

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

Supreme Court Case May Decide Future of Opioid Prescribing

By Pat Anson, PNN Editor

Over a dozen patient and physician advocacy groups have filed legal briefs with the U.S. Supreme Court in support of two doctors appealing their convictions for criminal violations of the Controlled Substances Act.

The nation’s high court has consolidated the cases of Dr. Xiulu Ruan of Alabama and Dr. Shakeel Kahn, who practiced in Wyoming and Arizona. Both doctors were sentenced to lengthy prison terms after being convicted on a variety of charges – including the prescribing of high doses of opioid pain medication to patients “outside the usual course of professional practice.”

Oral arguments will be heard by the Supreme Court on March 1, with a decision expected later in 2022. Monday was the deadline for interested parties to file “amicus curiae” briefs on the case, which could have a significant impact on opioid prescribing practices nationwide if the appeals are successful. Many doctors have stopped or reduced their prescribing of opioids because they fear being prosecuted under the Controlled Substances Act (CSA).

“It is no exaggeration to say that CSA prosecutions of physicians have already impaired the treatment of chronic pain,” Ruan’s attorneys said in their appeal. “In response to the opioid crisis, fear of prosecution has increasingly prompted pain management doctors to avoid or reduce opioid prescriptions, even when those decisions leave chronic pain patients without recourse.”

A successful appeal would mean Ruan and Kahn could ask for new trials, along with dozens of other doctors convicted of similar charges under the CSA.

“It will also avoid what I see as the chilling effect that it’s had on lots of doctors who are not doing anything even remotely suspicious, but are afraid that they are going to get caught because they prescribe a higher dose, and so they’re dropping people from care or tapering them,” said Kate Nicholson, Executive Director of the National Pain Advocacy Center (NPAC).

NPAC, along with other advocacy groups and the U.S. Chamber of Commerce, are asking the high court to clearly state how the practice of medicine should be regulated under the CSA. Some argued it is best left to state medical boards, not federal prosecutors or law enforcement.

“Patients with pain, addiction, or both desperately need appropriate care and treatment. If practitioners are held strictly liable under (the CSA), patient abandonment will become ever more common as practitioners act to avoid scrutiny,” Jennifer Oliva and Kelly Dineen, professors of health law and policy, said in their brief. “Progress in medical care in these areas can only recover if the regulation of medical practice is returned to the province of the states except in narrow circumstances.”

‘Good Faith’ Practice

At issue in the Ruan/Kahn case is what constitutes the “standard of care” and “usual course of professional practice” under the CSA. Doctors traditionally have been given wide latitude in determining what’s appropriate for a patient, as long as they act in “good faith” with a medical purpose. But that laissez-faire approach came to an end as the overdose crisis intensified and doctors came under more scrutiny for their opioid prescribing practices. 

“No other country criminalizes physician behavior like the federal prosecutors have done in the US. This is especially the case as these prosecutions are all based on a whim with an ‘expert’ opinion rendered by a hired government expert and orchestrated by a new generation of overzealous and unchecked federal prosecutors pointing fingers at wealthy doctors as greedy drug pushers and fraudsters,” Physicians Against Abuse argued in its brief.

“Doctors are just a ‘sitting duck’ for these federal prosecutors who raid medical offices and unlike the career drug pusher on the streets who gets caught and charged with one or two counts, federal prosecutors pile up count after count because doctors are required to keep records and those records are used against them in these out of control prosecutions against physicians.”  

Pain Clinic ‘Factory’

Complicating Ruan’s appeal is that he often gave patients Subsys, an expensive and potent fentanyl spray that was only approved by the FDA for breakthrough cancer pain. Ruan prescribed Subsys “off label” to patients who didn’t have cancer, which made him an easy target for federal prosecutors who were building a massive fraud and bribery case against Insys Therapeutics, the manufacturer of Subsys.

In his new book, “The Hard Sell: Crime and Punishment at an Opioid Startup,” author Evan Hughes depicts Ruan as a greedy and ruthless physician who was more interested in acquiring luxury cars and Insys stock than he was in treating patients. According to Hughes, Ruan and his business partner ran their pain clinic and adjoining pharmacy like a factory.

“Instead of collecting a mere $200 or so for an office visit, Couch and Ruan treated each patient as a profit center, an opportunity to bill for tests and procedures in-house, or to refer out to some other provider who would cut them in on the business. They reinvested to grow their factory, buying new machines that added lucrative capabilities,” Hughes wrote.

In addition to the charges against him under the CSA, Ruan was convicted of taking kickbacks from Insys in exchange for prescribing “massive quantities” of Subsys. Ruan was one of the top prescribers of Subsys in the United States.

Kahn was convicted of more than 20 counts involving excess prescribing of oxycodone and other controlled substances, and running a criminal enterprise that resulted in the death of a patient. When federal agents raided his properties in Wyoming and Arizona, they found firearms and over $1 million in cash.

Advocates hope the Supreme Court will overlook the seedier aspects of both cases and rule in a way that clearly defines the rights of doctors under the CSA to prescribe medications they deem appropriate.

“I think our biggest concern is having the correct standard moving forward so that doctors have space to practice medicine appropriately and patients stop suffering,” Nicholson told PNN. “My guess is that they’ll do something to clarify, but how objectively or subjectively they go, I think that’s anyone’s guess.”  

Steep Cuts in Opioid Prescribing ‘Raises More Questions’

By Pat Anson, PNN Editor

Several studies in recent years have documented how opioid prescribing has declined significantly in the United States, with per capita consumption of opioid medication recently falling to its lowest level in two decades.

For the first time, a new study by the RAND Corporation breaks the decline down by medical specialty, showing that some doctors may have gone too far in their effort to reduce opioid prescribing and lower the risk of abuse and addiction.

“Oftentimes when I do studies, I think we have a clear answer. This one in my mind raises more questions,” says Bradley Stein, MD, a senior physician researcher at RAND and lead author of the study published in the Annals of Internal Medicine.

Stein and his colleagues looked at opioid prescriptions filled at U.S. pharmacies in 2008-2009 and compared it to prescriptions filled in 2017-2018. Over that period, per capita morphine milligram equivalent (MME) doses for opioids fell by over 21% nationwide.

What surprised researchers is that many doctors treating patients with cancer pain, acute trauma pain or surgery pain significantly reduced their opioid prescribing even though most federal and state guidelines didn’t call for it.

The influential and much criticized 2016 CDC opioid guideline, for example, only applies to primary care physicians who treat chronic non-cancer pain. Yet emergency physicians, psychiatrists and oncologists cut their opioid prescribing significantly more than primary care providers and pain specialists.

MME Decline By Medical Specialty (2008 to 2018)

• -70% Emergency Physicians

• -67% Psychiatrists   

• -60% Oncologists  

• -49% Surgeons 

• -41% Dentists    

• -40% Primary Care Providers

• -15% Pain Specialists     

Stein attributes the steep decline in opioid prescribing not just to the CDC guideline, but to state regulations and insurance company policies. While some of the decline was appropriate, he thinks it may have gone too far.   

