More Canadians Using Cannabis for Pain Relief

By Pat Anson, PNN Editor

Chronic pain sufferers in the United States and Canada are increasingly turning to cannabis for pain relief. The latest evidence of that is a large survey of people in pain in Quebec, Canada.

Of the 1,344 participants who answered questions about their cannabis use, nearly a third (30.1%) said they used cannabis for pain management, far more than those who used it for other health conditions (9.1%) or for recreational purposes (12.7%).

The online survey was conducted in 2019, a few months after recreational cannabis was legalized in Canada in October, 2018.  Prior to full legalization, cannabis use by Canadians living with chronic pain was estimated at 10% or less.

“Based on studies conducted before the legalization of recreational cannabis, the prevalence of cannabis use estimated in the present study indicates a threefold increase in reported usage,” researchers reported. “Because people living with CP (chronic pain) have reported using even more cannabis during the first wave of the COVID-19 pandemic, it seems reasonable to expect the prevalence to be even higher today. Our results suggest that cannabis is a common treatment reported by people living with CP and underscore the importance of rapidly generating more evidence on the safety and efficacy of cannabis.”

The survey findings, recently published in the Canadian Journal of Pain, show that pain sufferers under the age of 26 were most likely to use cannabis (36.5%), while those aged 74 and older were least likely (8.8%). Three out of four respondents reported living with pain for at least 5 years. Over two-thirds (67.7%) said they had moderate to severe pain.

A 2021 Harris Poll found that twice as many Americans are using cannabis or CBD to manage their pain than opioid medication. Over-the-counter pain relievers were used by over half (53%) of those surveyed, followed by cannabis products (16%), non-opioid pain relievers (11%) and opioids (8%). Two-thirds of Americans with chronic pain (66%) said they had changed their pain management since the pandemic began, and were using more OTC pain relievers and cannabis products.

Neither the Harris or Canadian surveys specifically asked respondents if they were using cannabis for pain relief because opioids were harder to obtain. Opioid prescribing in the U.S. and Canada has declined significantly in the past decade due to more restrictive medical guidelines and fears about abuse.

Early Use of Methotrexate Slows Rheumatoid Arthritis

By Pat Anson, PNN Editor

Early treatment with methotrexate can significantly reduce joint pain and inflammation in patients showing early signs of rheumatoid arthritis (RA), according to a new study by Dutch researchers.

First used as a chemotherapy treatment because it prevents cancer cells from dividing, methotrexate became a first-line therapy for RA in the 1980’s because it also acts as an immune system inhibitor. RA is a chronic autoimmune disease in which the body’s own defenses attack joint tissues, causing pain, swelling, inflammation and bone erosion. 

Treatment with methotrexate usually isn’t initiated until RA is diagnosed, but researchers at Leiden University Medical Centre (LUMC) in the Netherlands found that early treatment of patients in the "pre-rheumatic phase" helped slow progression of the disease.

"At present, methotrexate is only prescribed to the patient following a rheumatoid arthritis diagnosis," said lead author Annette van der Helm, PhD, Professor of Rheumatology at LUMC. "But that is too late. By then, the disease is already considered chronic."

Van der Helm and her colleagues enrolled 236 patients who had joint pain and inflammation that could be seen on an MRI. Although RA was suspected, it was not yet confirmed. Half the patients were treated with methotrexate and the other half with a placebo. The effects of the treatments were assessed a year later.

The study findings, published in The Lancet, show that early treatment with methotrexate did not prevent the development of RA, but the diagnosis was delayed. Patients in the methotrexate group also had less pain and morning stiffness than those treated with a placebo. Their physical function was also better and their MRI scans showed less joint inflammation.

"This is an important step towards reducing disease burden for this group of patients," says Van der Helm. "This chronic disease is extremely burdensome to patients and their families. Our study is paving the way toward arthritis prevention."

In 2019, over a million people were prescribed methotrexate in the United States, where it is approved as a treatment for RA, psoriasis and cancer. The drug is also used “off-label” for lupus, migraine, multiple sclerosis, Crohn’s Disease and other autoimmune problems.   

‘Abortion-Inducing Drug’

Ironically, the Dutch study comes at a time when some female patients in the U.S. are losing access to methotrexate because the drug can cause miscarriages and be used to end ectopic pregnancies. After last month’s Supreme Court ruling that overturned Roe vs. Wade, over half the states enacted or implemented abortion limits, including some that specifically list methotrexate as an “abortion-inducing drug.”  

Although the state laws don’t prohibit methotrexate from being used for other purposes, some doctors, pharmacies and insurers have become cautious about prescribing or dispensing the drug. The Arthritis Foundation has heard from several women who’ve had trouble getting methotrexate, including some beyond childbearing age.

“Some of the stories we’ve gotten in are of women who are over the age of 50 — they are past their reproductive years — and they’re still being asked really invasive questions and having roadblocks thrown up,” Dr. Anna Hyde of the Arthritis Foundation told NBC4 in Washington.

Up to 90% of RA patients are prescribed methotrexate at some point. It doesn’t work for everyone and can have side effects, but it’s the only affordable option for many patients, costing about $50 for a month’s supply of generic methotrexate tablets. Other treatments for RA, such as disease modifying biologic drugs, can cost as much as $3,000 a month and are not covered by insurance.  

Popular Exercises for Persons with Arachnoiditis

By Dr. Forest Tennant, PNN Columnist 

Adhesive Arachnoiditis (AA) is an inflammatory, nerve root entrapment disease in which cauda equina nerve roots are glued by adhesions to the arachnoid-dural covering of the spinal canal. An inflamed tumor-like mass is formed inside the spinal canal that blocks spinal fluid flow, allows seepage of fluid into tissue outside the spinal canal, and shuts off electrical impulses that activate the legs, feet, bladder, intestine and sex organs.  

Some specific exercises help neutralize the deleterious effects of AA and promote regeneration of damaged tissue.  We surveyed 40 persons with MRI-documented AA to determine which exercises they found most beneficial.

The top five are listed here in descending order of popularity. 

1. Water Soaking: It is no surprise this is No.1. Water soaking pulls out toxins and excess electricity and relaxes muscles. All types of water soaking are good: pool, jacuzzi, shower, tub, hot/wet towel. Epsom Salts in water mimic the mineral baths used therapeutically by ancient peoples. 

2. Massage: Kneading of back muscles causes any seepage of spinal fluid to mobilize and causes spinal fluid to keep moving around the AA blockage in the spinal canal. 

3. Walking: Nerve roots that activate the legs and feet can become so inflamed and entrapped that one can’t walk. Short daily walks are essential to prevent the development of paralysis and weakness. 

4. Arm & Leg Stretching: Entrapped nerve roots in the AA mass decrease the normal leg, arm, and foot fidgets and movements that occur every few minutes even while sleeping. Arm and leg stretching will keep the lower back muscles from contracting or shrinking which, over time, will increase back pain. 

5. Deep Breathing: Deep breathing and short breath-holds bring oxygen to the spinal canal to promote healing. It will also help keep spinal fluid moving. Deep breathing is best done while standing but it can be done while sitting and watching TV, driving, or eating. 

Other exercises compliment the AA medical treatment protocol. Besides those listed here, we also advocate light weightlifting, rocking, bicycling, and trampoline walking. 

Credit: Lynn Ashcraft did the data analysis of this survey. 

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 click here.

Dr. Tennant’s new book, "Clinical Diagnosis and Treatment of Adhesive Arachnoiditis” is available on Amazon. 

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

How Emojis Could Enhance Pain Care

By Pat Anson, PNN Editor

Because pain is subjective and varies from patient to patient, there has long been a debate in the medical community about the best way to measure it.

The two most widely used methods, the numeric 0 to 10 pain scale and the Wong-Baker scale, both rely on patients to self-report their pain levels by assigning a number or a face to it. Someone in severe pain, for example, might rate it an “8” or point to an unhappy, grimacing face to help their doctor understand how much pain they are in.

