NSAIDs May Worsen Arthritis Inflammation

By Pat Anson, PNN Editor

Ibuprofen, naproxen and other non-steroidal anti-inflammatory drugs (NSAIDs) are often recommended as safer and more effective pain relievers than opioids. As evidence, anti-opioid activists often cite a 2018 study that found NSAIDs worked “significantly better” than opioids in reducing pain intensity for patients with osteoarthritis.

That study by VA researcher Erin Krebs, MD, is cited nearly a dozen times in the newly revised CDC opioid guideline, which recommends that patients avoid opioids and use topical or oral NSAIDs for osteoarthritis pain.

But according to a new long-term study, NSAIDs may actually worsen inflammation and weaken cartilage in patients with knee osteoarthritis, contributing to a painful joint condition called synovitis.

“The goal of our study was to analyze whether NSAID treatment influences the development or progression of synovitis and to investigate whether cartilage imaging biomarkers, which reflect changes in osteoarthritis, are impacted by NSAID treatment,” says lead author, Johanna Luitjens, MD, a postdoctoral scholar in the Department of Radiology and Biomedical Imaging at the University of California, San Francisco.

“NSAIDs are frequently used to treat pain, but it is still an open discussion of how NSAID use influences outcomes for osteoarthritis patients. In particular, the impact of NSAIDs on synovitis, or the inflammation of the membrane lining the joint, has never been analyzed using MRI-based structural biomarkers.”

Luitjens and her colleagues enrolled 277 people with moderate to severe osteoarthritis who used NSAIDs for at least one year, comparing them to a control group of 793 patients who were not treated with NSAIDs. All participants underwent an MRI of the knee at the start of the study and had another MRI four years later. 

The results showed no long-term benefits from NSAID use. The initial MRIs found joint inflammation and cartilage quality were worse in the participants taking NSAIDs, and their knee joints deteriorated even more after four years. 

“In this large group of participants, we were able to show that there were no protective mechanisms from NSAIDs in reducing inflammation or slowing down progression of osteoarthritis of the knee joint,” said Luitjens, who will present her findings next week at the annual meeting of the Radiological Society of North America (RSNA).

Luitjens says there are two possible reasons for the ineffectiveness of NSAIDs. One is that the anti-inflammatory effects of NSAIDs may not be sufficient to prevent synovitis. It’s also possible that patients with synovitis who use NSAIDs may be more physically active due to pain relief, which could have worsened their synovitis. 

In either case, Luitjens believes more evidence is needed to support the continued use of NSAIDs as a treatment for osteoarthritis.

“The use of NSAIDs for their anti-inflammatory function has been frequently propagated in patients with osteoarthritis in recent years and should be revisited, since a positive impact on joint inflammation could not be demonstrated,” she said.

The 2018 Krebs study did not look at how NSAIDs affected joint inflammation. It focused mainly on pain intensity, function and quality of life, and found few differences between opioids and NSAIDs, leading Krebs to conclude that opioids were “not superior” to NSAIDs. As my late colleague Roger Chriss pointed out, researchers also found no harmful effects in patients who took opioids for a year. There was no opioid misuse, addiction or overdoses — a detail rarely mentioned in news coverage of the study.

Osteoarthritis is a joint disorder that leads to thinning of cartilage and progressive joint damage. Knee osteoarthritis is quite common and affects over 250 million people worldwide. Nearly 40 percent of Americans over the age of 45 have some degree of knee osteoarthritis.

Why Words Can Hurt

By Mia Maysack, PNN Columnist

When my pain journey began over two decades ago, I didn’t have a “survival technique” or “coping mechanism.”  It was the ideology behind "positivity " that aligned most with me.

Any fixation on my ailments would have surely led to my death. In fact, it almost did, because anyone would start to lose it after experiencing what I and many others have: a lifelong, incurable, untreatable and unending physical discomfort.

Given the negativity that surrounds such an existence, my mission in life became to seek out the silver lining of things. I remind myself that life is a fragile gift, which helps to center and ground me. A slogan I've lived by is: I'd rather be alive and hurting than 6 feet under and feeling nothing.

