Hospitals Face Staff Shortages as Covid Surges

By Lauren Weber, Phil Galewitz and Andy Miller, Kaiser Health News

The Cleveland Clinic in Weston, Florida, on Jan. 11 was treating 80 covid-19 patients — a tenfold increase since late December. Nearly half were admitted for other medical reasons.

The surge driven by the extremely infectious omicron variant helped push the South Florida hospital with 206 licensed beds to 250 patients. The rise in cases came as the hospital struggled with severe staff shortages while nurses and other caregivers were out with covid.

The challenge is finding room to safely treat all the covid patients while keeping staffers and the rest of patients safe, said Dr. Scott Ross, chief medical officer.

“It’s not a PPE issue,” he said, referring to personal protective equipment like masks, “nor an oxygen issue, nor a ventilator issue. It’s a volume issue and making sure we have enough beds and caregivers for patients.”

Nationally, covid cases and hospitalizations are at their highest levels since the pandemic began. Yet, unlike previous covid surges, large portions of the patients with covid are coming to the hospital for other reasons. The infections are exacerbating some medical conditions and making it harder to reduce covid’s spread within hospital walls, especially as patients show up at earlier, more infectious stages of the disease.

Although the omicron variant generally produces milder cases, adding the sheer number of these “incidental” hospitalizations to covid-caused hospitalizations could be a tipping point for a health care system that is reeling as the battle against the pandemic continues. Rising rates of covid in the community also translate to rising rates among hospital staffers, causing them to call out sick in record numbers and further stress an overwhelmed system.

Officials and staff at 13 hospital systems around the country said that caring for infected patients who need other medical services is challenging and sometimes requires different protocols.

Dr. Robert Jansen, chief medical officer at Grady Health System in Atlanta, said the infection rate in his community was unprecedented. Grady Memorial Hospital went from 18 covid patients on Dec. 1 to 259 last week.

Roughly 80% to 90% of those patients either have covid as their primary diagnosis or have a health condition — such as sickle cell disease or heart failure — that has been exacerbated by covid, Jansen said.

Although fewer of their patients have developed pneumonia caused by covid than during the major spikes early last year, Grady’s leaders are grappling with high numbers of health care workers out with covid. At one point last week, Jansen said, 100 nurses and as many as 50 other staff members were out.

In one of New Jersey’s largest hospital systems, Atlantic Health System, where about half the covid patients came in for other reasons, not all of those with incidental covid can be shifted into the covid wards, CEO Brian Gragnolati said. They need specialized services for their other conditions, so hospital staffers take special precautions, such as wearing higher-level PPE when treating covid patients in places like a cardiac wing.

At Miami’s Jackson Memorial Hospital, where about half the covid patients are there primarily for other health reasons, all patients admitted for covid — whether they have symptoms or not — are treated in a part of the hospital reserved for covid patients, said Dr. Hany Atallah, chief medical officer.

Regardless of whether patients are admitted for or with covid, the patients still tax the hospital’s ability to operate, said Dr. Alex Garza, incident commander of the St. Louis Metropolitan Pandemic Task Force, a collaboration of the area’s largest health care systems. He estimated that 80% to 90% of patients in the region’s hospitals are there because of covid.

In Weston, Florida, the Cleveland Clinic is also having a hard time discharging covid patients to nursing homes or rehabilitation facilities because many places aren’t able to handle more covid patients, Ross said. The hospital is also having difficulty sending patients home, out of concern they would put those they live with at risk.

Hospital Infections

All this means there’s a reason that hospitals are telling people to stay away from the ER unless it’s truly an emergency, said Dr. Jeremy Faust, an emergency medicine physician at Brigham and Women’s Hospital in Boston.

The sheer number of patients who are showing up and don’t know they have covid during this surge is frightening, Faust said. As more incidental cases pour into hospitals, they pose a greater risk to staffers and other hospital patients because they are typically at a more contagious stage of the disease — before symptoms begin, Faust said. In previous covid waves, people were being hospitalized in the middle and later phases of the illness.

In Faust’s analysis of federal data, Jan. 7 showed the second-highest number of “hospital onset” covid cases since the pandemic began, behind only an October 2020 outlier, he said. But this data accounts for only people who were in the hospital for 14 days before testing positive for covid, Faust said, so it’s likely an undercount.

A KHN investigative series revealed multiple gaps in government oversight in holding hospitals accountable for high rates of covid patients who didn’t have the diagnosis when they were admitted, including that federal reporting systems don’t publicly note covid caught in individual hospitals.