Not exactly cutting-edge science, is it?

In an effort to find a more useful way to measure pain in the digital age, researchers at Massachusetts General Hospital (MGH) asked 109 patients to rate their pain on a numerical scale and by using an electronic device to select one of six emoji faces modeled after the Wong-Baker scale. The patients suffered from abdominal, chest, back or extremity pain, and were admitted for emergency care or surgery at MGH.

JAMA IMAGE

The study findings, published in JAMA, showed no discernible difference between the numerical and emoji scales – suggesting that digital emojis can be useful in collecting patient health data, particularly for young children and individuals with different cultural, language and cognitive abilities.

"By demonstrating concordance between emoji and the numerical pain rating scale, we've validated the use of emoji as an accurate, open-source and economical alternative to popular visual analog pain scales such as Wong-Baker," first author Shuhan He, MD, an MGH emergency department attending physician, said in a press release.

"Because emoji are open source and digital, they could encourage collection of data on a patient's condition over days, weeks, or months—information that could then be integrated into electronic health records and documented on patients' charts."

Rather than just an online fad, Dr. He and his colleagues say colorful emoji symbols could be a practical and imaginative way to break down communication barriers in the hospital setting.

"If a clinician doesn't understand the patient due to a language barrier or disability, it's tantamount to no treatment at all," said senior author Jarone Lee, MD, vice chief of Critical Care and Trauma Emergency Surgery at MGH. "Among populations that could benefit are patients in the intensive care unit who may have difficultly speaking, such as those on mechanical ventilators who need an alternative way to characterize their pain to caregivers."

Digital emojis originated in Japan over a decade ago. Of the 3,500 emoji symbols approved for use by the Unicode Consortium -- a nonprofit that maintains uniform text standards for computers — only 50 are relevant to medicine.

The first medical emojis, introduced in 2015, were the syringe and the pill. Emojis have since been added to represent disability, a stethoscope, bone, teeth, heart and lungs. Dr. He is working with professional medical societies to develop more emojis – including ones to represent pain -- with the goal of getting them approved by the Unicode Consortium.

He believes medical emojis could become mainstream tools for enhancing diagnosis and treatment. In emergency room cases where timing is critical, emojis could lead to a point-and-tap form of communication that bridges language gaps and speeds clinical decisions.

"As physicians, our job is to know how patients feel," Dr. He said, "and the use of emoji allows us to make that process more equitable and thus improve healthcare delivery for all patients in a very meaningful way."

Cross-Country Bike Ride Raising Awareness About Peripheral Neuropathy

By Madora Pennington, PNN Columnist

Gregory Maassen, a 55-year-old with debilitating peripheral neuropathy, sits in a tent in Ely, Nevada charging his e-bike, drone and cameras. He has been e-biking from Washington DC to San Francisco to raise funds for The Foundation for Peripheral Neuropathy, collecting video for a documentary along the way.

When Maassen was at his most ill, a 3,400-mile solo bike trek would have been only a fantasy. But he dreamed of such things when he was bedbound. Hope, he believes, is a key to improving.

Maassen had been a successful international businessman, until his life changed in 2018 when he found himself covered with tics while working in South Africa. He became sick with flu-like symptoms and later a burning sensation all over his body.

Finding no cause or cure, doctors told Maassen his physical symptoms were from stress and to get psychiatric help. Arguing with them was useless. 

“If you are diagnosed as psychosomatic, you don’t get the right care and treatment,” said Maassen, who was unable to work, slept 18 hours per day and sank into a deep depression.

Eventually, doctors at Johns Hopkins Hospital in Maryland took tissue samples from the skin on his legs. They could see the nerve damage that was causing the consuming, burning pain. Once diagnosed correctly with post-infectious small fiber neuropathy, Maassen was started on medications that helped.

Damaged Nerves

According to the National Institutes of Health, there are more than 100 kinds of peripheral neuropathy, a type of nerve damage. Peripheral neuropathy affects 20 million Americans, but some believe that estimate is low because many patients are misdiagnosed or not tested for neuropathy at all.

Nerves are the network cables of the body, allowing the body to communicate with itself. Some nerves control physical movements, others sense input such as light, touch, temperature and pain, and some regulate automatic processes like breathing and digestion. Damaged nerves transfer incorrect signals or may interrupt them altogether.

Physical injury, infection, auto-immune disease, cancer, and diabetes are some common causes of peripheral neuropathy. Treatment varies depending on where the damage is and the symptoms. Exercise is often recommended because the increased blood flow nourishes nerves and strengthens muscles. 

When Maassen’s doctors recommended exercise, he tried returning to his passion for hiking, but it proved too strenuous. Not being able to hike added to his depression.

Cycling at the time seemed impossible because the area around him was too hilly. He tried swimming, but the chlorine aggravated his symptoms. He was so weak he could not finish even beginner lessons of Pilates he found on YouTube.

Because he is Dutch by birth, cycling is part of Maassen’s culture. It was never a passion of his, just what many people in his native country do. Maassen turned to an electric bike, or e-bike.

Rather than relying solely on the rider’s strength, an e-bike has a small motor that boosts the rider’s pedaling power. Hills and distances can be manageable, even for a debilitated person.

At that time, there was little Maassen could physically do for himself. His wife provided what he describes as “a marathon of support.” But it was also a lonely time for him, as it is for many with chronic illness.

“When you are endlessly sick, you lose your support,” Maassen says. “People don’t want to listen to you. Only your closest friends will continue to reach out.”

Maassen’s e-biking gave him small adventures that restored his fitness, and eased his depression and loneliness. Running an errand or visiting a friend made his brain active and happy by registering something positive. Later, he began kayaking. Very slowly, he rebuilt his strength. Within a few months, Maassen was able to go on long rides. He resumed working the next year and started an e-bike club.

To raise awareness for peripheral neuropathy and encourage the sport of e-biking for all, Maassen embarked on his e-bike journey along the Lincoln Highway on April 2nd of this year. So far, he has raised over $120,000. He has another dream: to establish this route as a new transcontinental cycling route for e-bikers. Unlike cyclists, e-bikers need electricity to re-charge their bikes.

Maassen is an FAA-certified drone pilot. He is using his drone to film, sometimes as he rides. He does interviews on stops and rest days and gets more footage for future documentaries about e-biking and this route.

Maassen still has bad days where he suffers burning pains “like crazy,” but he forces himself to do things and not focus on the pain. While on this journey he makes a conscious effort to fully engage in the moment, relishing the beautiful scenery and the warm people he meets. He stays in campgrounds or cheap hotels to keep the costs of the trip low. His favorite meal is a spicy Italian Subway sandwich.

Maassen recently became a U.S. citizen, but he travels with a souvenir from his home country – Dutch wooden shoes, which helps to start conversations. He still feels sorrow at the horrible period before he was correctly diagnosed. He hopes his ride will contribute to education and awareness.

“Maybe people will recognize the tingling, burning, the sinking into depression. I hope they will go to the Foundation’s website or maybe see a neurologist,” he told me. “With proper support from the medical profession, understanding your limitations, and making lifestyle changes you can make a difference in your life.”

To donate to the Foundation for Peripheral Neuropathy, click here. For updates on Maassen’s ride, click here. To donate to the E-bike Across the U.S. campaign, click here.

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

Covid’s New Wave: Get Another Booster Shot or Wait?

By Sam Whitehead and Arthur Allen, Kaiser Health News

Gwyneth Paige didn’t want to get vaccinated against covid-19 at first. With her health issues — hypertension, fibromyalgia, asthma — she wanted to see how other people fared after the shots. Then her mother got colon cancer.

“At that point, I didn’t care if the vaccine killed me,” she said. “To be with my mother throughout her journey, I had to have the vaccination.”