But as the years passed and medical complications intensified, making the choice to strive toward an attitude of empowerment became not quite as achievable or potent as it had been. I found myself struggling in ways I wasn't sure how to manage. A life I'd rebuilt from scratch began slipping away into chronic oblivion -- yet again.

The distress reluctantly led me back into a clinical setting, where a healthcare professional shook me to my core by declaring: “You claim to be positive, but you're not. You aren’t living that." 

I was stunned! This person did not really know me. I felt overwhelmed at their audacity to make such an outrageous accusation! 

"I’m one of the most positive people I know," I told him. 

"It's not a decision you've made," was his reply.   

I left so perturbed. How dare they?

This individual knew nothing about how my body typically feels, the strength it takes to greet a new day, or to spend and wager absolutely every energy penny I possess just to make it through.

I sat with this experience for a long time, until a light bulb went on and I was faced with the realization: the provider was right!

As my disorders evolve or shift, different approaches and modalities are going to be required. This includes our attitude and mindset. Until then, I wasn’t fully embracing a more uplifting way to live. The pursuit of wellness had been solely residing inside my head, as opposed to being a place where I operated from. Positivity is a lifestyle that needs to be practiced.  

It wasn't possible for me to move forward while also clinging so tightly to my past. I have been shaped by those experiences and wouldn't be who I am without them, but they are not an adequate reflection or accurate depiction of my identity.

For example, a loved one recently shared their disinterest in associating themselves with the word “trauma.” This is somebody whose life has consisted of experiences most would consider to be the worst trauma, but they’ve chosen not to embrace that terminology. Someone else I care about refuses to identify with the word “victim.”

Personally, I attempt to steer clear of words such as “suffering” or being a “patient.” I also refrain from describing something as “negative” or “positive.” That labeling limits my overall perception and eliminates the ability to accept something as it is happening. 

The more I’m preoccupied with judgment or labeling, the less space there is for compassion and curiosity to exist. Of course, there’s nothing wrong in identifying with these phrases -- I certainly have. We’re also trying to gain acceptance from the general public, and relating to our “suffering” and “trauma” makes it more understandable. 

But the power of words and the way we refer to ourselves, interact with one another, and tell our stories, does matter. We need to use the words selectively, without letting ourselves be defined by them.       

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

4 Oldies But Goodies That Relieve Back Pain

By Dr. Forest Tennant, PNN Columnist 

In our studies, we routinely review persons with adhesive arachnoiditis (AA), Ehlers-Danlos Syndrome, Tarlov cysts and Epstein Barr autoimmunity. Our bulletins have, for the last two years, focused on new discoveries such as autoimmunity, medicinal agents, spinal fluid flow exercises, MRIs and laboratory testing.  

It’s a little embarrassing, but we haven’t sufficiently emphasized that some older treatments can still bring a lot of relief.  

AA causes considerable imbalance and unusual stretches to the muscles, tendons, nerves, and joints in the back, hips and pelvis. Consequently, these tissues become sprained, strained and inflamed. Many “old-time” measures can heal these tissues and enhance comfort and mobility. Here is a short summary of four that will be around for a long time since they simply provide comfort and relief. 

1. Ultrasound: Several years ago, we started using ultrasound for AA. The theory is that it may break up adhesions. While this may or may not happen, ultrasound often provides immediate relief that can last days or weeks. Medications such as cortisone cream can also be administered during ultrasound, which boosts their effectiveness. There are now hand-held ultrasound devices that can be purchased for use at home. 

2. Epsom Salts: Foot baths with minerals are convenient and soothing. Epsom salt baths are generally believed to “pull out” or detoxify the body of excess electricity and toxins. They can be most helpful for burning feet sensations and stabbing pains in the legs. 

3. Heating Pad: Heat dilates blood vessels, which brings more oxygen to the treated area and promotes healing. Heat also relaxes muscles that may be in spasm. 

4. Transcutaneous Electrical Nerve Stimulation (TENS): Electrical currents act as an anesthetic on nerves and nerve roots. Pain in persons with AA may temporarily abate when an electric current is administered over the lower back. TENS can often break a flare.