“There are probably populations where a decade ago, someone may have given 30 days of opioids, where maybe 3 days or 7 days would be fine. Or maybe they didn’t need to prescribe it at all,” Stein told PNN. “But there are other populations for whom several days of opioids may very well be appropriate. And those are individuals that probably we should not be seeing substantial decreases in. An example is individuals with late-stage cancer.”

The CDC guideline specifically says it is “not intended for patients undergoing active cancer treatment, palliative care, or end-of-life care.” But in practice, many of those patients are being forced to follow the CDC’s recommended dose limits. Some get no opioids for pain relief. A recent study in Oregon found a significant decline in opioids being prescribed to terminally ill patients being admitted to hospice care.

“The blunt policy approach that called for reduced opioid prescribing across-the-board clearly affected some medical specialties more than others. But even patients receiving palliative care have felt the negative impact of opioid policies that have lacked nuance and depth,” says Dr. Chad Kollas, a palliative care specialist in Florida who has called federal opioid policy an “abject failure” because it has not reduced overdose deaths. 

“Patients with cancer and sickle cell disease who are fortunate enough to have a palliative care physician still face challenges filling prescriptions for controlled pain medications at many pharmacies.” 

PNN readers may be familiar with the story of April Doyle, a terminal breast cancer patient who posted a tearful video online after she was denied opioids at a Rite Aid pharmacy in 2019. Doyle went to another pharmacy and her prescription was filled, but only after a lot of unnecessary physical and emotional pain. She died the following year. 

Geographic Variability

Another surprise uncovered by RAND, a nonprofit research organization, is the extreme variability of opioid prescribing from state to state and county to county.

The map below shows a checkerboard pattern across the United States, with counties in blue showing a 50% or more decline in opioid prescribing, and counties in red showing a 50% or more increase from 2008 to 2018.

Change in County Per Capita MME (2008-2018)

RAND CORPORATION

Per capita opioid prescriptions declined the most in large metropolitan counties (-22.6%) and in counties with higher rates of fatal opioid overdoses (-34.6%).

But even in states that were hit hard by the opioid crisis, such as West Virginia, Ohio and Kentucky, there are blue counties where prescribing fell significantly right next to red counties where opioid prescriptions spiked. Kansas and Missouri have more red counties than blue.  

“It was eye-opening to see the variation across states and counties,” said Stein. “We’re seeing variation by payer. We’re seeing variation by community. We’re seeing variation by type of prescriber. And I think this is a reminder to us all that this is probably an issue where one-size-does-not-fit all.  

“And I think coming to a better understanding of that will help us make sure that while we’re appropriately decreasing the amount of opiates being prescribed for people whose pain we can manage effectively in different ways, the decrease has been greater than it needs to be for some populations. We need to make sure that people who need adequate pain management get it.”

The RAND study was funded by grants from the National Institutes of Health.

No One Deserves to Suffer from Chronic Pain

By Victoria Reed, PNN Columnist

Recently I had a conversation with a family member who suffers from chronic pain. He said that he “deserves” the pain, because it resulted from certain actions and choices he made as a young person. He went on to say that my chronic pain isn’t “fair” because I did nothing to cause it.

I was astonished that he would actually feel that way. Does anyone really deserve to live a life with chronic pain? Surely, not!

He’s right in saying that I did not do anything to cause my pain. I just happen to have genetics that contribute to the development of certain illnesses, particularly the autoimmune kind. This runs strongly in my family. My sisters have multiple autoimmune illnesses, including rheumatoid arthritis (RA), lupus, type 1 diabetes and fibromyalgia. My mother suffered from untreated fibromyalgia as well. In addition, my daughter has been diagnosed with fibromyalgia.

Obviously, none of us did anything to cause our illnesses, nor the pain that comes from having them.

While this particular family member may have made some questionable choices as a teen that caused injuries and persistent pain well into adulthood, he doesn’t deserve chronic pain. It’s not uncommon for teen boys to engage in risky behavior, and I’ve told him that his pain is no less important and no more deserved than mine. 

While there can be many, many causes of chronic pain, compassion must be given to each and every patient, regardless of the cause. Life happens! Whether it’s the result of a genetic-based illness, an automobile crash or some other accident or injury, no one deserves to live in pain. Even if the incident that caused your pain was due to your own negligence or carelessness, it is still valid pain, and treatment is as justified as it is for any illness.   

RA Drug Shortage Continues 

On the flip side, I have been experiencing continued difficulty getting my RA medication. Actemra (tocilizumab) is a biologic drug that was created specifically to treat RA, and the IV form has been my mainstay treatment for many years. However, there is still a worldwide shortage of Actemra because it’s been repurposed to treat covid patients. According to a statement by Genentech, the drug’s manufacturer, there will most likely be continued shortages throughout the pandemic.  

At one point during the summer of 2021, Genentech reported a “temporary stockout” of Actemra IV in the U.S. because so much of it was being used for covid patients. During that time, I was forced to switch to a different form of treatment. But even after switching to a subcutaneous self-injection, whenever I attempted to refill my prescription, my pharmacy informed me that the medication is “long-term out of stock.”  

This formulation was not approved by the FDA’s Emergency Use Authorization to treat covid, but it appears that it is indeed being used for that purpose and is frequently unavailable to RA patients. To say that this is frustrating would be an understatement!  

While covid is no doubt a serious illness, untreated RA with its systemic inflammation is also very serious. This runaway inflammation can, and often does, do damage to the heart, lungs and eyes. Untreated and poorly treated RA is also associated with a 10 to 15 year decrease in life expectancy.   

It’s understandable why doctors are currently experimenting with older, established medications to treat covid.  Fortunately, researchers have discovered that some of these older medications have been helpful and do decrease the severity of the virus. However, existing users of any particular medication shouldn’t lose access or have their necessary prescriptions significantly delayed. RA patients are no less important than covid patients.  

Chronic illness is a common problem that affects millions of people worldwide. But depending on where you live and what your condition is, you may not receive the same level of treatment and may not be taken as seriously as you’d like. No longstanding pain should be ignored, as untreated and under-treated pain will undoubtedly lead to other problems, such as depression, anxiety and even suicide. The risk of suicide also increases when patients are forced to taper off of opioids.  

The one thing that we all have in common is that we are human beings, and no matter what the chronic pain condition is, everyone deserves to be treated humanely and compassionately, just as any animal in pain would be. Nobody ever “deserves” to suffer. 

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

A Gift to Be Revered

By Carol Levy, PNN Columnist

I was thinking, “It's Christmas time. I'm supposed to be happy.”

Instead, I am by myself in the parking lot, observing others walking with friends, enjoying each other, and the frivolity of the season. And I am jealous.