Paige, who is 56 and lives in Detroit, has received three doses. That leaves her one booster short of federal health recommendations.

Like Paige, who said she doesn’t currently plan to get another booster, some Americans seem comfortable with the protection of three shots. But others may wonder what to do: Boost again now with one of the original vaccines, or wait months for promised new formulations tailored to the latest, highly contagious omicron subvariants, BA.4 and BA.5?

The rapidly mutating virus has created a conundrum for the public and a communications challenge for health officials.

“What we’re seeing now is a little bit of an information void that is not helping people make the right decision,” said Dr. Carlos del Rio, a professor of infectious diseases at the Emory University School of Medicine.

Del Rio said the public isn’t hearing enough about the vaccines’ value in preventing severe disease, even if they don’t stop all infections. Each new covid variant also forces health officials to tweak their messaging, del Rio said, which can add to public mistrust.

About 70% of Americans age 50 and older who got a first booster shot — and nearly as many of those 65 and older — haven’t received their second covid booster dose, according to data from the Centers for Disease Control and Prevention. The agency currently recommends two booster shots after a primary vaccine series for adults 50 and older and for younger people with compromised immune systems. Last week, multiple news outlets reported that the Biden administration was working on a plan to allow all adults to get second covid boosters.

Officials are worried about the surge of BA.4 and BA.5, which spread easily and can escape immune protection from vaccination or prior infection. A recent study published in Nature found BA.5 was four times as resistant to the currently available mRNA vaccines as earlier omicron subvariants.

Mixed Messages

Consistent messaging has been complicated by the different views of leading vaccine scientists. Although physicians like del Rio and Dr. Peter Hotez of Baylor College of Medicine see the value in getting a second booster, Dr. Paul Offit, a member of the FDA’s vaccine advisory committee, is skeptical it’s needed by anyone but seniors and people who are immunocompromised.

“When experts have different views based on the same science, why are we surprised that getting the message right is confusing?” said Dr. Bruce Gellin, chief of global public health strategy at the Rockefeller Foundation and Offit’s colleague on the FDA panel.

Janet Perrin, 70, of Houston hasn’t gotten her second booster for scheduling and convenience reasons and said she’ll look for information about a variant-targeted dose from sources she trusts on social media. “I haven’t found a consistent guiding voice from the CDC,” she said, and the agency’s statements sound like “a political word salad.”

On July 12, the Biden administration released its plan to manage the BA.5 subvariant, which it warned would have the greatest impact in the parts of the country with lower vaccine coverage. The strategy includes making it easier for people to access testing, vaccines and boosters, and covid antiviral treatments.

During the first White House covid briefing in nearly three weeks, the message from top federal health officials was clear: Don’t wait for an omicron-tailored shot. “There are many people who are at high risk right now, and waiting until October, November for their boost — when in fact their risk is in the moment — is not a good plan,” said Dr. Rochelle Walensky, head of the CDC.

With worries about the BA.5 subvariant growing, the FDA on June 30 recommended that drugmakers Pfizer-BioNTech and Moderna get to work producing a new, bivalent vaccine that combines the current version with a formulation that targets the new strains.

The companies both say they can make available for the U.S. millions of doses of the reformulated shots in October. Experts think that deadline could slip by a few months given the unexpected hitches that plague vaccine manufacturing.

“I think that we have all been asking that same question,” said Dr. Kathryn Edwards, scientific director of the Vanderbilt Vaccine Research Program. “What’s the benefit of getting another booster now when what will be coming out in the fall is a bivalent vaccine and you will be getting BA.4/5, which is currently circulating?”

“There are many people who are at high risk right now, and waiting until October, November for their boost — when in fact their risk is in the moment — is not a good plan. ”

— Dr. Rochelle Walensky, CDC.Director

The FDA on July 13 authorized a fourth covid vaccine, made by Novavax, but only for people who haven’t been vaccinated yet. Many scientists thought the Novavax shot could be an effective booster for people previously vaccinated with mRNA shots from Pfizer-BioNTech and Moderna because its unique design could broaden the immune response to coronaviruses. Unfortunately, few studies have assessed mix-and-match vaccination approaches, said Gellin, of the Rockefeller Foundation.

Edwards and her husband got covid in January. She received a second booster last month, but only because she thought it might be required for a Canadian business trip. Otherwise, she said, she felt a fourth shot was kind of a waste, though not particularly risky. She told her husband — a healthy septuagenarian — to wait for the BA.4/5 version.

People at very high risk for covid complications might want to go ahead and get a fourth dose, Edwards said, with the hope that it will temporarily prevent severe disease “while you wait for BA.4/5.”

The omicron vaccines will contain components that target the original strain of the virus because the first vaccine formulations are known to prevent serious illness and death even in people infected with omicron.

Those components will also help keep the earlier strains of the virus in check, said Dr. David Brett-Major, an infectious disease specialist at the University of Nebraska Medical Center. That’s important, he said, because too much tailoring of vaccines to fight emerging variants could allow older strains of the coronavirus to resurface.

Brett-Major said messages about the value of the tailored shots will need to come from trusted, local sources — not just top federal health officials.

“Access happens locally,” he said. “If your local systems are not messaging and promoting and enabling access, it’s really problematic.”

Although some Americans are pondering when, or whether, to get their second boosters, many people tuned out the pandemic long ago, putting them at risk during the current wave, experts said.

Dr. Georges Benjamin, executive director of the American Public Health Association, said he doesn’t expect to see the public’s level of interest in the vaccine change much even as new boosters are released and eligibility expands. Parts of the country with high vaccine coverage will remain relatively insulated from new variants that emerge, he said, while regions with low vaccine acceptance could be set for a “rude awakening.”

Even scientists are at a bit of a loss for how to effectively adapt to an ever-changing virus.

“Nothing is simple with covid, is it? It’s just whack-a-mole,” said Edwards. “This morning I read about a new variant in India. Maybe it’ll be a nothingburger, but — who knows? — maybe something big, and then we’ll wonder, ‘Why did we change the vaccine strain to BA.4/5?’”

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

California Medical Board Urged to End Bias Against Rx Opioids

By Pat Anson, PNN Editor

The Medical Board of California got an earful from doctors, patients and their advocates during a public hearing Thursday on proposed changes to the board’s guideline for prescribing opioids and other controlled substances. Most speakers praised changes to the guideline that give physicians more flexibility in prescribing higher doses of opioids, but said they don’t go far enough.

“It continues to reflect pervasive bias that we find just about everywhere against the use of opioid pain medication,” said Kristen Ogden of Families for Intractable Pain Relief, a patient advocacy group. “There seems to be an underlying assumption that opioids are bad. Risks vs. benefit is often mentioned, but potential benefits receive very little attention in the draft. It’s kind of like a form of subliminal messaging.”

The board’s draft proposal continues to maintain that opioids “should not be the first line of treatment” for patients with chronic non-cancer pain and recommends that physicians “use extra precautions” when increasing doses above 50 morphine milligram equivalents (MME). Urine drug tests and pill counts are also strongly recommended for patients on long-term opioid therapy. Forced or rapid tapering of patients is discouraged, and doctors are urged to give patients at least 30 days’ notice before discharging them.   

“Opioid prescribing has been a major hot button issue for several years,” said board member Richard Thorp, MD, former president of the California Medical Association. “Our concern primarily is patient safety, and part of that patient safety is being able to prescribe to those patients that critically need these medications (in) a safe and viable environment.”

Thorp headed a task force that reviewed the medical board’s policies, which like many others around the country are modeled after the CDC’s 2016 opioid guideline.

“Unfortunately, many agencies, health plans and other kinds of oversight agencies took the guidelines as very strict guidelines,” said Thorp. “As result, many people who were on larger doses of opioid medications for chronic conditions that were intractable were significantly disadvantaged. Maybe that’s an extreme understatement. Many of them were really harmed by rapid tapering off of medications. Many primary care physicians, in particular, on which this burden had fallen basically backed out of the arena in prescribing chronic narcotics.”