“People in the hospital are vulnerable for many reasons,” said Dr. Manoj Jain, an infectious disease specialist in Memphis, Tennessee. “All of their existing underlying illnesses with multiple medical conditions — all of that puts them at much greater risk.”

The ER in particular is a potential danger zone amid the current crush of cases, Garza said. He recommended that patients wear high-quality masks, like a KN95, or an N95 respirator. According to The Washington Post, the Centers for Disease Control and Prevention is weighing whether to recommend that all Americans upgrade their masks during the omicron surge.

“It’s physics and math,” Garza said. “If you’ve got a lot of people concentrated in one area and a high viral load, the probability of you being exposed to something like that if you’re not wearing adequate protection are much higher.”

If patients can’t tolerate an N95 for an entire day, Faust urges them to wear upgraded masks whenever they come into contact with hospital staffers, visitors or other patients.

Dr. Dallas Holladay, an emergency medicine physician for Oregon’s Samaritan Health Services system, said that because of nursing shortages, more patients are being grouped together in hospital rooms. This raises their infection risk.

Dr. Abraar Karan, an infectious diseases fellow at Stanford, believes all health care workers should be mandated to wear N95s for every patient interaction, not just surgical masks, considering the rise in covid-exposure risk.

But in the absence of higher-quality mask mandates for staffers, he recommended that patients ask that their providers wear an N95.

“Why should we be putting the onus on patients to protect themselves from health care workers when health care workers are not even going to be doing that?” he asked. “It’s so backwards.”

Some hospital workers may not know they are getting sick — and infectious. And even if they do know, in some states, including Rhode Island and California, health care workers who are asymptomatic can be called back to work because of staffing shortages.

Faust would like to see an upgrade of testing capacity for health care workers and other staff members.

At Stanford, regular testing is encouraged, Karan said, and tests are readily available for staffers. But that’s an exception to the rule: Jain said some hospitals have resisted routine staff testing — both for the lab resource drain and the possible results.

“Hospitals don’t want to know,” he said. “We just don’t have the staff.”

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

Constant Pain Can Lead to Diabetes, High Cholesterol and Heart Problems

By Dr. Forest Tennant, PNN Columnist

Intractable Pain Syndrome (IPS) is constant pain with cardiovascular, metabolic and hormonal complications. Constant pain is a severe stressor that causes the adrenal hormones cortisol and adrenalin to rise in the blood as the body attempts to reduce stress.

These hormonal elevations can lead to serious metabolic consequences that need to be well known to persons who have IPS, as well as their family and medical practitioners. High levels of adrenalin cause blood pressure and the pulse rate to rise. When cortisol is elevated, it causes the hormone insulin and blood sugar (glucose) to rise in the blood.

If blood sugar remains too high for too long, a person can develop diabetes or pre-diabetes, which is often called “insulin resistance.” Most persons believe that diabetes is a metabolic disease and is unrelated to hormones. The fact is that insulin, cortisol and adrenaline are hormones.

In addition to diabetes, a person with constant pain is also at high risk of developing or experiencing any or all of the following: 

• Heart Attack

• Heart Pain (Angina)

• Stroke

• Dementia

• Arteriosclerosis

Some persons with IPS have died suddenly and unexpectedly, sometimes while asleep. Often these cases are falsely labelled as a drug overdose.

There are three reasons for sudden, unexpected death in persons with IPS who are undertreated and have cardiovascular, metabolic and hormonal complications.

• Cardiac Arrythmia

• Adrenal Failure          

• Hypoglycemia (Excess Insulin)

Every person with IPS needs to be evaluated for diabetes, pre-diabetes, hypertension, tachycardia and excess cholesterol. Steps must be taken to eliminate or reduce any or all of these IPS complications. Consult your medical practitioner at your earliest opportunity for an evaluation of these complications. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.     

Study Finds Opioids Not Always Needed After Heart Surgery

By Pat Anson, PNN Editor

It’s become common in recent years for U.S. hospitals to reduce or even eliminate the use of opioids for post-operative pain. For the most part, these non-opioid policies only apply to “minimally invasive” arthroscopic or laparoscopic surgeries, in which small incisions are made and patients are often sent home from the hospital the same day.

A new study by researchers at the University of Michigan suggests that many patients who have more complicated and invasive heart surgeries may also be able to control post-operative pain without opioids after they are discharged.