The human body has remained unchanged for thousands of years. Remedies and treatments discovered long ago may still be applicable today. AA has many associated conditions including spinal fluid leaks, inflammation in tissues around the spine, muscle spasm, and radiating pain among others. Some “old-time” treatments may be a welcome adjunct to the 3-component medical protocols.

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 an updated bulletin recently issued by the Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should click here.

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

Are Chronic Pain Patients Being Tortured?

By Carol Levy, PNN Columnist

“This is how you do torture. Just reduce their tolerance level so low, all you have to do is touch them.”

That’s what an ophthalmologist said to a medical resident as he examined my eye, triggering my trigeminal neuralgia pain.

“They burned my fingers. All they wanted was information. I would have told them anything just to stop the pain.” That’s from an episode of Law & Order.

I haven't tested my theory, but I imagine if you asked a healthy person if chronic pain was akin to torture, the answer would be a resounding, “No. Of course not.”

Torture is defined by Merriam Webster this way: 

“The infliction of intense pain (as from burning, crushing, or wounding) to punish, coerce, or afford sadistic pleasure. Something that causes agony or pain; anguish of body or mind.”

Definitionally, chronic pain patients are not being tortured, because the pain is not being inflicted as punishment, coercion or sadistically. On the other hand, we are definitely being tortured because pain does indeed cause us agony and anguish.

The injunction against torture is spelled out in the Geneva Convention and other international laws when engaging in war, but not when the war is within our own bodies.

The U.S. Congress has twice tried to deal with pain. In 2000, the Pain Relief Promotion Act was introduced. The naming of the bill sounds good, but some of its provisions are Orwellian. It called for a criminal penalties against physicians of up to 20 years in jail and revocation of their DEA license if they knowingly prescribed a controlled substance used in assisted suicide. Some physicians were concerned the bill could lead to charges if they prescribed opioids to patients who overdosed, intentionally or not.

In 2005, the Conquering Pain Act was introduced. It called for federal health officials to develop an “evidence-based practice guidelines for pain treatment” to address “the public health crisis of pain.” 

Neither Act was approved. But many of the things they called for have come to pass.  

Many have posited that under the 1990 Americans with Disabilities Act (ADA), pain patients have a right to opioids and other treatments. That unfortunately is not the case. Under the ADA, disabled people who are prescribed opioids cannot be discriminated against in employment and access to public facilities. However, the ADA does not address the prescribing decisions of doctors.

More recently, the U.S. Supreme Court ruled 9–0 in favor of two doctors who were convicted of acting as drug dealers by “overprescribing” opioids. The decision gives physicians charged with illegally prescribing opioids a fighting chance in court, because it requires prosecutors to prove that they had criminal intent. 

Where does this leave us? Will it change the legal landscape for doctors and patients? Will physicians who prescribe opioids based on their patients’ symptoms, diagnoses and suffering be less fearful? That is yet to be seen. 

Change takes time and one court ruling does not seem like much. But maybe we can look at it as a sliver of light, an opening that we can use to shine a brighter light onto us and our needs. 

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.

‘Promising Results’ for Low-Dose Naltrexone as Pain Reliever

By Pat Anson, PNN Editor

Low-dose naltrexone (LDN) continues to get more recognition from the medical community as a treatment for some types of chronic pain.

In a review of 47 studies on the off-label use of LDN, researchers at the University of Kansas Medical Center found “promising results” that naltrexone improves pain and function and reduces symptom severity in patients with chronic inflammatory or centralized pain. Most of the studies were small, however, and larger clinical trials are needed to demonstrate LDN’s efficacy.

“Though the results look promising, further, more well controlled studies are required before formal recommendations can be made,” said lead author Adam Rupp, DO, who will present his findings this week at the annual meeting of the American Society of Regional Anesthesia and Pain Medicine (ASRA) in Orlando, Florida.

Naltrexone is an inexpensive generic drug that is only approved by the Food and Drug Administration as a treatment for substance abuse. In 50mg doses, naltrexone blocks opioid receptors in the brain and decreases the desire to take opiates or alcohol.  