The CDC has acknowledged the harm its opioid guideline has caused, but has been slow in revising it. An updated guideline is not expected to be finalized until late this year, nearly seven years after the original guideline was released.

‘It Has Killed People’

The medical board heard from several patients and physicians who are critical of its past efforts to rein in opioid prescribing, such as the board’s controversial “Death Certificate Project,” which resulted in hundreds of letters threatening disciplinary action being sent to doctors who prescribed opioids to patients who later overdosed. A study found that overdose deaths doubled in California after the project was launched, with many of the deaths linked to street drugs, not prescription opioids.

“It has killed people. My son is one of those people,” said Rosie Arthur, who said her son was abruptly taken off opioids after 24 years and put on antidepressants, which led to his death. “I don’t want to see anybody else die needlessly.”

Doctors told the board its enforcement efforts have had a chilling effect on pain management across the state.

“Some of our physicians are under investigation for compliance with these guidelines, which are resulting in serious unintended consequences,” said Lee Snook, Jr., MD, a pain management specialist in Sacramento. “Our physicians specializing in pain management have stopped taking new referrals, leaving patients and their primary physicians without local accessible options for complex pain management. One of these physicians announced his retirement last week.”   

“We have found it impossible to find pain consultants. There is nobody to refer our pain patients to, particularly patients who are on public programs. There is nobody in our community who will manage chronic medical pain,” said Aaron Roland, MD, a family physician in Burlingame. “Unfortunately, one of our clinicians recently had to leave us, leave our practice, because she had to devote herself full time to defending herself in a case brought by the Medical Board of California for opiate prescribing.”

“In the minds of our primary care docs, they really don’t want to have anything to do with any level of pain management for fear they will lose their license and lose their job,” said Michael Conroy, MD, chief medical officer for a large primary care practice in Sacramento. Conroy pointed out the board’s draft guideline uses the word “should” 44 times and the word “must” seven times.

“Very few of these statements are backed by much in the way of hard science,” he said. “The use of this language can be viewed as signaling an intent to use these statements to discipline doctors who aren’t perfect. Nobody is ever going to be perfect in documenting or attending to 51 separate things on a simple visit with a chronic pain patient.”

Conroy urged the board to modify its draft guideline to indicate that most of its recommendations are based on opinion and should not be used for disciplinary purposes or viewed as hard requirements.

Women Losing Access to Arthritis Drugs Due to Abortion Bans

By Pat Anson, PNN Editor

It didn’t take long for last month’s Supreme Court decision overturning Roe v. Wade to have a ripple effect on the U.S. healthcare system – including unintended consequences for women of childbearing age who have painful conditions such as lupus, rheumatoid arthritis, migraine and multiple sclerosis (MS).

Methotrexate and other drugs used to treat autoimmune and neurological conditions can also be used to induce abortions because they prevent cells from dividing. Although not commonly used for that purpose, methotrexate is officially listed in Texas as an “abortion-inducing drug” – an abortifacient -- putting practitioners at risk of running afoul of the state’s $10,000 bounty on anyone who helps a woman end a pregnancy after six weeks.

Even in states where abortion is legal, physicians, pharmacists and other healthcare providers have become cautious about prescribing or dispensing methotrexate.

“I received an email from my rheumatologist today that they are stopping all refills of methotrexate because it is considered an abortifacient,” a Virginia woman with lupus posted on Twitter just days after Roe was overturned. “If this is happening in a blue state with no trigger law, think of those in red states where abortion isn’t even legal. And those states that have trigger laws causing extreme and immediate loss of access.”

On the same day Roe was overturned, another poster on Twitter said his wife’s rheumatologist took all his female patients off medications that might cause a miscarriage

“So those patients are going to have to go off the drugs that were helping to control their condition and have worse health outcomes. People are going to die because of this,” he said.

The Lupus Foundation of America and Arthritis Foundation said they were aware of the situation and encouraged affected patients to contact them directly.

In an op/ed published in JAMA Neurology, neurologists at UC San Francisco School of Medicine warn the new abortion limits could have life-changing and life-threatening consequences for women with migraine, MS and epilepsy.

"Even if prescribed for a neurological condition, there are reports from patients across the country stating they are now unable to access methotrexate because it can also be used to induce abortion," wrote lead author Sara LaHue, MD, of the UCSF Department of Neurology. "This could increase risk of morbidity, mortality and irreversible disability accumulation for women with neurologic diseases."

Ironically, some treatments for neurological conditions also increase the likelihood of an unplanned pregnancy because they reduce the effectiveness of hormonal contraceptives. Physicians may become reluctant to prescribe those drugs to women of childbearing age.

Some neurologists may also rule out the use of monoclonal antibodies for women — not because they are used in abortions, but because they may harm a fetus.

"In many settings, women with MS are treated with less effective therapies, because these medications are perceived to be safer in pregnancy," said co-author Riley Bove, MD, of the UCSF Department of Neurology. "Often, neurologists are not familiar with how to time or optimize certain medications, or of their updated safety profile. The reversal of Roe v. Wade may reinforce decisions to stick with the less effective therapies, which may result in irreversible disability for some women with MS."

This week the Health and Human Services Department (HHS) warned retail pharmacies they are at risk of violating federal civil rights law if they deny women access to medications used in abortions. The warning specifically mentions methotrexate when its prescribed to someone with rheumatoid arthritis or some other disabling condition.

“If the pharmacy refuses to fill the individual’s prescription or does not stock methotrexate because of its alternate uses, it may be discriminating on the basis of disability,” HHS said..

Patients With Epilepsy Navigate Murky CBD Market

By Eric Berger, Kaiser Health News

In 2013, Tonya Taylor was suicidal because her epileptic seizures persisted despite taking a long list of medications.

Then a fellow patient at a Denver neurologist’s office mentioned something that gave Taylor hope: a CBD oil called Charlotte’s Web. The person told her the oil helped people with uncontrolled epilepsy. However, the doctor would discuss it only “off the record” because CBD was illegal under federal law, and he worried about his hospital losing funding, Taylor said.

The federal government has since legalized CBD, and it has become a multibillion-dollar industry. The FDA also has approved one cannabis-derived prescription drug, Epidiolex, for three rare seizure disorders.

But not much has changed for people with other forms of epilepsy like Taylor who want advice from their doctors about CBD. Dr. Joseph Sirven, a Florida neurologist who specializes in epilepsy, said all of his patients now ask about it. Despite the buzz around it, he and other physicians say they are reluctant to advise patients on over-the-counter CBD because they don’t know what’s in the bottles.

The FDA does little to regulate CBD, so trade groups admit that the marketplace includes potentially harmful products and that quality varies widely. They say pending bipartisan federal legislation would protect those who use CBD. But some consumer advocacy groups say the bills would have the opposite effect.

Caught in the middle are Taylor and other patients desperate to stop losing consciousness and having convulsions, among other symptoms of epilepsy. They must navigate the sometimes-murky CBD market without the benefit of regulations, guidance from doctors, or coverage from health insurers. In short, they are “at the mercy and the trust of the grower,” said Sirven, who practices at the Mayo Clinic in Jacksonville.

While the CBD industry is new territory for the FDA, people have used cannabis to treat epilepsy for centuries, according to a report co-authored by Sirven in the journal Epilepsy & Behavior.

More than 180 years ago, an Irish physician administered drops from a hemp tincture to an infant experiencing severe convulsions. “The child is now in the enjoyment of robust health, and has regained her natural plump and happy appearance,” Dr. William Brooke O’Shaughnessy wrote at the time.

Charlotte’s Web

Much of the recent interest in CBD stemmed from the 2013 CNN documentary “Weed,” which featured Charlotte Figi, then 5, who had hundreds of seizures each week. With the use of CBD oil, her seizures suddenly stopped, CNN reported. After that, hundreds of families with children like Charlotte migrated to Colorado, which had legalized marijuana in 2012.