“In some cases, patients assume that after surgery, especially a big operation like cardiac surgery, that they will need to go home with prescription pain medicine,” said Catherine Wagner, MD, a cardiothoracic surgery resident at University of Michigan Medicine. “This study shows that discharge without opioid pain medicine after cardiac surgery is extremely well tolerated by some patients. In other words, we should not be reflexively prescribing pain medicine to people after surgery just in case they need it.”

Wagner and her colleagues looked at for over 1,900 patients who had coronary bypass and/or heart valve repair surgery at Michigan hospitals in 2019. Both procedures require a sternotomy, in which a doctor uses a saw to cut through the breastbone (sternum), which is then spread apart to gain access to the heart. When the surgery is finished, doctors reconnect the sternum with stainless steel wires. Full recovery from a sternotomy will usually take months.  

The study findings, published online in The Annals of Thoracic Surgery, showed that more than one-fourth of the surgery patients (28%) did not receive an opioid prescription at the time of discharge and used non-opioid pain relievers instead. Researchers say not getting an opioid appears to have been “well tolerated” by these patients, because less than 2% needed an opioid prescription before their 30-day follow-up appointment.

The study did not look at patient outcomes, whether patients were satisfied with their pain management, or if patients who did receive opioids developed signs of addiction or dependence. But researchers concluded that opioids were often not necessary after heart surgery.

“These data suggest that not all patients require an opioid prescription after cardiac surgery and that discharge without an opioid prescription is well tolerated in select patients. Cardiac surgery providers should consider shifting focus from the amount of opioid to prescribe to patients to instead determine which patients do not need any opioid prescription at discharge,” researchers concluded.

Before concerns rose about opioid addiction and overdose, it was common for surgery patients to be discharged with 50 to 100 opioid pills. Many of those pills would go unused.

“One should consider if these opioid prescriptions were truly necessary for patient pain relief,” said Wagner. “Our study shows that, particularly for patients who did not take any opioids on the day before leaving the hospital, discharge without opioids is safe. I think we need to ensure that only patients who truly need opioids get sent home with a prescription.”

Patients rarely become addicted to opioids after surgery. A large 2016 study found that less than one percent of older adults were still taking opioid medication a year after major elective surgery.  Another large study in 2018 found only 0.6% of surgery patients prescribed opioids were later diagnosed with opioid dependence, abuse or a non-fatal overdose.

A recent survey found nearly 8 out of 10 U.S. adults believe opioids are sometimes necessary to manage post-operative pain. Most people are more worried about treating surgical pain than they are about becoming addicted to opioids.

What’s Missing in ‘Opioids: The Big Picture’

By Roger Chriss, PNN Columnist

Canadian family physicians Mark Dubé and Henry Chapeskie recently created a video called “Opioids: The Big Picture” to give what they describe as a “short history of how we got into trouble with opioids, how even a small number of opioid pills can lead to addiction, and why they should not be used in non-cancer chronic pain.”

Drs. Dubé and Chapeskie spend the first third of their hour-long video on the history of opioids, mostly the 19th century Opium War in China, and the remaining time on modern prescription opioids. They refer to opioids as a “global environmental toxin” which cause “narcotic neurotoxicity.”

They also claim that opioid-induced hyperalgesia is common, that no studies show any benefit to opioids for pain management, and that opioids cause permanent brain damage. They argue that the current opioid crisis is driven by the steadily increasing supply of prescription opioids and should be addressed the way we handle air pollution. They conclude by saying that “opioids are neurotoxic, cause pain, and are toxic to the individual and society.”

None of this holds up well to close scrutiny. The Opium War was about more than a “state-sponsored monopoly with an illicit drug.” In fact, there were two Opium Wars, with the first being about trading rights, open trade and especially diplomatic status, and the second war directed at expanding trade, including opium, between Europe and China.

The notion that opioids are a “global environmental toxin” comparable to air pollution assumes exposure is passive and inevitable. But opioids are not like mercury or asbestos, emitted as a contaminant from industrial processes that could be cleaned up. Their claims about neurotoxicity are also problematic. Although small-scale imaging studies do show changes to some brain structures upon opioid exposure, the significance of this is unclear.

Their emphasis on opioid-induced hyperalgesia (OIH) – the theory that prolonged use of opioids leads to greater pain sensitivity -- is also greatly overstated. A 2021 review of published studies found only 72 patient cases of OIH, all of which were easily diagnosed and managed by opioid rotation, opioid cessation or switching to non-opioid pain medications.

Last and most important, Dubé and Chapeskie claim that “there is no evidence (zero!) to support use of opioids” for chronic non-cancer pain. They cite the 2018 SPACE trial as their major source of evidence, although that study showed opioids were no better or worse than non-opioids for pain relief. More importantly, the SPACE study didn’t find any evidence of abuse, misuse, addiction or overdose among the 108 people on opioids for a whole year, which argues against the very risks that Dubé and Chapeskie describe as inevitable.