I hear the laughter as they walk past me, reveling in the joy of the holiday.  And I am jealous.

I feel the biting cold, as I watch them pull scarves tight around their necks, pulling them up over chins and around their ears. Others tugging on their hats to keep out the cold. And I am jealous.

This is my holiday, alone, unable to enjoy the cold and the fun of the season. My pain has left me mostly housebound. I rarely go out, not a conscious choice, but one the pain made for me. I don't want to go out when I am in pain. I don't want to go out when the pain is quiet because I don’t want to trigger it.

Alone in my house, there is no one to befriend me. I have no family, they abandoned me years ago. Despite all the brain surgeries for my trigeminal neuralgia, they still think I am lazy and a malingerer. Friends I had long ago moved, died or the relationships just ended, as often happens in the normal scheme of things.

My pain is in my face. It doesn't allow me to wear a hat or pull a scarf around my ears and face. Winter and Christmas add to the litany of so many other things the pain has stolen from me.

For many people, parties await and shopping expeditions abound, anticipating the great morning of everyone around a tree, opening gifts and squealing at the wonderfulness of what they received. But they are anathemas to us.

It is not that we hate the excitement, the time spent with others celebrating, the fun of seeing all the decorations and storefronts with their mystical, musical displays. It is that we hate the pain.

It is knowing that if we say yes to the offer of going to a party, walking around the stores or exploring the neighborhood, we are saying yes to the pain. We are agreeing to put ourselves in what, for us, is danger.

And that makes Christmas not so much fun. 

“Attention must be paid,” wrote Arthur Miller in “Death of a Salesman.”  Willy Loman, the main character, was just a regular person.

“Not the finest character that ever lived,” his wife says to his sons. “But he’s a human being, and a terrible thing is happening to him. So attention must be paid.”

We are human beings and pain is the terrible thing that has happened to us. And attention must be paid.

If there is no one else, I and the pain community hear each other. We pay attention. And that is a gift to be revered.

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.

Microplastic Particles Linked to IBD

By Pat Anson, PNN Editor

Microplastics — tiny bits of plastic so small they are invisible to the naked eye --- can be found in our food, water and even the air we breathe. But research is only beginning on the prevalence and health effects of plastic particles in humans.

A 2020 study found that babies fed formula from plastic bottles swallowed millions of microplastic particles every day. And a recent review that looked at the impact of microplastics on human cells found evidence of cell death, immune response and damage to cell walls.

“We are exposed to these particles every day: we’re eating them, we’re inhaling them. And we don’t really know how they react with our bodies once they are in,” lead author Evangelos Danopoulos, a postgraduate student at Hull York Medical School in the UK told The Guardian.

For the first time, Chinese researchers have now found evidence that people with inflammatory bowel disease (IBD) have more microplastics in their feces, suggesting that plastic particles in the digestive tract could play a role in the development of Crohn’s disease and ulcerative colitis.

Researchers obtained fecal samples from 52 people with IBD and 50 healthy people from different geographic regions of China. They found that feces from the IBD patients had significantly more microplastics than the control group – an average of 41.8 particles per gram in the IBD group vs. 28 particles in healthy people. People with more severe IBD symptoms had higher levels of microplastics. Their particles also tended to be smaller.

ENVIRONMENTAL SCIENCE AND TECHNOLOGY

Researchers surveyed both groups and found that people who consumed more bottled water and takeaway food, and were often exposed to dust had more microplastics (MPs) in their feces. The two most common types of plastic found were polyethylene terephthalate (PET; used in bottles and food containers) and polyamide (PA; found in food packaging and textiles).

Still unclear is whether exposure to microplastics causes or contributes to IBD, or whether people with IBD simply accumulate more microplastics in their digestive tracts because of their disease.

“We conclude that the plastic packaging of drinking water and food and dust exposure are important sources of human exposure to MPs. Furthermore, the positive correlation between fecal MPs and IBD status suggests that MP exposure may be related to the disease process or that IBD exacerbates the retention of MPs,” researchers reported in the journal Environmental Science & Technology.

The prevalence of IBD is rising around the world. A 2015 CDC study estimated that about 3.1 million adults in the U.S. were diagnosed with IBD, nearly double the 1.8 million Americans who reported having IBD in 1999. The researchers found an association between IBD and people with lower income and education levels, but did not look into the role of microplastics.

‘Letters of Protection’ Can Saddle Patients with Medical Debt

By Fred Schulte, Kaiser Health News

Jean Louis-Charles couldn’t afford spine surgery to ease nagging neck and back pain after a car crash. So he signed a document, promising to pay the bill with money he hoped to get from a lawsuit against the driver who caused the collision.

That never happened.

Louis-Charles, 68, died hours after the operation at a South Florida outpatient surgery center in March 2019. The surgery center had put him in an Uber with his wife, Marie Julien, according to depositions. After a 60-mile ride home, he collapsed, court records show.

Her husband’s death left Julien to deal with more than $100,000 in medical debt, as described in the “letter of protection,” or LOP, that Louis-Charles had signed.

In signing an LOP, people generally pledge to cover the costs of their care even if it exceeds what they win in a lawsuit or other settlement — and even if the prices are far higher than most doctors would charge.

The agreements are legal and binding in many states, though Florida appears to be the epicenter of their use in personal injury cases. Advocates say the letters throw a lifeline to low-income people who need vital medical care for injuries caused by the negligence of others and don’t have the money or insurance coverage to pay for it. Doctors and surgery centers that accept LOPs say they often wait years for a lawsuit to settle before being paid, if at all.

A KHN investigation found that letters of protection can saddle patients with medical debt — and drive a personal injury care system that operates with little oversight despite widespread complaints of grossly inflated billings and other problems that can place patients at risk.

Marie Julien blamed Dr. Kingsley R. Chin — a controversial Hollywood, Florida, surgeon who has accepted LOP payments for more than a decade — for her husband’s death after the spinal fusion procedure. Last year, she filed a malpractice suit against Chin alleging that Louis-Charles died after he “was discharged home while still in pain and with signs and symptoms of post-operative complications.” In court papers, Chin denied any negligence.

“We felt that the way the whole thing happened was very bizarre,” Julien, 71, a certified nursing assistant, recalled in a deposition taken in the case.

A ‘Terrible Situation’

Just before 8 a.m. on New Year’s Day 2018, Louis-Charles’ car was stopped at a red light near his home. Suddenly a white police vehicle, driven by a Palm Beach County Sheriff’s Office detective, backed into his Toyota Corolla, hitting the passenger side door, according to a police report.

In her deposition, Julien said Chin operated on her husband’s shoulder in 2018. But that didn’t help much, and Chin recommended more extensive surgery, she said. “I wasn’t happy at all with that idea,” she added.