But in smaller doses of 5mg or less, patients with fibromyalgia, interstitial cystitis, intractable pain and other chronic conditions have found LDN to be an effective pain reliever. But because LDN is prescribed “off label” for pain, much of the evidence supporting LDN is anecdotal.

How naltrexone works is not entirely clear, but LDN supporters believe the drug helps modulate the immune system, reducing inflammation and stimulating the production of endorphins, the body's natural painkiller. LDN is not recommended for people currently taking opioid medication because it blocks opioid receptors and may cause withdrawal.

In their literature review, Rupp and his colleagues found that LDN improved physical function, sleep, mood, fatigue and quality of life in patients with Complex Regional Pain Syndrome (CRPS), fibromyalgia, diabetic neuropathy, Crohn’s disease, rheumatoid arthritis and low back pain. In patients with Crohn’s, improvements were also noted in the colon’s appearance during colonoscopies.

Side effects from LDN were minimal, consisting most commonly of vivid dreams, headaches, diarrhea and nausea. Most of the side effects resolved with continued use of LDN.

“The evidence in this review provides support for the off-label use of LDN for various chronic
inflammatory or centralized pain conditions. However, it is apparent that high-quality controlled studies focusing on administration, dosing and follow up time are needed before formal recommendations can be made,” Rupp said.

“Despite the current paucity of high-quality evidence in the literature, LDN continues to offer promising results in the management of symptoms in patients with chronic inflammatory or centralized pain conditions.”

Because LDN is not recommended as a pain treatment by the FDA or professional medical societies, patients interested in trying it often encounter doctors who refuse to prescribe it or don’t know anything about it. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website.

How Inflammation Can Lead to Chronic Pain

By Drs. Prakash Nagarkatti and Mitzi Nagarkatti, University of South Carolina

When your body fights off an infection, you develop a fever. If you have arthritis, your joints will hurt. If a bee stings your hand, your hand will swell up and become stiff. These are all manifestations of inflammation occurring in the body.

We are two immunologists who study how the immune system reacts during infections, vaccination and autoimmune diseases where the body starts attacking itself.

While inflammation is commonly associated with the pain of an injury or the many diseases it can cause, it is an important part of the normal immune response. The problems arise when this normally helpful function overreacts or overstays its welcome.

Generally speaking, the term inflammation refers to all activities of the immune system that occur where the body is trying to fight off potential or real infections, clear toxic molecules or recover from physical injury. There are five classic physical signs of acute inflammation: heat, pain, redness, swelling and loss of function. Low-grade inflammation might not even produce noticeable symptoms, but the underlying cellular process is the same.

Take a bee sting, for example. The immune system is like a military unit with a wide range of tools in its arsenal. After sensing the toxins, bacteria and physical damage from the sting, the immune system deploys various types of immune cells to the site of the sting. These include T cells, B cells, macrophages and neutrophils, among other cells.

The B cells produce antibodies. Those antibodies can kill any bacteria in the wound and neutralize toxins from the sting. Macrophages and neutrophils engulf bacteria and destroy them. T cells don’t produce antibodies, but kill any virus-infected cell to prevent viral spread.

Collateral Damage

Additionally, these immune cells produce hundreds of types of molecules called cytokines – otherwise known as mediators – that help fight threats and repair harm to the body. But just like in a military attack, inflammation comes with collateral damage.

The mediators that help kill bacteria also kill some healthy cells. Other similar mediating molecules cause blood vessels to leak, leading to accumulation of fluid and influx of more immune cells.

This collateral damage is the reason you develop swelling, redness and pain around a bee sting or after getting a flu shot. Once the immune system clears an infection or foreign invader – whether the toxin in a bee sting or a chemical from the environment – different parts of the inflammatory response take over and help repair the damaged tissue.

After a few days, your body will neutralize the poison from the sting, eliminate any bacteria that got inside and heal any tissue that was harmed.

Inflammation is a double-edged sword. It is critical for fighting infections and repairing damaged tissue, but when inflammation occurs for the wrong reasons or becomes chronic, the damage it causes can be harmful.

Allergies, for example, develop when the immune system mistakenly recognizes innocuous substances – like peanuts or pollen – as dangerous. The harm can be minor, like itchy skin, or dangerous if someone’s throat closes up.