Dubé and Chapeskie point to a single study on opioid tapering that showed good outcomes. That 2020 study found only minor improvement in cognitive function after opioid tapering. Multiple other studies show the risks and harms of tapering often outweigh its benefits, especially when tapering is rapid.

Moreover, there are clinical studies showing that opioids are effective and safe when used appropriately. A 2021 German study, for example, found that tapentadol relieves chronic low back pain, and a 2017 review found tapentadol was effective and well-tolerated by patients with moderate to severe pain for up to two years.

The video “Opioids: The Big Picture” could have been a useful introduction to opioid pharmacology, chronic non-cancer pain, and clinical practice. It could have introduced current best practices for opioid initiation and tapering. And if the focus was to be on the public health risks and harms of opioids, then it should have followed the fine work of David Courtwright's book "Dark Paradise”, Sam Quinones's "Dreamland”, or Chris MacGreal's "American Overdose".

It is unfortunate that even in the 2020s we are still struggling to get basic information about opioids right. This is arguably part of why we have a worsening opioid crisis and deteriorating pain management situation.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.  

Kratom Candy: A Sweet Alternative to Powder

By Crystal Lindell, PNN Columnist

I first started taking kratom for my chronic pain almost four years ago. I have debilitating pain in my right ribs that has been diagnosed as intercostal neuralgia. Until I found kratom, nothing sold over the counter had ever helped at all — not even the magic mix of Tylenol and Advil that doctors have been touting of late.

The only issue with kratom is that the leaves, when ground up into powder, taste like dry dirt. But when you’re in pain, and you find something that works, you tend to overlook things like horrible taste. I got used to it by the “toss and wash” method -- putting a spoonful of kratom powder under my tongue and then washing it down with a non-carbonated beverage, usually Gatorade.

But it’s not ideal, and the bad taste makes it difficult to recommend kratom to people who could benefit from it —  especially as doctors continue to limit access to prescription pain medication.

So when I recently got the chance to try some kratom candy and other new formulations, I was excited. Kratom taffy, kratom chocolate, kratom soft gels and even a kratom seltzer? Are these the kratom edibles I've been waiting for?

In short: Sort of. 

Below I offer a review of each one, ranking them on a 5-star scale and offering pros and cons for each product.

But first, a bit of context. I went into this comparing all of the items to my personal kratom go-to: loose kratom powder. The powder tends to work for my pain within about 3 minutes and it’s relatively cheap. I usually get it in bulk from my local smoke shop for about $150 a kilo, which comes out to about 70 cents for a 5 mg. dose. I usually take a dose every 3-5 hours while I’m awake, depending on how much pain I’m in.

Readers should also know that this review is not sponsored by any kratom vendors or brands, although the companies did send me these items to try for free.  We reached out to several kratom vendors and asked them to send us samples, and CBD Kratom and PurKratom obliged.

Let’s look at the various new kratom products.

Raw Kratom Taffy ★★★★★ 5/5 stars

Let’s start with what ended up being my favorite new product: Raw Kratom Taffy.

CBD Kratom sells it in multiple strains, so consumers can purchase a piece of taffy in red maeng da, white maeng da, green maeng da, and gold maeng da.

According to the ingredient list, a 20 mg. piece is one serving. However, I only ate about a 1/3 of a piece and it was enough to tackle my pain on an especially bad evening. Since each piece costs about $6, it’s good to know that it could be used as more than one dose.

Pros: It worked really well, hitting me in less than 30 minutes. And I did like the flavor, which the ingredient list said was created with fruit juices. It doesn’t taste like candy, but it doesn’t taste particularly bad and that’s a massive accomplishment for any kratom edible.

I also really liked that it came in various strains, because I have a strong preference for red maeng da, while simultaneously hating white maeng. They all work differently for people, so being able to know which one I was consuming definitely elevated the experience.

Cons: The taffy itself was incredibly difficult to bite into and I felt like I was going to break my teeth trying to chew it. I’m hopeful that the company will be able to tweak the formula a bit to work on this. It’s also a little pricey compared to the powder. I don’t think I’d want to switch to something like this for all my kratom needs, but for occasional use it was great.

PurKratom Soft Gels ★★★★☆ 4/5 stars

These would have been my favorite item if they weren't so expensive. PurKratom has them listed at $79.99 for just 20 capsules.