Julien said she relented because Louis-Charles’ pain was getting worse “day by day” and he had confidence in the surgeon. The Aventura Surgery Center in Hallandale, Florida, where Chin had served as medical director, sent an Uber to collect the couple the morning of March 12, 2019, Julien said.

During the two-hour spinal fusion, Chin replaced three disks with an implant he invented, according to his deposition. The patient spent an hour or so in a recovery room before a nurse wheeled him out to a waiting Uber just after 3 p.m., according to Chin’s testimony.

Louis-Charles couldn’t speak, but signaled he was in pain and struggled to breathe during the hourlong ride home, according to Julien’s deposition. She helped him walk through the front door of their Riviera Beach home. Once inside he collapsed, she testified.

A fire rescue crew rushed him to a hospital in West Palm Beach, where he died just after 5:30 p.m., according to a Palm Beach County Medical Examiner’s autopsy report. The medical examiner ruled the death an accident caused by “post-surgical bleeding with airway compression.”

In his deposition, Chin said that Louis-Charles “looked great” heading out to the car and that traveling along the urban Interstate 95 corridor the driver was “at any given time probably within 10 minutes or so” from a “major hospital or emergency room.”

Chin called the outcome a “terrible situation” and told Julien’s lawyer during the deposition: “I just hope you can appreciate how much I regret what happened.”

Asked how her husband’s death has affected her life, Julien said: “How can you find words to explain such a thing?” The couple wed in 1987 in Miami after moving from their native Haiti, where he worked as a house carpenter.

“It’s been almost two years now. I have not been able to sleep on [the] bed” she shared with him, she said.

In late September, Julien and Chin settled the suit under confidential terms and the bills were “written off,” according to Kevin Smith, an attorney who represented Julien. Chin has denied any liability.

‘A Mixed Bag’

Though little-known to the public, letters of protection are commonly used to finance major medical care in personal injury cases, including costly orthopedic surgery.

Attorneys who refer injured clients to willing doctors say the liens are their best tool for ensuring clients not only gain access to care, but also are in a position to win fair settlements from insurance companies that fight to minimize their liability and costs.

An LOP form used by some Florida medical providers says they agree to wait for payment as a “courtesy” to the injured person, adding in boldface: “We understand insurance companies have unlimited resources, will hire defense lawyers and defense experts that will cause our payment to be delayed for months or years.”

The business community and insurers counter that LOP providers grossly inflate their medical fees to give juries a false picture of the costs of medical care.

“The sole purpose of the LOP, why it exists, is to drive up verdicts and settlements,” Lauren McBride, a lawyer for Publix Super Markets, a chain with more than 800 stores in Florida, testified in a state legislative hearing in February 2019.

McBride said that nearly two-thirds of “slip-and-fall” injury claims in Publix stores involve letters of protection. In more than half those cases, the injured person had some form of insurance but declined to use it, she said. In some cases, injured people traveled long distances for costly care they could have received closer to home at far less expense, she said. She also argued that LOPs give doctors an incentive to overtreat patients “to keep driving up medical bills” — and persuade juries to award big verdicts.

Kevin Leahy, an Austin, Texas, lawyer who has researched the practice there and represented clients on both sides of the debate, said LOPs deserve more scrutiny. “It’s a mixed bag,” he said. “There are definitely abuses going on. There are also hurt people getting care they need to get better.”

Leahy said LOPs have helped create a “liability-based” health care network with few checks on its financial dealings or other standards. He called it “unregulated, opaque and not fully accurate about charges.”

Across the country, LOPs have been tied to a range of alleged medical overcharges or other billing abuses, court records show.

Nearly 200 women from 42 states, for example, have joined a class-action suit that alleges doctors and lawyers talked them into signing LOPs promising to pay for surgical removal of pelvic mesh — whether they needed it removed or not.

The women allege that the doctors billed sky-high rates and told them their insurance would not cover the cost, so signing an LOP was the only way to safeguard their health. Private insurance would have paid about $8,000 for these services, far less than the $76,000-plus the women were charged under the LOP, according to the suit, filed in late August. The case is pending. Six doctors have filed motions to dismiss the case.

In a 2020 federal civil case, evidence emerged that a Texas spine surgeon charged nearly $400,000 under an LOP for procedures that Medicare would reimburse at less than $20,000, court records state.

Reviewing court cases in Florida, KHN found dozens of examples in which patients who signed LOPs alleged they were later sued for payment of excessive fees or received substandard medical care.

‘Unnecessary and Dangerous’

On the day of his spinal surgery, Louis-Charles signed a letter of protection that read in part: “While I am injured and need care, I cannot financially afford to pay your bill at the time services are rendered, I therefore, grant this provider a lien on my claim against any and all proceeds from any settlement, insurance benefits or judgment.”

The documents said he would be charged “what is usual and customary for our area.” But the fees were much higher than private health insurance would cover or what the Medicare fee schedule provides for.

HANNAH NORMAN FOR KHN

The Aventura Surgery Center, co-owned by Miami personal injury attorney Sagi Shaked, billed nearly $100,000 for the operation, court records show. Two other Shaked-affiliated companies billed more than $35,000 for surgical supplies and anesthesia, according to the court records. Shaked did not respond to numerous requests for comment. In his deposition, Chin said he no longer operates at the Aventura Surgery Center.

Mark Woodard, 54, who was rear-ended in an April 2017 car crash in Fort Lauderdale, had three spine operations at the Aventura Surgery Center performed by Chin under a letter of protection.

His bills topped $430,000, including $179,500 for the surgery center, $177,972 billed by Chin’s medical office and $39,327 for implants from SpineFrontier, a Massachusetts medical device company Chin owns, court records show.

“These charges are way out of line,” said Michael Arrigo, a medical billing expert in California asked by KHN to review Woodard’s bills. Arrigo said “usual and customary” charges would be less than one-fourth of what was billed.

Woodard, who has worked as a painter and maintenance technician at beachfront hotels in Fort Lauderdale, argues in his lawsuit that his injuries from the crash were “nothing more than cervical and lumbar sprains and strains … such that no reasonable physician would have performed surgery other than for monetary purposes.”

According to Woodard’s lawsuit, Chin persuaded him to have multiple operations and during one tore a 1-centimeter hole through a nerve root, leaving him in “extreme agony and excruciating pain.”

The suit, filed in March 2021, alleges the surgery center offered Chin a “safe haven to perform his unnecessary and dangerous surgeries.” It also alleges that Chin “was unable to perform surgery at any hospital in the state of Florida and most if not all surgery centers where he had applied had either denied him privileges or he had his privileges revoked at multiple hospitals.” In court filings, Shaked has denied the allegations and any liability.

Chin also has denied any negligence in court filings and in a deposition called the fees he charged “reasonable within the community.” Woodard’s lawsuit is pending in Broward County Circuit Court.

Chin has been sued repeatedly for medical negligence, including several cases involving LOPs. He has been sanctioned by physician-licensing boards in three states, unrelated to his use of LOPs.