Then in 2018, the federal government removed hemp from the controlled substances list, which allowed companies to ship CBD across state lines and meant families no longer needed to relocate.

The FDA still prohibits companies from marketing CBD products as dietary supplements and making claims about their benefits for conditions such as epilepsy.

“The FDA has really done little to protect consumers from an unregulated marketplace that they have created.”

— Megan Olsen, Council for Responsible Nutrition

The agency is gathering “research, data and other safety and public health input to inform our approach and to address consumer access in a way that protects public health and maintains incentives for cannabis drug development through established regulatory pathways,” Dr. Janet Woodcock, then the FDA’s acting commissioner, said in 2021, according to a dietary supplements trade group.

“The FDA has really done little to protect consumers from an unregulated marketplace that they have created,” said Megan Olsen, general counsel for the Council for Responsible Nutrition, a different dietary supplements trade group.

A recent study in Epilepsy & Behavior on 11 oils found that three contained less CBD than claimed, while four contained more. Charlotte’s Web contained 28% more CBD than advertised, according to the report. The study also pointed out that the problems “mirror concerns” raised for generic anti-seizure medications, which the FDA does regulate.

“I’m not anti-CBD,” said Barry Gidal, a professor of pharmacy and neurology at the University of Wisconsin-Madison who co-authored the study and worked as a consultant for the Epidiolex manufacturer. “There needs to be oversight so that patients know what they are getting.”

Some states, such as Michigan, have cannabis regulatory agencies. As such, Dr. Gregory Barkley, a neurologist at Henry Ford Hospital in Detroit, thinks that when a person shops at one of the state’s dispensaries, “you have a pretty good idea of what you’re getting.” Barkley regularly reviews his patients’ CBD products and discusses how many milligrams they take to help control their epilepsy.

But Barkley said CBD has inherent variability because it comes from a plant.

“It’s no different than saying, ‘I’m going to treat you with a Honeycrisp apple for an ailment.’ Every apple is a little bit different,” said Barkley. “The lack of standardization makes it difficult.”

About five years ago, Trina Ferringo of Turnersville, New Jersey, asked a pediatric neurologist about giving CBD to her teenage son, Luke, because his prescription drugs were causing severe side effects yet not preventing his epileptic seizures. The doctor was “adamantly opposed to it” because of the lack of FDA oversight and concerns it might contain THC, the chemical in marijuana that produces a high, Ferringo recalled.

Instead, in 2018, the doctor prescribed Epidiolex. Luke went from having several seizures each week to a couple per month. Ferringo is pleased with the outcome but now often fights with her insurance company because Epidiolex, which has a list price of $32,500 per year, isn’t approved for her son’s form of epilepsy.

Charlotte’s Web typically costs between $100 and $400 each month, depending on how much someone takes. Unlike Epidiolex, insurance never covers it.

Beyond the cost difference, it’s unclear whether a highly purified CBD product such as Epidiolex is more effective than products like Charlotte’s Web that contain CBD and other plant compounds, creating what scientists describe as a beneficial “entourage effect.”

A 2017 review of CBD studies in the journal Frontiers in Neurology, authored by scientists in the cannabis industry, found 71% of patients with treatment-resistant epilepsy reported a reduction in seizures after taking the CBD-rich products, but among patients taking purified CBD, the share was only 46%.

Patients taking CBD-rich products rather than purified CBD also reported taking lower daily doses and experiencing fewer side effects.

“Every cannabinoid when individually tested has a degree of anticonvulsant properties so that if you give a blend of various cannabinoids, they will have some additive effect,” Barkley said.

Changing CBD Regulations

Bipartisan legislation pending in Congress would designate CBD as a dietary supplement or food. The Senate version would allow the federal government to “take additional enforcement actions” against such products.

Jonathan Miller, general counsel to the U.S. Hemp Roundtable, a coalition of hemp companies, said the legislation would protect consumers and allow CBD manufacturers to sell their products in stores as dietary supplements.

However, Jensen Jose, counsel for the Center for Science in the Public Interest, said such legislation would actually make consumers less safe. The FDA does not have the authority to review dietary supplements for safety and effectiveness before they are marketed and does not routinely analyze their ingredients.

“If a CBD company right now is doing something questionable or potentially unsafe, the FDA can easily remove the product simply for being illegally marketed as a drug,” said Jose. If the legislation passes, he said, the FDA could not do that.

Instead, Jose said, Congress should provide the FDA with more authority to regulate CBD and dietary supplements and more funding to hire inspectors.

The FDA does not comment on pending legislation, spokesperson Courtney Rhodes said.

Patients like Taylor, the Colorado woman with epilepsy, aren’t waiting for the federal government. After the doctor’s visit, she borrowed money from family members and purchased a bottle of Charlotte’s Web.

“The effects were night and day,” she said. “I was able to get out of bed.”

She befriended a grower and spends about $50 per month on CBD powder, gummies, and oil. She now takes only one prescription medication for seizures rather than four. She has about one seizure per month, which means she can’t drive. Her medical providers still don’t seem open to discussing CBD, she said, but that doesn’t bother her much.

“After being on it for this many years and seeing the evidence — the 180-degree turnaround that my life made — it’s a choice I’m going to make whether they are with it or they are against it,” she said. “It’s working for me.”

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

Migraine Sufferers Have Treatment Options Besides Medication

By Dr. Danielle Wilhour

Migraine headaches currently affect more than one billion people across the globe and are the second-leading cause of disability worldwide. Nearly one-quarter of U.S. households have at least one member who suffers from migraines. An estimated 85.6 million workdays are lost as a result of migraine headaches each year.

Yet many who suffer with migraine dismiss their pain as simply a bad headache. Rather than seeking medical care, the condition often goes undiagnosed, even when other incapacitating symptoms occur alongside the pain, including light and sound sensitivity, nausea, vomiting and dizziness.

Researchers have discovered that genetics and environmental factors play a role in the condition of migraine. They happen when changes in your brainstem activate the trigeminal nerve, which is a major nerve in the pain pathway. This cues your body to release inflammatory substances such as CGRP, short for calcitonin gene-related peptide. This molecule, and others, can cause blood vessels to swell, producing pain and inflammation.

Medication Has Its Limits

A migraine can be debilitating. Those who are experiencing one are often curled up in a dark room accompanied by only their pain. Attacks can last for days; life is put on hold. The sensitivity to light and sound, coupled with the unpredictability of the disease, causes many to forego work, school, social gatherings and time with family.

Numerous prescription medications are available for both the prevention and treatment of migraine. But for many people, conventional treatment has its limitations. Some people with migraine have a poor tolerance for certain medications. Many can’t afford the high cost of the medicines or endure the side effects. Others are pregnant or breastfeeding and can’t take the medications.

However, as a board-certified neurologist who specializes in headache medicine, I’m always amazed at how open-minded and enthusiastic patients become when I discuss alternative options.

Your brain sends you warning signals, such as fatigue and mood changes, to let you know a migraine may be on the way.

These approaches, collectively, are called complementary and alternative medicine. It might be surprising that a traditionally trained Western doctor like me would recommend things like yoga, acupuncture or meditation for people with migraine. Yet in my practice, I value these nontraditional treatments.

Research shows that alternative therapies are associated with improved sleep, feeling better emotionally and an enhanced sense of control. Some patients can avoid prescription medications altogether with one or more complementary treatments. For others, the nontraditional treatments can be used along with prescription medication.

These options can be used one at a time or in combination, depending on how severe the headache and the cause behind it. If neck tension is a contributor to the pain, then physical therapy or massage may be most beneficial. If stress is a trigger, perhaps meditation would be an appropriate place to start. It is worth talking to your provider to explore which options may work best for you.