Nearly $80 is just a tad more than I would be willing to pay on a regular basis. Especially since the soft gel capsules can't be split like a pill into multiple doses. And it would be difficult to recommend these to someone knowing they would have to spend $80 for their first order.

The capsules did work though, and they were much easier to get down than either kratom powder or the kratom edibles I tried. The company says they are made with “high concentrations of organic kratom extracts,” with each soft gel containing 33 mg of pure extract.

I would love to see these sold by strain like the taffy is, but the formula they did use worked for me. 

Pros: These are by far the easiest item to get down. It’s like popping some Advil liquid gels. I took one at a time, and it hit me within about 30 minutes, alleviating my pain without making me fuzzy or giving me a head rush. For anyone who could benefit from kratom, but who hasn’t tried it yet because they can’t stand the delivery method, these are a wonderful option.

Cons: The price is the biggest issue with the capsules for me. Although the soft gel formulation makes them significantly better than the kratom capsules already on the market — which are usually just kratom powder stuffed into capsules — at $4 for each capsule, that’s just too much to spend on a product that I can get significantly cheaper in powder form. 

Korthal’s Collection No 539 Kratom Seltzer ★★★☆☆ 3/5 stars

This item was especially intriguing to me, as it’s the first time I’ve ever come across a kratom drink.

Korthal's Collection has it listed at $35 plus shipping for a 4-pack of 16-oz. cans, which is a little high for my budget. The company says the seltzer is made with “75mg of full spectrum mitragynine per 16oz can” and is best used for “increased focus, mood elevation and energy boosts.”

Pros: It doesn’t taste that bad. It’s not refreshing exactly, but it’s not any worse than a bitter alcoholic beverage. It tastes kind of like a strong tea and definitely needs to be consumed chilled. I’d love to see them add a lemon honey flavor to the line-up.

Overall, a full can was very potent. I only drank about a 1/3 of a can and it hit me within about 20 minutes. My fiancé drank a whole can and really felt the effects, both on his physical pain and mood.

Cons: While the flavor wasn’t bad, it wasn’t exactly good either. There was a strong aftertaste and I felt the need to eat something else to get rid of it. While the cans tout the seltzer’s ability to lift your mood and give you energy, that wasn’t my experience. If anything, it was more relaxing and subduing.

Also, the price point is a little high. It’s just expensive enough that I’m not sure I would order it on a regular basis. However, if my local smoke shop sold individual cans, I could see myself grabbing one as a treat when I went in to purchase the powder.

Korthal’s Collection: No 395 Milk and Dark Chocolate ★★★☆☆ 3/5 stars

This is probably the item I was most excited to try. Kratom? Good. Chocolate? Good. Kratom Chocolate? It was okay.  

Korthal's says “these velvety chocolate bars are best for energy and may provide pain relief and mood enhancement.” The company has them listed at $20 for a single 1.3-oz bar and they come in both milk and dark chocolate. Each bar has 8 serving squares. The packaging says they have 25 mg. of mitragynine per serving.

Pros: This is something I could easily get my older relatives to try for their arthritis. The bars don’t taste anything like a regular chocolate bar, but they also don’t taste anything like plain kratom powder. They’re chocolaty enough to easily eat a square, even if you aren’t used to the taste of kratom.

However, I did find myself using a chaser afterward to get rid of the aftertaste. And while each bar is expensive, I would feel comfortable recommending these to someone who could try it out for just $20.

As far as potency and effect, one square was definitely enough, although like the taffy, it took about 30 minutes to feel the effect. For me, it gave me a bit of a disconnected head buzz while also relieving my physical pain.

Cons: Again, the price is a little high. While it’s about in line with a lot of CBD candy on the market, it feels expensive compared to kratom powder. Adding child-proof elements to these and other kratom candies would be a good idea.

I also wish the chocolate was sold by strain, like the taffy, because I’d like to have more control over which types of kratom I’m consuming and when.

Takeaways

In the end, I find myself still reaching for my trusty kratom powder from the local smoke shop, even though I still have some of the chocolate and taffy left over. The powder just works faster and it’s also significantly cheaper per dose. The fact that taking kratom under my tongue hits me in less than 3 minutes is just such a major advantage that none of these other products could compete with. That’s not the fault of the manufacturers, it’s just the nature of the products.

For someone who doesn’t need that instant pain relief though, a lot of these edibles work in about the same amount of time as any other pain medication, and I’m sure a lot of consumers would be fine with that.