Chronic inflammation damages tissues over time and can lead to many noninfectious clinical disorders, including cardiovascular diseases, neurodegenerative disorders, obesity, diabetes and some types of cancers.

The immune system can sometimes mistake one’s own organs and tissues for invaders, leading to inflammation throughout the body or in specific areas. This self-targeted inflammation is what causes the symptoms of autoimmune diseases such as lupus and arthritis.

Another cause of chronic inflammation that researchers like us are currently studying is defects in the mechanisms that curtail inflammation after the body clears an infection.

While inflammation mostly plays out at a cellular level in the body, it is far from a simple mechanism that happens in isolation. Stress, diet and nutrition, as well as genetic and environmental factors, have all been shown to regulate inflammation in some way.

There is still a lot to be learned about what leads to harmful forms of inflammation, but a healthy diet and avoiding stress can go a long way toward helping maintain the delicate balance between a strong immune response and harmful chronic inflammation.

Prakash Nagarkatti, PhD, and Mitzi Nagarkatti, PhD, are Professors of Pathology, Microbiology and Immunology at the University of South Carolina. They receive funding from the National Science Foundation and the National Institutes of Health.

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

DEA Plans Further Cuts in Rx Opioid Supply

By Pat Anson, PNN Editor

For the seventh consecutive year, the U.S. Drug Enforcement Administration is planning to cut the supply of prescription opioids, reducing them in 2023 to levels not seen in nearly two decades.

DEA sets production quotas for opioids and other controlled substances annually, after consulting with the CDC, FDA and individual states about their projected medical and research needs. Based on that input, the DEA is lowering the supply of Schedule II opioids such as oxycodone and hydrocodone by about 5 percent next year.

“FDA predicts that levels of medical need for schedule II opioids in the United States in calendar year 2023 will decline on average 5.3 percent from calendar year 2022 levels. These declines are expected to occur across a variety of schedule II opioids including fentanyl, hydrocodone, hydromorphone, oxycodone, and oxymorphone,” the DEA said in a notice published in the Federal Register.   

The production cut in Schedule II opioids is not as steep as in prior years, but continues a trend that began a decade ago. Since their peak in 2013, production quotas have fallen by 65% for oxycodone and 73% for hydrocodone, the two most widely prescribed opioids.

OXYCODONE PRODUCTION QUOTAS (KILOGRAMS)

SOURCE: DEA

The primary goal of the DEA in lowering opioid production is to reduce the risk of diversion, abuse and overdose, but it’s hard to find any evidence the policy is working. Prescription opioid use has fallen by 48% in the last five years, but opioid overdose deaths have climbed to record levels, fueled primarily by street drugs made with illicit fentanyl, a synthetic opioid 50 to 100 times stronger than morphine.

Although DEA is arresting and prosecuting illicit fentanyl dealers, it also continues to actively target doctors who prescribe high doses of opioids. This month it suspended the DEA license of a California doctor for unknown reasons, which led to the death of a chronic pain patient and his wife in a double suicide.

“It’s the end of the road for me with doctors,” Danny Elliott posted on Twitter a few days before his death. Elliott had lived with severe headaches for over two decades and was despondent that he was out of pain medication and unable to find a new doctor.

Low Risk of Diversion    

DEA is required under federal law to estimate the amount of prescription opioids that will be diverted through loss or theft, and then subtract it from the annual production quota. But those estimates reveal just how small the opioid diversion problem actually is.

Using information gathered from prescription drug monitoring programs (PDMPs), pharmacies, hospitals and others in the drug supply chain, DEA estimates that less than one percent of oxycodone (0.3%) and hydrocodone (0.42%) will be diverted for use by someone they were not intended for.

The DEA’s 2023 production quotas are also based on an old recommendation from the CDC that prescribers should “avoid increasing dosages of opioids beyond 90 MME for patients with chronic pain.”  CDC recently revised its opioid guideline to remove the 90 MME dosage threshold. The new guideline is more flexible and encourages doctors to make treatment decisions based on the individual needs of the each pain patient and not on any hard limits.