In early December, the Florida Department of Health, which licenses doctors, issued Chin a “letter of concern” and fined him $8,000. The action settled a state administrative complaint alleging that in August 2019 Chin sent home a 73-year-old man who suffered from complications of spinal surgery who should have been transferred “to a higher level of care in an inpatient setting (such as a hospital).” Chin disputed the allegations.

Separately, federal agents arrested Chin in early September in Fort Lauderdale on kickback charges as CEO at SpineFrontier, which sells spinal implants he invented and used in operations on Louis-Charles and Woodard.

Chin has denied the civil allegations and has pleaded not guilty to the criminal charges. His attorney called Chin “a role model for aspiring Black professionals who have overcome great hardship and humble beginnings to achieve success through education, grit, and hard work,”

In October, a federal judge ordered Chin to post a $500,000 bond secured by his Florida home. He is free to travel within the country “for business purposes only” and may travel one time per month to Jamaica “only for the purpose of practicing medicine there,” the order states.

Chin has active medical licenses in Florida, Arizona, New Jersey, New York and in Jamaica, according to documents he filed with the court.

BROWARD COUNTY SHERIFF’S OFFICE

A ‘Complete Shock’

By its own account, the Broward Outpatient Surgical Center and its affiliates in Pompano Beach, Florida, have treated more than a thousand patients under letters of protection. But the billing practices — one lawsuit called its fees “astronomically unreasonable and inflated” — have been criticized in court filings for years. These cases often settle under confidential terms.

One patient argued in a lawsuit that injured patients were “bounced around” a web of affiliated clinics for services that included chiropractic care, pain injections, physical therapy and, finally, surgery, all done with no caps on the costs. The center denied the allegations, and the case has since been settled.

Albert Frevola, an attorney for the center, said that prior to treatment patients are given a price list and sign an agreement to pay the bills out of any settlement of their personal injury claims. He said the center serves many patients “who can’t afford to get medical care. It’s a service that is valuable and needed.”

Some three dozen former patients have filed a recent mass tort lawsuit alleging medical malpractice and billing fraud by the surgery center and its owners, chiropractors Brian and Craig Bauer, who are brothers. The suit also names spine surgeon Dr. Merrill Reuter, court records show. Neither Reuter nor his lawyer responded to requests for comment.

The patients allege they visited the center after a car crash or other accident and were persuaded to have spinal surgery. In some cases, the operations either were billed as more complex than they were, or not done at all, according to the suit. Patients often have run up bills of $100,000 or more under LOPs, court records show. “Due to the fact that personal injury patients rarely, if ever, use their private health insurance for such health care services, the Bauers and the Bauer entities were able to get away with charging inflated amounts,” according to the suit.

Frevola, who represents the brothers, said they “flatly deny” the allegations and “are sad and distressed that these accusations are being made by the same people they gave great care and medical treatment to.”

In a separate malpractice case, Terrell Harris, 37, alleged he was guided down a “treatment path” after a car crash in July 2017 that ended in surgery at prices “far beyond the scope of reason, let alone custom.” The center denied the allegations and filed a counterclaim accusing Harris of failing to pay for his care under the LOP.

The suit is one of eight pending in Broward County Circuit Court that make similar claims, including that of a woman who alleged she had the same pain after spinal surgery as she had beforehand. Nearly five years later, to her “complete shock,” an MRI found no evidence the operation she was billed for had been done, according to the suit.

In a February 2020 court filing in one of the cases, the center and Brian Bauer denied the allegations and called them “frivolous and scandalous.” They filed a counterclaim demanding to be paid for their services. The case is pending.

Warring Creditors

When fees are inflated under an LOP, patients can take home more money under an insurance settlement or jury verdict. But if a case settles for less than the sum of those bills, patients may be on the hook to pay the balance.

Lawyers who typically co-sign the LOPs try to persuade medical providers to reduce their fees, which often happens. When that fails, however, lawyers file a court action called an interpleader, which asks a judge to decide who gets what among warring creditors.

KHN reviewed dozens of Florida court cases in which medical creditors holding LOPs demanded payment in full. While many of these cases settled under confidential terms, court records show some accident victims ended up mired in debt or saw their damage awards drastically reduced by outsize medical billings and legal fees. In some cases, lawyers took home more than their injured clients.

That happened to Jose Merced, who fell and hurt himself after stepping into a hole outside his apartment in the Orlando area. He received a $75,000 settlement but incurred bills of more than $850,000 for operations and other medical costs, which he contested as “highly inflated,” court records show. The bills included more than $700,000 in orthopedic surgical and facility fees.

In August 2020, a judge allowed just over $35,000 to pay for the surgeries. Merced was awarded $10,000, while his lawyer got nearly $27,000, just over $18,000 of it for professional fees and the rest for expenses.

In some interpleader cases, lawyers asked judges for one-third of the total settlement for their fees, plus expenses, which can add hundreds, if not thousands, of dollars more to their share.

A law group founded by South Florida personal injury lawyer Robert Fenstersheib filed at least 50 interpleader cases in Broward County Circuit Court between January 2019 and October of this year. Fenstersheib, who was a fixture of local television ads as the “lawyer who listens,” was shot to death by his son in a murder-suicide in September 2020, though his Fenstersheib Law Group still operates under his relatives.

Many of the LOP patients now suing the Broward Outpatient Surgery Center and its owners were clients of the Fenstersheib firm, court records show. The center and the law firm did business for years, but the center sued the law firm in 2019 alleging the lawyers failed to pay it millions of dollars owed under LOPs. The law firm responded that it was a victim of a $6.5 million embezzlement by former employees who pocketed settlement money meant for the center. The suit was settled under confidential terms this year.

Federal prosecutors filed criminal charges against two former Fenstersheib employees in connection with the theft. In late November, one of the men, Michael Wihlborg, a 47-year-old high school dropout who had worked for the law firm for nearly two decades, admitted receiving more than $2.1 million in stolen funds from the scheme; he pleaded guilty to one count of conspiracy to commit wire fraud and three counts of filing a false income tax return, court records show. He faces up to 29 years in prison, according to court records. Co-defendant Matthew Matlock pleaded guilty to similar charges on Dec. 15, court records show. The law firm had no comment.

Ethics Question

Some lenders also accept LOPs as collateral for patients who borrow money to tide them over while their personal injury case winds through the courts, which typically takes years. Interest charges pile up fast.

A Miami man who was injured after a pile of wood fell on him at a home improvement store borrowed $51,400 from a finance company backed by an LOP in September 2014. He owed the company $140,322 three years later because of an interest rate of 18% charged every six months, court records show.

Doctors also can generate cash from letters of protection. While they argue they must wait years for payment, some spine surgeons sell the liens on a burgeoning medical debt market.

Court records in Florida show millions of dollars of these liens have changed hands when doctors sold them. Buyers paid 10% to 25% of the total amount of the bill and gambled they would be able to collect a tidy profit once a patient’s lawsuit was settled.