If the gel capsules came down in price, I would likely buy those for myself on a regular basis. And even at their current price, I’ll probably buy some for my relatives who I think could benefit from kratom, but who just haven’t been able to get the powder down. My fiancé, who is also a chronic pain patient, really enjoyed the seltzer.

The bottom line is that all these products could be great alternatives for anyone who just doesn’t vibe with swallowing a spoonful of soil-flavored kratom powder.

It’s exciting to see how far the kratom industry has come since I first started using it almost 4 years ago. I have long hoped companies would venture into kratom edibles and better capsule products. Finally seeing those products develop is wonderful, and I can’t wait to see what comes next!

Crystal Lindell is a journalist who lives in Illinois.  After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome.

Why Patient Advocacy for Rare Diseases Is Important

By Joanna Mechlinski, Guest Columnist

If you’ve been relatively healthy throughout your life, you tend to have a lot of faith in doctors. You believe that when a person gets sick, they simply go see a doctor and soon everything is better.

Movies and television only serve to bolster that impression, as characters frequently show up in hospitals with a baffling array of symptoms, only to have a doctor dedicated to the case quickly diagnose them.

Even if it’s a rare disease or condition which the doctor has never seen outside of a textbook, they will piece it all together successfully -- often continuing to puzzle it out after their work day has ended. The patient then receives medication or therapy from specialists. It’s understood that while recovery might take a while, it’s generally always possible.

Unfortunately, in real life, things often don’t work out this way. You might explain your symptoms to the doctor, who orders blood tests and other diagnostics. When the results come back, they’ll shrug and tell you they simply don’t know what’s the matter. As your symptoms increase, so does your desperation for relief, so you try other doctors and medical facilities, often with the same outcome.

In the U.S. we use the term “rare” to describe a disease that affects fewer than 200,000 individuals (in the EU it’s fewer than 1 in 2,000 people). But the reality is many of these diseases aren’t all that rare. They simply aren’t as common as things like breast cancer or diabetes. The National Institutes of Health’s Genetic and Rare Diseases Information Center says there are approximately 7,000 rare diseases.

In 2005, I was diagnosed with polymyositis, a rare disease that causes muscle inflammation and atrophy. I had never heard of it, nor had any of my family or friends. Go ahead and Google it -- you will quickly see just how little information exists, aside from basic definitions and the occasional patient GoFundMe. Yet per The Myositis Association, there are an estimated 50,000-75,000 people affected by a form of the polymyositis in the U.S.

Following my diagnosis, I made appointments with many specialists, some in world-renowned facilities. They seemed to know little more than I did, and I often found myself explaining various elements of the disease to them.

It would have been easy to simply give up. If much of the world didn’t even know my disease existed, then how could I hope for understanding from family and friends, much less treatment or a cure?

I learned a few lessons quickly about being a patient advocate, which I still follow today:

1. Tell your story: Yes, sometimes it’s hard to reveal personal details. But in this instance, I believe I need to use my life to educate others. What if someone else has a form of myositis, but is still undiagnosed? Both doctors and patients need to keep the condition in mind when viewing certain symptoms. I have written many freelance articles about polymyositis for various publications, and I am now writing a book.

2. Contact lawmakers: Yes, people often grumble politicians don’t do anything for them. But how can they even consider getting help for a problem they don’t know exists? Reach out to lawmakers at the local, state and federal level. Tell them about your disease and how it affects your life. Tell them what you and others with the condition need.

3. Connect with others: Thanks to the Internet, it is now easy to find people sharing an illness, regardless of how rare it is. It’s also easier to keep in touch when in-person visits may be difficult due to pain, fatigue, travel costs, etc. Making friends with people who have similar conditions can be very beneficial, particularly when sharing information about medications and treatments. It can also be a godsend to simply vent and gain support from a person who truly understands what you’re going through.

Under the guidance of the National Organization for Rare Disorders (NORD), the first Rare Disease Advisory Council (RDAC) was created in North Carolina in 2015. The goal was to strengthen the rare disease community’s voice in the state legislature.  

Patients and their families, caregivers and medical providers then banded together in other states. By the end of 2021, NORD reports that legislation creating more RDACs had been signed into law in Florida, Louisiana, Massachusetts, New Jersey, Ohio, South Carolina and Virginia. In all, Project RDAC contacted 254 legislators and introduce 11 RDAC bills.  

Being diagnosed with a rare disease while in my 20’s was not exactly among my childhood dreams for the future, but I’m far from resigned. I recall how diabetes - today usually considered a fairly manageable condition - was a death sentence until well into the 20th century, when insulin was discovered.  