The DEA is accepting public comments on its production quotas until Thursday, November 17. The public response so far has been muted – only 47 comments as of this writing -- likely because the quotas have received little publicity from the media or the DEA itself.

Most of the comments that have been received are critical of DEA plans to reduce the supply of amphetamines and other stimulants used in treating attention deficit hyperactivity disorder (ADHD).  Some of those drugs are already in short supply, but DEA said it has “grown increasingly concerned” that ADHD medications are being diverted and abused by young adults.

To leave your comment on the DEA’s 2023 production quotas, click here.

People With Long Covid Face Barriers to Getting Disability

By Betsy Ladyzhets, Kaiser Health News

When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of work for two years and put her family at risk for eviction.

Taveras, a mother of two in Brooklyn, New York, said her bout with long covid has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.

“We are in the midst of possibly losing our apartment because we’re behind on rent,” said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.

Like many others with long covid, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, insufficient legal support, and a lack of clear guidance on how to prove they are disabled — compounded by the challenges of a medical system that does not have a uniform process for diagnosing long covid, according to health experts and disability attorneys.

The Biden administration promised support to people with long covid, but patient advocates say many are struggling to get government help.

The Centers for Disease Control and Prevention defines long covid broadly, as a “range of ongoing health problems” that can last “weeks, months, or longer.” This description includes people, like Taveras, who cannot work, as well as people with less severe symptoms, such as a long-term loss of smell.

The Social Security Administration has identified about 40,000 disability claims that “include indication of a covid infection at some point,” spokesperson Nicole Tiggemann said. How many people with long covid are among the more than 1 million disability claims awaiting processing by Social Security is unknown.

In recent months, about 5% of new disability claims filed by Allsup, an Illinois-based firm that helps people apply for Social Security, involved people dealing with covid, said T.J. Geist, a director at the firm. Other firms report similar figures.

The long waits for disability assistance often end in denial, in part because long covid patients don’t have the substantial medical evidence that federal officials require, Geist said. There is no standard process for diagnosing long covid. Similarly, Social Security “has yet to give specific guidance on how to evaluate covid claims” for the government officials who review applications, he said.

A recent report from the Brookings Institution estimates that 2 million to 4 million people are out of work because of long covid. A study published in September by the National Bureau of Economic Research puts the number at 500,000.

Advocates suggest that many people with long covid have yet to recognize their need for government benefits and could start applying soon.

“I did not understand that I was disabled for four years because my ability would fluctuate so much,” said Alison Sbrana, a patient-advocate with the long covid support group Body Politic. She has a chronic disease whose symptoms are similar to long covid’s in many cases and has received Social Security disability payments for several years.

“If you apply my timeline to people with long covid, even people who got sick in early 2020, we’re not going to know the full extent of their ability to work or not until 2024,” she said.

Difficult Application Process

In July 2021, the Department of Health and Human Services formally recognized long covid as a disability. Expanding on the recognition, the department and the White House published a report in August 2022 that summarizes the “services and supports” available for people with long covid and others who have experienced long-term impacts from the pandemic.

But accessing support is not as simple as White House announcements may suggest. First, the July 2021 guidance recognized long covid under the Americans with Disabilities Act but didn’t extend to the Social Security Administration, which runs benefit programs.

Under the ADA, long covid patients who can still work may ask their employers for accommodations, such as a space to rest or a more flexible schedule, said Juliana Reno, a New York lawyer who specializes in employee benefits. Social Security, however, has more stringent standards: To receive disability insurance, people must prove their long covid symptoms are so debilitating that they cannot work.

“The application process is very demanding, very confusing for patients,” Sbrana said. “It also entirely depends on you having this substantial breadcrumb trail of medical evidence.”

Most applications are denied in the first round, according to Sbrana and other advocates. Patients typically appeal the decision, often leading to a second denial. At that point, they can request a court hearing. The entire process can take a year or more and usually requires legal assistance.

The pandemic extended these wait times, as Social Security offices closed and did not quickly shift to remote operations. Moreover, common symptoms such as brain fog can make filling out online applications or spending hours on the phone with officials difficult.