The ethics of doctors wheeling and dealing in patient bills and having a financial stake in the outcome of litigation has been questioned. An American Medical Association policy says such deals are unethical because “there is the ever-present danger that the physician may become less of a healer and more of an advocate or partisan in the proceedings.”

Dr. Scott Lederhaus, a retired California neurosurgeon who has reviewed personal injury cases for the defense, said some patients argue in depositions that under an LOP they never saw bills, so they had no idea of the extent of the medical costs they were incurring over time.

Lederhaus said there is little agreement on what is a reasonable medical fee and, as a result, doctors “are able to charge whatever they want” in personal injury cases.

And it remains unclear whether the No Surprises Act, which Congress passed last year amid a national outcry over huge and unexpected medical bills, offers patients who signed LOPs any protection.

“A lot of these doctors are under the impression they can do whatever they want and there’s not going to be any oversight by anyone,” Lederhaus said.

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

Experimental Gene Therapy Could Cure Sickle Cell Disease

By Pat Anson, PNN Editor

Experimental gene therapy is helping sickle cell patients develop normal red blood cells and could potentially be a cure for the disease, according to research recently published in The New England Journal of Medicine.

In early-stage Phase 1 and 2 clinical trials at the University of Alabama at Birmingham, 25 patients treated with a gene therapy called LentiGlobin produced stable amounts of red blood cells containing hemoglobin after a single infusion. 

Sickle cell disease is a genetic disorder that causes red blood cells to form in a crescent or sickle shape, which creates painful blockages in blood vessels that can lead to anemia, infections, strokes and organ failure. About 100,000 Americans live with sickle cell disease, primarily people of African or Hispanic descent.

Unlike other gene therapies that edit or silence genes, LentiGlobin adds a modified gene that reprograms the diseased blood cells.  

“In this therapy, we do not change or edit the gene that causes sickle cell disease,” says Julie Kanter, MD, director of the UAB Adult Sickle Cell Clinic. “Instead, we use a viral vector to deliver a new gene that will make a healthy hemoglobin — a beta hemoglobin — into the stem cell. This is like coding new instructions into the cell.”

The new hemoglobin -- called HbAT87Q -- is slightly different from regular hemoglobin and is less likely to cause red blood cells to be misshaped.  The HbAT87Q can also be measured more accurately inside the cell, allowing doctors to know how much of the new hemoglobin a patient is making on their own.

Although the gene therapy looks promising, researchers say more advanced studies are needed to make sure LentiGlobin is safe and effective long-term. 

“In an earlier part of this study, we were not able to get enough of the new gene into each cell,” explained Kanter. This caused the blood cells to be stressed and for some patients to still have symptoms of sickle cell disease. Two patients in the initial group developed leukemia.  

“We need to see that we have fixed this problem, says Kanter. “We also need to make sure this procedure both reduces pain/stops all pain crisis and prevents organ damage from sickle cell. This will take time. We will have to watch people for the next two to 15 years and measure their organ function compared to those who did not get this therapy.”

A 2020 report by the National Academies of Sciences, Engineering, and Medicine called for major changes in the way sickle cell disease is treated in the U.S. Compared to other chronic illnesses, stem cell disease has received little attention from the healthcare community, resulting in a lag in the development of new treatments.

Many stem cell patients also feel stigmatized when they have a pain flare and go to an emergency room, because ER staff are often ignorant about the disease and believe patients are seeking drugs.

“People with sickle cell disease have endured unnecessary hardship for more than 100 years. They have fewer medications and therapies than many other diseases and have received much less attention and funding. We need new and better options for people with sickle cell disease,” said Kanter.

Bone marrow and stem cell transplants are currently the only cures for sickle cell disease, but it’s often difficult to find good donors. Fewer than one in five people with the disease have compatible donors.

Why Complicated Chronic Pain is Different

By Dr. Forest Tennant and Ingrid Hollis

As 2021 comes to a close, we wish to summarize what we personally consider to be the greatest issue in pain management. Physicians have observed for centuries that some chronic pain conditions are not only more severe than others, but some cause excruciating, constant pain that casts the poor suffering individual into a humbled, bed-bound state.

Unfortunately, throughout the past half-century or so, many concerned parties, whether intentional or not, have tried to lump all pain patients into one category, saying they all have persistent or chronic pain. This has led to calls for “one size fits all” treatment and inflated statistical figures on the number of pain patients who need help (i.e., 50 or 100 million Americans).

The Real Issue

Chronic pain has traditionally been defined as pain that continues past the normal healing time for an injury or disease, which is about ninety days. There has been no generally accepted separate classification as to the severity, constancy or periodicity of pain that lasts longer than 90 days. Consequently, chronic pain surveys and statistics always include persons with the common, mild to moderate painful afflictions such as bunions, carpal tunnel, fibromyalgia, headaches, TMJ, irritable bowel, back strains, plantar fasciitis, and mild neuropathies and arthropathies.

Cries of undertreatment of these common chronic pain problems ring hollow, since every community has a plethora of medical practitioners, pharmacies, health food stores and fitness centers that tend to vast number of persons who have these common pain problems.

It may also be why all of the recent lobbying and advocating for “chronic pain” doesn’t seem to connect with the body politic, because the vast majority of chronic pain patients are getting adequate care. This is not to say that treatment for their common, mild to moderate conditions can’t be improved, or that their treatment isn’t needed.

The real issue, however, is that there is a sub-set of chronic pain patients who develop what can justifiably be called “complicated chronic pain.” Most have tried a plethora of treatment options but are left with severe, constant pain that has a specific set of pathologic complications. It is this group that is undertreated, poorly understood and needs advocacy, attention and treatment for their complicated chronic pain.

The Complications

The hallmark of complicated chronic pain is constant pain which is associated with cardiovascular, metabolic and hormonal abnormalities. Complications include hypertension, tachycardia, glucose elevations (pre-diabetes, and diabetes), and adrenal-gonadal hormone deficiencies including cortisol, estradiol and testosterone, among others. These complications can lead to heart attack, stroke, heart failure, autoimmunity, diabetes, obesity, depression, dementia and other health problems.

Thanks to modern research and science, we have a better understanding of why some unfortunate individuals transform from a mild, periodic chronic pain, to a constant, ferocious and disabling pain state. We now know that injured or diseased tissue from whatever initiating cause can generate bioelectricity that may enter the spinal cord and brain -- the central nervous system (CNS) – causing destructive inflammation that damages critical tissue sites that normally eliminate or control pain.

This development is called “neuroinflammation.” The transformation process in now often called “centralization” or “central sensitization.” Some pain specialists prefer to call complicated chronic pain “neuropathic pain.”