Mindfulness and Meditation

Because stress is a major trigger for migraines, one of the most effective alternative therapies is mindfulness meditation, which is the act of focusing your attention on the present moment in a nonjudgmental mindset. Studies show that mindfulness meditation can reduce headache frequency and pain severity.

Another useful tool is biofeedback, which enables a person to see their vital signs in real time and then learn how to stabilize them.

For example, if you are stressed, you may notice muscle tightness, perspiration and a fast heart rate. With biofeedback, these changes appear on a monitor, and a therapist teaches you exercises to help manage them. There is strong evidence that biofeedback can lessen the frequency and severity of migraine headaches and reduce headache-related disability.

Yoga derives from traditional Indian philosophy and combines physical postures, meditation and breathing exercises with a goal of uniting the mind, body and spirit. Practicing yoga consistently can be helpful in reducing stress and treating migraine.

Meditation is an alternative therapy that could help with your migraine.

Physical Therapy

Physical therapy uses manual techniques such as myofascial and trigger-point release, passive stretching and cervical traction, which is a light pulling on the head by a skilled hand or with a medical device. Studies show that physical therapy with medication was superior in reducing migraine frequency, pain intensity and pain perception over medications alone.

By lowering stress levels and promoting relaxation, massage can decrease migraine frequency and improve sleep. It may also reduce stress in the days following the massage, which adds further protection from migraine attacks.

Some patients are helped by acupuncture, a form of traditional Chinese medicine. In this practice, fine needles are placed in specific locations on the skin to promote healing. A large 2016 meta-analysis paper found acupuncture reduced the duration and frequency of migraines regardless of how often they occur. Acupuncture benefits are sustained after 20 weeks of treatment.

What’s also fascinating is that acupuncture can change the metabolic activity in the thalamus, the region of the brain critical to pain perception. This change correlated with a decrease in the headache intensity score following acupuncture treatment.

Vitamins, Supplements and Nutraceuticals

Herbal supplements and nutraceuticals, which are food-derived products that may have therapeutic benefit, can also be used to prevent migraine. And there is evidence to suggest vitamins work reasonably well compared to traditional prescription medication. They also have fewer side effects. Here are some examples:

• Magnesium is believed to help regulate the blood vessels and electrical activity in the brain. A study found that patients given 600 milligrams of magnesium citrate daily for 12 weeks had a 40% decrease in migraine. Side effects included diarrhea in nearly 20% of patients.

• Vitamin B2, or riboflavin, is also considered useful in migraine prevention. When dosed at 400 milligrams daily for 12 weeks, researchers found it reduced migraine frequency by half in more than half of participants.

• Another beneficial supplement is Coenzyme Q10, which is involved in cellular energy production. After three months, about half of those taking 100 milligrams of Coenzyme Q10 three times a day had half the number of migraine attacks.

• A potential natural solution is feverfew or Tanacetum parthenium, a daisylike perennial plant known to have anti-migraine properties. Taken three times daily, feverfew reduced migraine frequency by 40%.

Medical Devices

The Food and Drug Administration has approved several neurostimulation devices for migraine treatment. These devices work by neutralizing the pain signals sent from the brain.

One is the Nerivio device, which is worn on the upper arm and sends signals to the brainstem pain center during an attack. Two-thirds of people report pain relief after two hours, and side effects are rare.

Another device that shows promise is the Cefaly. It delivers a mild electrical current to the trigeminal nerve on the forehead, which can lessen the frequency and intensity of migraine attacks. After one hour of treatment, patients experienced a nearly 60% reduction in pain intensity, and the relief lasted up to 24 hours. Side effects are uncommon and include sleepiness or skin irritation.

These alternative therapies help treat the person as a whole. In just my practice, many success stories come to mind: the college student who once had chronic migraine but now has rare occurrences after a regimen of vitamins; the pregnant woman who avoided medication through acupuncture and physical therapy; or the patient, already on numerous prescription medications, who uses a neurostimulation device for migraine instead of adding another prescription.

Granted, alternative approaches are not necessarily miracle therapies, but their potential to relieve pain and suffering is notable. As a physician, it is truly gratifying to see some of my patients respond to these treatments.

Danielle Wilhour, MD, is an Assistant Professor of Neurology, University of Colorado Anschutz Medical Campus. Her primary interests include non-pharmacologic treatment of headache as well as headache during pregnancy.  Danielle does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article.

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

Be Careful What You Wish For: Cancer Is Not a Way Out From Pain

By Cynthia Toussaint, PNN Columnist

When my oncologist recently spewed the worst word I’ve ever heard -- “recurrence” -- everything in my mind sped up and stopped at the same time. I made a brutal fight for my life in 2020 against Triple Negative Breast Cancer, but came up short.   

Now launching my second battle, a misguided myth disheartens me. Many of us with pain say things like, “I wish I’d been lucky and gotten cancer instead, because with cancer you either die or get better.”

WRONG! I now see this thinking as a cop out, a “poor me” pity party and gross disrespect for those who fight for their lives.

Let me break the suspense. If you ever get the Big C, it will not deliver you from your suffering. You won’t be jumping up and down with glee because your pain problems are over. Like the rest of us, you’ll take on the fight of your life and your pain will quickly take a back seat.  

Here’s more upending news about the “deliverance” mythology: With all of cancer’s apparent “perks” (abundant research, unending sympathy, bountiful support, etc.), it’s anything but the ticker-tape parade of arm-locked togetherness. In reality, an aggressive cancer diagnosis is a new brand of isolating, hellish suffering with death as a probable outcome.

Then there’s this: Cancer fetches a morbid world of trespasses. Many project their fears by pummeling us with religious fervor. It’s unsettling to receive pious magazines and missives about the new body I’ll soon have, the one without pain. Friends and people I don’t know remind me of how lucky I am to be nearing death’s door, because the other side will be paradise.

A head’s up! With cancer, even more than being in a wheelchair, one becomes public domain, open to an onslaught of good intentions delivered with a heaping side of judgement.

And there are the bizarre jealousies. I can’t believe I’m writing this. Have you ever noticed that many in the pain world compete? It’s all too often about who’s the sickest, who’s agonizing most. When you go to the front of the line with cancer, people can get cruel because you’re hailed as the winner of the “Can’t Get Worse Than This” award. Well, three cheers for me!

Soul-Sapping Support

Most heartbreaking, just when I thought my support system couldn’t atrophy further, people have scurried. A number of my close friends who stayed through my decades of pain have stunningly distanced themselves or pulled away altogether. Friends that I believed were strong enough to withstand anything, my rocks, crumbled.

And, ah yes, the platitudes. If I hear “You got this” one more time, I may lose whatever I still got. “Good luck” while walking away has become code for “I’m not strong enough for this scene, but I hope you can keep yourself above ground.”

Then there’s the classic, “If you just think positively, everything will be fine.” Far from it. Faking positivity is the most energy-draining, soul-sapping activity known to humankind.   

Have you ever heard the term, “scanxiety”? If not, that’s because you haven’t had cancer with its phobic-driving medical scans that endlessly loom. It may surprise you (it did me!) to learn that cancer falls into the chronic illness category, a potentially terminal co-morbidity. Even if you hit the jackpot of remission, you’re doomed to a life of fearful obsession over the possibility of recurrence. With cancer, I guarantee you’ll never, ever again be gifted a moment of real peace.        

For these reasons, and the many I don’t have room to share, I implore you to stop thinking that cancer is the way out of pain. To the contrary, if you’re ever diagnosed with a life-threatening malignancy, you’ll be praying for the good ol’ days. Just as I do.

Also, it’s an insult. There are many of us, fighting for our lives and weathering horrendous therapies just to have one more shot -- therapies that often leave us with increased life-long pain. So, please check yourself the next time you have the impulse to blithely state how people with cancer are the lucky ones.