Long covid patients who were hospitalized with severe symptoms can submit paperwork from those hospital stays and are more likely to receive benefits, Geist said. But for the people who had mild cases initially, or who have “invisible-type symptoms” like brain fog and fatigue, Geist said, documentation is more difficult. Finding a doctor who understands the condition and can sign off on symptoms may take months.

Amanda Martin, a long covid patient and advocate, is one of those lost workers. Martin got covid in April 2020 while working as a subcontractor for the U.S. Navy and lost that job when they were unable to recover quickly.

At first, unemployment benefits provided support, but Martin’s symptoms — including intense fatigue and brain fog — continued. More than two years after the initial infection, Martin is still “on bed rest 90% of the time,” they said. Martin receives food stamps and Medicaid but doesn’t have help paying for other essentials, such as gas. Their application for federal disability benefits has been denied twice.

“I am currently a year into the [application] process; I have eight to 11 months remaining,” Martin said. “I have $50 in my savings account.”

Many people with long covid don’t have the financial resources to hire a lawyer — or access to a doctor who can help with their documentation, which makes the situation even tougher.

Patient advocacy organizations are pushing for a more efficient application process, specific guidance for officials who evaluate long covid cases, and faster eligibility for Medicare coverage after a disability application is approved. (The typical wait is two years.)

The organizations also serve as support groups for people with long covid, sharing resources and providing reassurance that they aren’t alone. Some organizations, such as the nonprofit Blooming Magnolia, even collect funds for direct distribution to people with long covid. But patients say these efforts don’t come close to the scale of funding needed.

Taveras, the Brooklyn mom, said she knows many other people who are grappling with similar issues. “We’re trying to get support from the government, and we’re not getting it,” she said. Taveras set up a GoFundMe page to request support for her family.

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

DEA Suspension of Doctor’s License Leads to Double Suicide

By Pat Anson, PNN Editor

Another chronic pain patient, along with his wife, has fallen victim to the Drug Enforcement Administration’s ongoing war against doctors who prescribe opioid medication.  

61-year-old Danny Elliott and his 59-year-old wife Gretchen were found dead in their Georgia home Monday. Police are calling it a double suicide.

Family and friends say Elliott – who lived with severe intractable pain for over two decades -- was distraught over the suspension of his doctor’s DEA license to prescribe opioids and other controlled substances. Dr. David Bockoff, a longtime pain management specialist in Beverly Hills, California, was notified about the suspension by a Department of Justice attorney last week.

“OMG. I called for my phone appt on Tuesday, apparently just a couple of hours after they took his license to prescribe. Because I was due for my next Rx’s, I’m now totally out,” Elliott posted on Twitter days before his death.

“It’s the end of the road for me with doctors. Not sure what happens now but it’s going to be brutal.”

No reason was given for the suspension, according to Bockoff. The DEA confirmed to PNN that Bockoff’s license to prescribe was suspended, but declined to comment further because the case is under administrative review.

Danny and Gretchen Elliott

“Their blood is on the DEA’s hands,” Bockoff said about the deaths of the Elliotts.

Some of Bockoff’s patients, including Elliott, traveled thousands of miles from out of state to see him because they were unable to find doctors locally who were willing to treat their pain. Bockoff can still practice medicine in California, but without an active DEA license he cannot prescribe opioids – which are essential, life-giving medications to patients like Elliott.

“I talked to my sister on Sunday,” said Eric Welde, Gretchen’s brother. “They were very distraught because they heard that Doctor Bockoff was not going to be able to grant them another prescription because the DEA had gone after him and said he couldn’t prescribe anymore, otherwise he was going to jail or something. That hit them very hard like a ton of bricks.”

Welde says his brother-in-law suffered from severe chronic headaches after he was electrocuted in a freak accident 22 years ago. A former pharmaceutical rep, Elliott was unable to work and was dependent on opioids to have any quality of life.  In the days before his death, Welde says Elliott was so desperate for pain relief that he tried unsuccessfully to buy drugs on the black market.  