We Need a Name

A syndrome is a clinical state in which one pathologic defect causes multiple abnormalities and symptoms. Hence, we recently began calling the complicated chronic pain state the Intractable Pain Syndrome (IPS). The term intractable was first used by British physicians in the last century who championed treatment of severe incurable pain. The term intractable is now used in some laws and is in popular use in some pain circles.

There may be a better name than Intractable Pain Syndrome. Maybe we should just call it “Complicated Chronic Pain.” Regardless, understanding that inflammation can develop in the CNS and cause complicated constant pain is essential, as these patients need a different treatment approach from the more common, uncomplicated chronic pain patient.

Going forward into 2022, we define Intractable Pain Syndrome as “an inflammatory disorder of the central nervous system that causes constant severe pain and is associated with cardiovascular, metabolic and hormonal complications.”

Furthermore, we will advocate that this tragic syndrome be understood, and that its proper treatment demands not only symptomatic pain relief, but specific treatment of the disease that originated the syndrome, along with specific treatment of its complications. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on intractable pain and arachnoiditis. Ingrid Hollis chairs the editorial committee of the Tennant Foundation Research and Education Projects. She is also a family caregiver and advocate for those who suffer from rare diseases and intractable pain. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.     

Covid Lockdowns Hurt Women with Chronic Pain More Than Men

By Pat Anson, PNN Editor

Covid-19 lockdowns appear to have had a bigger impact on women living with chronic pain than men, according to a new study in Europe. Researchers say female patients experienced greater pain severity, as well as more stress, anxiety and financial uncertainty compared to men.

 “Our research suggests that the pandemic may have exacerbated chronic pain problems and some gendered inequalities,” says lead author Kordula Lang-Illievich, MD, from the Medical University of Graz in Austria. “With chronic pain affecting around 20% of the EU adult population, it is vital to understand how people living with chronic pain are being affected by the pandemic and to develop pain management interventions that clearly target women.”

To investigate how the first pandemic lockdown impacted chronic pain patients in Germany, Austria, and Switzerland, researchers invited adults taking part in self-help groups who experienced pain for at least one year to complete an online survey in July 2020. Of the 579 people who responded, over 75% were women.

Participants were asked to rate their pain levels before and during the lockdown using the 0-100 Visual Analogue Scale (VAS), as well as their pain management, physical activity, social and psychological health.

While the average pain intensity score before the lockdown was similar for men (46.5 on the VAS scale) and women (45), the increase in pain levels during the lockdown was much lower in men (0.8) than women (3.9).

“Our data clearly show that women experienced a higher aggravation of chronic pain during the first lockdown,” said Lang-Illievich. “This is likely to reflect the disproportionate impact of lockdowns on women, especially the extra caregiving responsibilities, rise in domestic violence, and their increased vulnerability to anxiety, depression and acute stress — all of which would be expected to impact pain symptoms.”

There are several limits to the study, including the over-representation of young women, single participants, and those with higher education, as well as the reliance on self-reporting. The research is being presented at Euroanaesthesia, the annual meeting of the European Society of Anaesthesiology and Intensive Care.

Does Childhood Trauma Increase Risk for Opioid Misuse?

By Pat Anson, PNN Editor

Did a parent humiliate or swear at you as a child? Were you ever molested? Did you live with a problem drinker or someone who went to prison? Were your parents ever separated or divorced?

Those are some of the questions posed to over 1,400 college students in a study by researchers at the University of Georgia, who wanted to assess the relationship between childhood trauma and the misuse of prescription opioids later in life.

Their research, recently published in the Journal of American College Health, found that most students had at least one adverse childhood experience (ACE). But those who reported four or more ACEs were almost three times more likely to misuse opioid medication.

Based on that finding, the researchers say healthcare providers should consider a patient’s experience with childhood trauma before prescribing them opioids.

“Our findings suggest need to include assessment of ACEs as a screening criterion for opioid prescription and administration among college-aged individuals,” wrote lead author Janani Thapa, PhD, an associate professor in UGA’s College of Public Health.

Many doctors already use screening tools to assess whether a patient is at risk for opioid misuse. They look up their prescription drug history, or ask patients if they’ve been sexually abused or have family members with a substance use disorder.

But Thapa and her colleagues think that assessment should go further, incorporating a wider range of childhood trauma, such as whether a patient didn’t have enough to eat or had to wear dirty clothes as a child.  

“Prevention of opioid misuse demands careful consideration of the traumatic exposure of the patient,” they said. “Current opioid assessment measures, including patient or family interviews, and prescription monitoring, may need to incorporate patients’ traumatic history for proper chronic pain management and integrated care.”

Penalizing Patients

The use of opioid screening tools is controversial. Some patients resent being asked about their childhood trauma – which they see as irrelevant to their health problems and pain management as adults.   

“I overcame my early life abuse until an ignorant doctor used that childhood abuse without psychiatric consultation to put labels on me and refuse medicine for pain,” one patient told us.

“Just because a patient may have been sexually abused or has family members who are addicts/alcoholics, does not mean the patient will be,” said another. “To penalize a person who is in excruciating pain due to no choice of their own, is cruel and inhumane.”

But a pain management expert says opioid screening tools have their place, because childhood trauma can have a lasting impact. 

“Most studies have shown that 4 in 5 people with an Opioid Use Disorder have at least one ACE,” says Lynn Webster, MD, past president of the American Academy of Pain Management and a PNN contributor. “I consider ACEs a form of post-traumatic stress disorder. It affects emotion regulation, causing an inability to modulate distressing emotions in a healthy and adaptive way. ACEs create a maladaptive response to stress. The earlier in life the ACEs occur, the more effect they will have later in life.” 

Over 20 years ago, Webster developed one of the first opioid screening tools for doctors, a short survey that asked patients if they had a history of substance abuse, sexual abuse, or any mental health issues. In his own practice, Webster found the survey helpful in identifying patients at risk of abusing opioids, but he later came to regret how the screening tool was “weaponized” against patients, particularly women, and used by other doctors as an excuse to deny patients opioids. 

“The Opioid Risk Tool (ORT) incorporates pre-adolescent trauma to help identify females who were at greater risk of OUD from what I believe is a form of PTSD. If I were to develop the tool today, I would probably make it gender neutral, but the increased risks for females would remain,” Webster said in an email. 

Webster agrees with the University of Georgia researchers that ACEs should be used to help assess whether a patient is at risk of abusing medication. But he says a high number of ACEs should not be used to avoid prescribing opioids to someone who has a medical need for them.  

Illicit Drug Use by Teens Fell Significantly in 2021

By Pat Anson, PNN Editor

Substance abuse by U.S. teenagers declined significantly this year, according to the results of a new national survey that found the use of prescription opioids by adolescents fell to the lowest level in nearly two decades.

Illicit drug use by 10th graders fell by nearly 12 percent in 2021, and by about 5% for eighth and 12th graders. The findings represent the largest one-year decline in illicit drug use by teens since the Monitoring the Future survey began in 1975.