I’m ashamed of the things I used to think and say. I was wrong and out of line. I apologize to all, past, present and future, who had, have or will have courage I didn’t honor.

Sorry for the finger-wagging. I know we’re struggling to cope with the day-to-day torture of our pain, along with the dread that our suffering will likely go on till we’re no longer. But desiring worse isn’t the answer. I guess I’ve seen too much now to put up with ignorance and lack of self-worth. Cancer does that to you, especially the second time around.

This boils down to the power of thoughts and words. I believe they have the sway to make us sick or well. Choose them wisely, and be careful what you wish for.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

I’m Living Proof That Effective Pain Management Can Heal

By Heather Grace

My journey into what would become debilitating pain began at age 19, when my neck was injured in a head-on collision caused by a drunk driver. Being a backseat passenger in an older car meant there were no headrests.

I healed as best I could after the accident with chiropractic care and exercise. I was young and told myself I’d be fine, but sensed I wasn’t quite the same as before.

Nearly a decade of work in the IT field worsened the severity of my injury, due to faulty ergonomics. Between the severe pain and the horrors of the workers compensation system, it began to feel like I was in free fall. At my first visit with a prominent pain management specialist, I was told, “Normal is out the window for you.”

It was the worst thing I’d ever heard, so I began sobbing. What he said wasn’t actually cruel, it was honest. He could see that my body was broken by work comp care that included two botched neurosurgeries and one spinal discectomy-fusion surgery that came far too late to be a good thing. 

I was left with intractable pain and nerve damage, which would be diagnosed as Complex Regional Pain Syndrome (CRPS) Type II. The CRPS is not regional at all, but spread to the whole body, thanks to the impact on my spinal column and brain.

I would later also learn that I was born with Ehlers-Danlos Syndrome, a progressive connective tissue disease.

HEATHER GRACE

Intractable Pain Syndrome (IPS) isn’t well understood in mainstream medicine because it’s not very common. In fact, even after working in Continuing Medical Education for 10 years, I’d never heard of IPS until I was diagnosed with it. I didn’t know that it was possible to be in severe unceasing pain.

People with IPS experience major health problems throughout their lives because of the physical and psychological toll that pain takes on the brain and body. Treatment for this complex and disabling condition must be taken seriously and done correctly.

A New Future

After all this was explained to me by my doctor, I realized that to move forward with my life, I had to stop pinning my hopes on returning someday to “normal.” I had to grieve the loss of my former life. Once I did, a door was opened to a meaningful future for me.

Thanks to amazing treatment with a physician who also helped me focus on the future, I’m living again in a way I didn’t think was possible when I first sat down with my doctor in 2006. He found the right treatments for me, which included opioid pain medication.  

I’ve reduced my medication dose slowly over the years. I’m now taking less than one sixth the pain medication I started with. That’s because I’ve experienced neurogenesis, a form of healing in my nervous system.

It is possible for people like me to heal, albeit very slowly over time when they get the care that they need. Despite the severity of my conditions, I’m doing well. Contrary to popular opinion, patients who get the proper dose of pain meds don’t always require more and more medication. While some patients’ dosages stay the same, some of us are able to lower our doses when our health improves.  

I’ve come so far. In 2004, when I left the job I loved awaiting two major surgeries, I thought I’d never work again. But I was able to obtain a full-time job (with benefits!) in 2020. It required a major effort, but I got here because I had a good foundation of long-term effective pain management, which lessened the impact of pain on my overall wellness.

Opioid medication does not define my care, nor my life. Pain meds are merely a tool I’ve used to get well. Every patient should have access to individualized pain care with the treatment options that best work for them. It’s crucial for patients if they’re ever going to see their health improve.

I won’t lie, it’s been a struggle and I have had my share of setbacks too. Yet I know without question that pain medication was required in my case. It made a serious difference in my overall health and paved the way to my future too.  

Effective pain management for someone with IPS is as vital as care for any other serious illness. You’d never tell a diabetic that an arbitrary maximum dose of insulin was all they were allowed to have. Why are pain patients any different? None of us asked for the pain, nor do we like having to take a prescription drug that’s so socially maligned. These judgments exist nowhere outside of pain management. Why are people in pain treated so differently and with such suspicion?  

The fact is, when the CDC’s opioid prescribing guideline was released in 2016, the consequences were far-reaching and dire. Countless patients have needlessly suffered and died because they lost access to opioids or were tapered, based on the guideline’s recommendations. Many of those deaths have been due to the pain finally overtaking the body. Other patients have chosen to end their pain via suicide. Imagine being so ill that you were forced to make such a choice!  

Without access to effective individualized treatment by physicians whose options aren’t stifled by a system that doesn’t understand pain, many more people with serious diagnoses will develop intractable pain.

Those outside the treatment setting have no business undermining patients’ pain care protocols. They simply don’t have the knowledge to be involved on that level. That goes for the CDC, DEA, state medical boards and insurance companies — along with anyone else who gets in the way of pain patients having effective care. 

Sadly, I know it’s the workers compensation system that led to the severity of my illness. I got an extensive education on how an overburdened system not designed for people with serious healthcare needs can result in disability.  

Please don’t jeopardize the future of an entire branch of medicine any further. There are human lives on the line. Everyone knows someone living with chronic pain. Make the changes needed to continue treating people like me — people whose lives don’t have to end because they have a serious injury or illness. It’s crucial to roll back the damage done by the CDC guideline before we all lose access to pain management forever.

Heather Grace is a patient, advocate and member of For Grace’s Board of Governors. She’s worked for health-focused nonprofits most of her career & developed Continuing Medical Education (CME) for nearly a decade. Heather lives with Complex Regional Pain Syndrome II and the genetic condition Ehlers-Danlos Syndrome. Heather has a website on pain issues called Intractable Pain Journal.

Nearly Half of CBD Oils Are Mislabeled

By Pat Anson, PNN Editor

CBD oils derived from hemp are increasingly being used to relieve painful conditions. Studies have found the oils effective in treating migraines and fibromylagia, and recent research found that a proprietary blend of CBD oil helped relieve symptoms in 9 out of 10 people suffering from chronic pain.

But a new study at the University of Kentucky College of Medicine found that nearly half of the CBD oil products tested in a lab were mislabeled. Of the 80 CBD oils purchased online or in retail stores, only 43 had concentrations of cannabidiols that were within 10% of their label claims – an accuracy rate of just 54 percent.

One oil had a CBD concentration that was 159% higher than its label indicated. Another oil had only 17% of the CBD it was supposed to have.

“As most consumers are using CBD products as therapeutic treatments for some types of medical condition, the dosing is important when considering the potential for CBD accumulation, elevation of liver enzymes, and drug-drug interactions,” lead author Erin Johnson reported in the Journal of Cannabis Research.  

“The findings reported here emphasize the continued need for clear and consistent regulation from federal and state agencies to ensure label accuracy of CBD products and subsequent enforcement. These results also indicate the need for continued development of good manufacturing practices and testing standards.”

In a separate analysis of the same CBD oils, Johnson and her colleagues found that most contained trace amounts of THC (tetrahydrocannabinol), the psychoactive substance in cannabis. Five of the 21 CBD oils that were labeled "THC Free" contained detectable levels of THC.

"THC is not allowed at the Olympics. It's not allowed in many sports organizations. But athletes use CBD because it helps them recover, and it helps them with different facets of their training," co-author Shanna Babalonis said in a press release. "So I think that one of the key takeaways from this work is to say that the public needs to question whether there's THC in their CBD products."

The two studies are certainly not the first to find that cannabis products are often mislabeled. They point to a continuing problem since passage of the 2018 Farm Bill, which legalized hemp under federal law. Although hemp contains only trace amounts of THC, cannabis companies have found ways to tweak its chemical composition to produce concentrated levels of delta-8 THC, which has a mild psychoactive and intoxicating effect.