Who’s to say that polymyositis and other rare diseases might not veer onto a similar path at any time? Until then, I will do my best to advocate and educate. 

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. 

How to Overcome Suicidal Thoughts and Find Hope

By Ann Marie Gaudon, PNN Columnist

Over the course of our lives, every single one of us will have painful thoughts and emotions in response to adversities and challenges. A sense of hope that we will either cope with or overcome the adversity helps to keep us going.

But when all hope is gone, this can lead to the desire to leave life itself. Hopelessness and helplessness are key factors in the decision to escape a life that is seen as unbearable.

Globally, we lose over 700,000 people to suicide every year. That tells us millions of people are suffering, both mentally and physically, struggling and searching for relief which too often does not come.

Suicide causes heartache and grief for those left behind, affecting families and entire communities. If that weren’t enough, knowing someone who died by suicide is linked to an increased risk for suicide and other mental health challenges.

Suicidologists have developed various theories in an attempt to identify common factors across suicidal experiences. Here are three:

Interpersonal Theory of Suicide

The person no longer feels they belong in a healthy sense, but rather feels like a burden to others. They see their situation as never changing, and therefore hopeless.

Three-Step Theory of Suicide

Step 1: The combination of pain and hopelessness causes suicidal desire.

Step 2: Suicidal desire intensifies when pain exceeds or overwhelms connectedness.

Step 3: Strong suicidal desire progresses to suicide attempts if a capability for suicide is present.

Although this theory differs in certain ways, it similarly advises that psychological or physical pain must be accompanied by hopelessness to cause suicidal desire.

The Integrated Motivational-Volitional Model

This model’s hypothesis is that “entrapment” or feeling there is no escape from the adversity drives the suicidal behaviour. Entrapment refers to a specific sense of being stuck, whereas hopelessness refers to a sense of pessimism. Hope appears to “weaken the relationship between entrapment and suicidal desire.”

The aim of these researchers is to identify the factors which shift suicidal thoughts into suicidal behaviour, in order to reduce or eradicate these factors and save lives. They all posit that hope is necessary even in the face of intolerable pain, whether physical or emotional.

One thing I have learned as a therapist is that people have a choice only if they believe they have a choice. Hope must ring true to a person’s reality.

Seek Social Support

Research shows us that social isolation is associated with increased risk of suicide, while social support is related to a decreased risk. Who in your life’s circle has the headspace to support you, listen to you, and help you when needed? Your spouse, family, friends, neighbours, colleagues, and clergy – can you count on their support?

Sometimes, a person’s only support is their therapist.  Support is a protective factor and necessary as an antidote to social isolation.

Attend to Your Emotions

Trying to avoid or distract yourself from your emotions will only have them rebound back to you and be even more invasive. As emotional pain is one driver of suicidal thoughts, get some help to process what you are feeling.

Can you notice and name what you are feeling? Can you accept what you are feeling without being overwhelmed by it? Do you recognize the message within the emotion? Are you aware of, and capable of self-compassion directed toward your pain?

Quite often I see the need for self-compassion and the need for support from others simultaneously. Once you can let your emotions be just as they are, are you able to shift yourself into soothing your psychological pain? Are you capable of moving into a more valued direction? 

If you have answered “no” to any or all of these questions, a trained therapist can help you.

Broaden Your Perspective

The hopelessness theory of depression tells us that most people who feel hopeless believe their struggles are unique to them (internal) or about them (global struggles), and that these struggles are unchangeable.

Therapeutic work can help to unravel why a person might believe that they themselves are hopeless. Talk and other techniques can reveal where these beliefs began and why. When the origins of erroneous, negative beliefs are understood, they can be replaced with beliefs that are based in reality and not a product of emotional reasoning (e.g. “I feel like I have no worth, therefore it must be true”).

Global struggles can often be tamed with the support of a group. Support groups offer a multitude of protective factors such as encouragement, friendship and guidance. You can be with people who can truly empathize with you and comfort you as an antidote to your own disappointment, frustration and confusion. Peer support can be powerfully protective and also help to dissipate any stigma you may be feeling toward yourself or situation.

Gain a Purpose

The antidote to feeling powerless is to feel empowered. Again, peer support from a support group can contribute to a sense of empowerment and purpose. Reduced isolation, empathy from others, and an increase of information and awareness are all threads in the fabric of assertion, better life choices, and a sense of hope that the situation can be changed. If it can’t, then your perspective about the situation can be improved.

Support groups are effective because they bring together people who all share something in common. This creates a support system. With most gatherings now online, you can find a support group for virtually any issue.