The study by University of Michigan researchers found that teenagers reported increased feelings of boredom, anxiety, depression and loneliness in 2021 – no doubt fueled by pandemic-related fears and isolation. But unlike their adult counterparts, young people overall did not increase their use of marijuana, alcohol and other drugs.

“We have never seen such dramatic decreases in drug use among teens in just a one-year period. These data are unprecedented and highlight one unexpected potential consequence of the COVID-19 pandemic, which caused seismic shifts in the day-to-day lives of adolescents,” Nora Volkow, MD, Director of the National Institute on Drug Abuse, said in a statement.

“Moving forward, it will be crucial to identify the pivotal elements of this past year that contributed to decreased drug use – whether related to drug availability, family involvement, differences in peer pressure, or other factors – and harness them to inform future prevention efforts.”

The Monitoring the Future survey is given annually to students in eighth, 10th and 12th grades, who self-report their drug use behaviors and attitudes. The results from this year’s survey were collected from February through June 2021. Over 32,000 students enrolled in 319 public and private schools in the U.S. participated, with some taking the survey at home and others while at school.

The percentage of students who reported using any illicit drug other than marijuana within the past year decreased significantly. Among 12th graders, for example, 7.2% reported using an illicit drug in 2021, compared to 11.4% in 2020.

Decreases were also reported in the use of alcohol by 12th graders (46.5% in 2021 vs. 55.3% in 2020) and in marijuana (30.5% in 2021 vs. 35.2% in 2020).

Significant declines in use were also reported by students in 2021 for a wide range of drugs, including cocaine, heroin, hallucinogens, cigarettes and nonmedical use of amphetamines, tranquilizers, and prescription opioids.

The decline in drug use by teens is not a one-year fluke and is part of a long running trend. For example, the use of Vicodin by 12th graders has fallen by nearly 92 percent since its peak in 2003. The use of OxyContin has declined by 83% since its peak in 2005.   

MONITORING THE FUTURE SURVEY

“In addition to looking at these significant one-year declines in substance use among young people, the real benefit of the Monitoring the Future survey is our unique ability to track changes over time, and over the course of history,” said Richard Miech, PhD, who led the Monitoring the Future study at the University of Michigan. “We knew that this year’s data would illuminate how the COVID-19 pandemic may have impacted substance use among young people.”

Not all the news is good. The researchers found that adolescents who suffered severe stress, anxiety or depression due to the pandemic, experienced financial hardship, or whose parents used drugs were most likely to use drugs themselves.

Other studies have found that adults who regularly use recreational drugs increased their drug usage during the pandemic. A new study of alcohol sales in 16 U.S. states found a major increase in wine and liquor sales in the first few months of the pandemic, by as much as 20 to 40 percent in some states.

Another recent study found that opioid prescribing briefly increased in the early stages of the pandemic, as patients postponed corrective procedures and it became harder to obtain non-opioid therapies for pain such as massage and physical therapy. Opioid prescribing returned to previous levels after a few months.   

The CDC announced last month that the U.S. has seen over 100,000 drug deaths in the 12-month period ending in May, 2021. The record-high spike in overdoses is thought to be primarily a result of pandemic lockdowns and the continuing spread of illicit fentanyl.   

Cannabis Users May Risk Harmful Drug Interactions

By Pat Anson, PNN Editor

A recent survey found that nearly half of American adults (49%) have tried marijuana, a figure that has risen steadily in recent years as more states legalize medical and recreational cannabis. While the Gallup poll didn’t ask people why they used marijuana, it’s fair to say many are experimenting with cannabis products – and cannabidiol (CBD) in particular – as alternatives to mainstream medical treatment.

And that could be a problem for people with chronic pain and other illnesses, according to researchers at Washington State University, who found that CBD interferes with two families of enzymes that help metabolize pain relievers and other drugs prescribed for a variety of medical conditions. As a result, the medications’ positive effects might decrease or the drugs could build up in the body and become toxic.

“Physicians need to be aware of the possibility of toxicity or lack of response when patients are using cannabinoids,” said Philip Lazarus, PhD, a professor of pharmaceutical sciences and senior author of two new studies appearing in in the journal Drug Metabolism and Disposition.

“It’s one thing if you’re young and healthy and smoke cannabis once in a while, but for older people who are using medications, taking CBD or medicinal marijuana may negatively impact their treatment.”

One study focused on enzymes known as cytochrome P450s (CYPs), while the second study looked at enyzymes called UDP-glucuronosyltransferases (UGTs). Together, the two enzyme families help metabolize and eliminate more than 70 percent of the most commonly used drugs from the body.

The WSU researchers studied three cannabinoids — tetrahydrocannabinol (THC), cannabidiol (CBD) and cannabinol (CBN) -- and how they interact with CYP and UGT enzymes. Of particular interest to the researchers are the metabolites produced by cannabinoids as they break down in the body.     

“Cannabinoids stay in your body only for about 30 minutes before they are rapidly broken down,” said first author Shamema Nasrin, a graduate student in the WSU College of Pharmacy and Pharmaceutical Sciences. “The metabolites that result from that process stay in your body for much longer -- up to 14 days -- and at higher concentrations than cannabinoids and have been overlooked in previous studies, which is why we thought we should focus on those as well.”

The researchers found that cannabinoids and the major THC metabolites strongly inhibit several key CYP enzymes in the liver that play a role in metabolizing anti-cancer drugs, non-steroidal anti-inflammatory drugs (NSAIDs), antibiotics, anti-epileptics and other medications. Cannabinoids also inhibited two of the primary UGT enzymes in the liver.

Atlhough the liver is considered the most important organ for the metabolism of drugs, kidneys also play a vital role, clearing toxins and other drugs from the body. Researchers found that CBD blocked three enzymes that account for about 95 percent of kidney UGT metabolism.

“If you have a kidney disease or you are taking one or more drugs that are metabolized primarily through the kidney and you’re also smoking marijuana, you could be inhibiting normal kidney function, and it may have long-term effects for you,” Lazarus said.

The interactions between CBD and UGT enzymes could be especially risky for patients with acute kidney disease, kidney cancer or HIV, who may be using CBD to treat pain or to try to reduce the side effects from anti-cancer drugs.

“Taking CBD or marijuana might help your pain but could be making the other drug you’re taking more toxic, and that increase in toxicity may mean that you can’t continue taking that drug,” Nasrin said. “So, there could be serious ramifications for anti-cancer drugs, and that’s only one example of the many drugs that could potentially be affected by the cannabinoid-enzyme interactions we’re seeing.”

More research is needed to fully understand the drug-drug interactions that cannabis may have. Drugs.com has a list of 387 drugs that are known to interact with cannabis, with 26 categorized as major interactions and 361 described as moderate.

Medications known to have major interactions with cannabis include several opioids, such as codeine, fentanyl, buprenorphine, hydrocodone, methadone, morphine and oxycodone.