The FDA considers delta-8 THC to be an unapproved drug, but because it comes from hemp – a legal substance – its regulatory status is unclear. Recently, the FDA sent the first warning letters to five cannabis companies, not for mislabeling, but for making unsubstantiated medical claims about delta-8 THC.  

Until the FDA or individual states confront the widespread mislabeling of CBD products, industry insiders say it’s likely to continue. 

“The mislabeling of Delta-8 products is not surprising but is a result of poor quality controls that are present through the category. Delta 8 can be unsafe for people to use, especially if it not labeled. This is due to the psychoactive component of Delta 8,” said John McDonagh, CEO of CBD producer NextEvo Naturals.  

“Some states have started to regulate Delta 8 to take it off the market. The FDA is limited as it doesn’t have sufficient enforcement resources, so the best solution for now is for states to take action.”

Feds Warn Kratom Vendors About Marketing for Addiction Treatment

By Pat Anson, PNN Editor

The Food and Drug Administration and Federal Trade Commission have sent warning letters to four kratom vendors saying they are in violation of federal law for selling “unapproved new drugs.” The letters to Herbsen Botanicals, Klarity Kratom, Kratom Exchange and YoKratom primarily focus on their marketing of kratom as a treatment for opioid addiction.

Kratom is a dietary supplement that comes from the leaves of the mitragyna speciosa tree in southeast Asia, where it has been used for centuries as a natural stimulant and pain reliever. In recent years, millions of Americans have discovered kratom and use it to self-treat their pain, anxiety, depression and addiction. Kratom is sold legally in most U.S. states, but vendors can run into trouble if they claim it can be used to treat medical conditions.

“You market kratom products for the treatment or cure of opioid addiction and withdrawal symptoms. However, these products have not been determined by FDA to be safe and effective for these (or any other) uses,” the agencies said in their letter to Herbsen Botanicals. “Further, the unproven treatments could cause patients to forego or delay FDA-approved treatments for opioid addiction or withdrawal. The marketing and sale of unapproved opioid addiction treatment products is a potentially significant threat to the public health.”

The letter cites several blog posts on Herbsen’s website, which claim that kratom is a “common recommendation to manage opioid addiction” and “delivers similar effects” as morphine and codeine. Herbsen also has a lengthy disclaimer on its website saying such statements “are not intended to diagnose, treat, cure or prevent any disease or ailment.”

The FDA has tried for years -- unsuccessfully – to schedule kratom as a controlled substance, which would effectively ban its sale and use in the United States. Having failed to achieve that goal, the agency has resorted to occasional warning letters, import alerts and seizures of kratom.   

In a recently updated online fact sheet, the FDA said kratom’s effects on the brain are similar to morphine and that kratom has “properties that expose users to the risks of addiction, abuse, and dependence.”

‘Kratom Saved My Life’

Addiction treatment is one of the main reasons that people use kratom. In a large PNN survey of over 6,400 kratom users, about one in ten said they primarily used the plant to treat opioid addiction or alcoholism. Several said it was more effective than methadone or Suboxone in relieving withdrawal symptoms.

“Kratom saved my life. I tried every other type of treatment for drug addiction over the past 10 years,” one respondent wrote. “After 2 years of Suboxone, I stopped treatment & began using kratom. I've made more progress toward my ultimate goal of total sobriety in 2 years of self-administered kratom then 5+ years of suboxone & methadone treatment.”

“Due to 3 surgeries, I became hooked on Oxy and had to take Suboxone to get off it. The problem is Suboxone withdrawals were nearly as bad, so I used Kratom to cure that,” said another.

“Not only is this a wonderful alternative for people with chronic pain. but this also could greatly reduce our heroin epidemic crisis going on in our country. After years of being physically dependent on legally prescribed Suboxone, I was unsuccessful at my attempts to get off of them. Kratom made it possible, and I believe would help others trying to get off any opiates and live full and productive life,” another poster said.

In recent testimony before Congress, FDA commissioner Dr. Robert Califf warned that kratom was a harmful substance that has caused “real adverse events, real negative things that have happened to people.” Califf also said the agency may need new authority from Congress to regulate kratom and other supplements that are not “traditional drugs.”

Federal Judge Rejects Opioid ‘Public Nuisance’ Claims

By Pat Anson, PNN Editor

A federal judge in West Virginia has ruled that three major drug distributors did not fuel the opioid epidemic by shipping excessive amounts of opioid pain medication to pharmacies in Cabell County and the City of Huntington. According to one estimate, about 10% of people in the county are addicted to opioids.

“The opioid crisis has taken a considerable toll on the citizens of Cabell County and the City of Huntington. And while there is a natural tendency to assign blame in such cases, they must be decided not based on sympathy, but on the facts and the law,” Judge David Faber wrote in his 184-page ruling, which rejected claims that AmerisourceBergen, Cardinal Health and McKesson State acted in a way that made them a “public nuisance” under state law.

“To apply the law of public nuisance to the sale, marketing and distribution of products would invite litigation against any product with a known risk of harm, regardless of the benefits conferred on the public from proper use of the product,” the judge said. “The economic harm and social costs associated with these new causes of action are difficult to measure but would obviously be extensive. If suits of this nature were permitted any product that involves a risk of harm would be open to suit under a public nuisance theory regardless of whether the product were misused or mishandled.”

Judge Faber is the first federal judge to reject public nuisance claims in opioid litigation. State judges in California and Oklahoma made similar rulings last year.

The three drug distributors had previously agreed to multi-billion dollar settlements with dozens of states, but Cabell County chose not to be a part of those agreements, as did other counties in West Virginia, which has long been considered “ground zero” of the opioid epidemic.

“This case was always about holding these distributors accountable and providing our doctors, nurses, counselors, first responders and social workers with some of the resources needed to combat the opioid crisis. These companies were part of a powerful industry responsible for fueling the epidemic here in Huntington and across the country,” Huntington Mayor Steve Williams said in a statement.

Judge Faber acknowledged that prescription opioids were a “significant cause of drug overdose deaths” in Huntington and Cabell County. But he said the city and county failed to prove that drug distributors acted unlawfully or that the amount of opioids they shipped to pharmacies was unreasonable.

The three companies supplied retail pharmacies in Cabell County with over 51 million hydrocodone and oxycodone pills over an eight-year period. That works out to 67 pills annually for every man, woman and child in the county. It would be a month’s supply for a typical chronic pain patient, who might be prescribed 2 to 3 pills a day, depending on the dose and type of opioid.

“The volume of prescription opioids in Cabell/Huntington was determined by the good faith prescribing decisions of doctors in accordance with established medical standards,” Faber said. “Defendants shipped prescription opioid pills to licensed pharmacies so patients could access the medication they were prescribed.”

Public Health Problems   

Judge Faber also pointed out the poor state of public health in West Virginia, which has high rates of disability, arthritis, cancer, obesity and other health conditions that contribute to pain.

“The West Virginia population is relatively older and has relatively higher levels of obesity as well as a higher than average number of disabled persons, all of which tend to generate more needs for pain treatment,” Faber wrote. “Manual and physical labor is a significant component of the West Virginia economy and tends to generate more needs for pain treatment.”

In 2018, West Virginia became one of the first states in the country to impose hard limits on opioid prescribing, limiting first-time opioid prescriptions to 7 days’ supply and requiring refilled opioid prescriptions to be limited to 30 days’ supply.  

Sixty-four weeks after the law was adopted, opioid prescriptions overall dropped by 22% in West Virginia, similar to how prescribing trends have changed nationally.  The reduced prescribing, however, has failed to reduce drug overdoses, which have risen to record levels.

According to a new CDC database, West Virginia has the second highest overdose rate in the country and leads the nation in drug deaths involving illicit fentanyl, prescription opioids, stimulants and methamphetamine. In 2020, only 5.2% of the overdose deaths in West Virginia involved a patient being treated for pain.