For example, I am a person in pain, so I can find these similarities, support and empowerment from an organization in my country: The Chronic Pain Association of Canada. I also belong to a smaller support group with a very specific ailment in common. One of my diagnoses is interstitial cystitis/painful bladder syndrome, so I also belong to The Happy Pelvis for the same benefits.

The Takeaway Message

No one can make it alone. Life is a collaboration and we often need help and support. There is no shame in this, it is the human condition. Suffering is what unites us -- it does not separate us from the crowd.

Whatever your challenge, you are not alone. Get the help you deserve and surround yourself with supportive allies. When you are feeling more empowered and stronger in general, you can be a part of change. That change may be within yourself or it may be a part of the outside world. Where there is help, there is hope.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website. 

If you are in crisis and live in Canada, help is available by calling the Canada Suicide Prevention Service at 833-456-4566. If you live in the US, help is available by calling the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). You can also call 911 for immediate help..

Gabapentinoids and Anti-Depressants Recommended for Diabetic Neuropathy

By Pat Anson, PNN Editor

People with painful diabetic neuropathy (PDN) should be treated with gabapentinoids, anti-depressants and sodium channel blockers, according to updated guidelines from the American Academy of Neurology (AAN). The guidelines also recommend some alternative treatments, such as ginkgo biloba, capsaicin patches and cognitive behavioral therapy, but strongly discourage the use of opioids.

The AAN’s new guidelines, published online in the journal Neurology, acknowledge that many of the recommended therapies for PDN don’t directly treat physical pain, but they improve mood and sleep, and that helps reduce “pain perception.”

“In treating patients with PDN, it is important to assess other factors that may also affect pain perception and quality of life. Patients with diabetes are more likely to have mood disorders (most commonly, major depression) and sleep disorders (especially obstructive sleep apnea) than the general population,” an AAN panel of experts found. “Therefore, treating concurrent mood and sleep disorders may help reduce pain and improve quality of life, apart from any direct treatment of the painful neuropathy.”

Nearly 26 million Americans have diabetes and about half have some form of neuropathy, according to the American Diabetes Association. PDN causes nerves to send out abnormal signals, causing patients to feel stinging or burning pain, as well as loss of feeling in their toes, feet, legs, hands and arms. More severe cases can result in ulcers or amputation of the affected limbs.

The last update to the AAN guideline was in 2011, when opioids such as morphine and oxycodone were said to be “probably effective and should be considered.” Much has changed over the last decade, and the AAN no longer supports their use for PDN.

"Current evidence suggests that the risks of the use of opioids for painful diabetic neuropathy therapy outweigh the benefits, so they should not be prescribed," said lead author Brian Callaghan, MD, an associate professor of neurology at University of Michigan Health.

‘Probably’ Better Than Placebo

The only oral medications the AAN now recommends for PDN are gabapentinoids (pregabalin and gabapentin); serotonin-norepinephrine reuptake inhibitors (SNRIs) such as duloxetine; tricyclic anti-depressants such as amitriptyline; and sodium channel blockers such as valproic acid, which are usually used to treat seizures. An SNRI can also be combined with a weak opioid like tramadol for PDN.

There are caveats to all of these drugs since the evidence for them is limited and they were originally developed for other conditions such as depression or epilepsy. For example, the guidelines state gabapentin is “probably more likely than placebo to improve pain” and pregabalin is “possibly more likely” to help with PDN.

Topical medications such as capsaicin and buprenorphine patches also get the lukewarm endorsement of “possibly” being better than a placebo.

When one class of medication doesn’t work for PDN, experts say patients should try another.

“Managing expectations is also important,” Callaghan said. “Our second recommendation urges the provider to be frank with patients that the goal is to reduce their pain. It may not be possible to completely resolve the symptoms.”

A 2017 study by the Agency for Healthcare Research and Quality found that duloxetine (Cymbalta) and some other anti-depressants are moderately effective at relieving PDN, but found little or no evidence that opioids and gabapentinoids are helpful in treating neuropathic pain.

Researchers say a significant limitation for all pain relievers – not just opioids – is that few studies examine their safety and efficacy longer than three months. PDN is a progressive disorder that is likely to last a lifetime.  

“Given the chronicity of pain in those with diabetic neuropathy and the potential for evolving side effects, long-term studies are needed to better inform the long-term pain management in this population. Specifically, future studies should focus on the long-term effects (positive and negative) of opioids in this population to determine whether there is any role for these medications in this population,” the AAN’s expert panel concluded.

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.