“I’m angry at the DEA. And I’m angry at the whole medical system. Because he was clearly in pain. He was not a junkie,” Welde told PNN. “There’s this whole stigmatism towards pain management that you should just be able to get over it. It’s like telling a diabetic that you don’t need insulin anymore. And it’s brutally wrong.   

“But it’s perfectly acceptable to bring thousands of pounds of illegal fentanyl over and sell that on the black market. But this is a more worthwhile cause for the DEA, which just absolutely floors me.”

Bockoff Patients ‘Among the Sickest’

“This unwarranted harassment of long-established pain doctor David Bockoff is almost beyond belief,” says Kristen Ogden, whose husband Louis is a patient of Bockoff’s. The Ogdens live in Virginia and traveled monthly to California to have Louis’ prescriptions written and filled. 

“These patients, including my husband Louis, are among the sickest people there are and yet they have been able to achieve and maintain a good quality of life with Dr. Bockoff's care and the pain medications he prescribed,” Ogden said. “Now Danny Elliott, a man Louis and I were privileged to call our friend, has ended his life because he could no longer endure such horrific pain and his sweet, caring wife Gretchen apparently chose not to live on without him. Who can explain why it was okay to take away this man's medication?” 

“Just sick over Danny and Gretchen. I'm a Bockoff patient as well, all of my meds were due to fill the day his DEA registration was suspended,” says Anne Fuqua, a disabled nurse in Alabama who lives with dystonia and arachnoiditis, two painful conditions that cannot be cured.   

Fuqua and Louis Ogden are both former patients of Dr. Forest Tennant, whose office and home in California were raided by the DEA in 2017.  A DEA search warrant alleged that Tennant ran a drug trafficking organization because many of his patients came from out-of-state and were on high doses of opioids. No criminal charges were ever filed against Tennant, who retired from clinical practice a few months after the raid. 

“I’m alive today because Dr. Tennant and later Dr. Bockoff chose to put themselves on the line for high-dose patients like me,” says Fuqua.  

It cannot be overstated how difficult it is for chronically ill patients like Fuqua to find new doctors. Many pain management doctors have stopped taking new patients or retired, fearing they could be targeted by DEA or other law enforcement agencies for prescribing opioids. 

For some patients, the pain and anxiety become overwhelming. Jennifer Adams, a 41-year-old Montana woman and former patient of Tennant, ended her life in 2018. Friends say Adams’ anxiety about losing her pain medication “was eating her alive.”

‘Not Helpful to Patients’ 

Dr. Bockoff has practiced medicine in California for 53 years and there is no record of him facing any disciplinary action or complaints filed with the state medical board. His office was searched by DEA agents about a year ago and patient records were taken at that time.

Bockoff says there was no warning about his suspension or the reasons for it. 

“You’d have to ask them what their motivation is. I don’t know. But I would say it certainly affects patients. Any patient who has chronic intractable pain is adversely affected by this action,” Bockoff told PNN. “It’s quite scary to think that a person in pain all of a sudden is unable to get their needed medication.” 

Bockoff says the DEA and DOJ agents who visited his office last week left behind a list of emergency rooms in the Los Angeles area, saying they didn’t want any of his patients to go into withdrawal. Such a list would be of no use to out-of-state patients and of little use to those locally. Many patients resist going to emergency rooms because they fear their pain won’t be treated or they’ll be viewed as drug seekers. 

“I’m not sure that’s helpful to my patients,” Bockoff said.       

Legal experts say the DEA has the power to suspend a doctor’s license in “emergency” situations for “imminent danger to the public health or safety.” A doctor then has 30 days to appeal the suspension to an administrative law judge, a process that can take months or years to resolve – too long for patients who have a limited supply of medication. 

While the DEA has no authority to practice medicine or regulate it, the effects of its decisions are far-reaching on both doctors and patients.  

“They’re certainly making judgements on the practice of medicine and they’re not qualified to do so,” said Michael Barnes, an attorney and chair of the Center for U.S. Policy, a non-profit that seeks to improve healthcare and drug policy. “The DEA is a one trick pony. It knows how to raid. It doesn’t regulate and so it employs it’s war on drug tactics against prescribers, including those who have no criminal intent.” 

Ironically, the suspension of Bockoff’s license comes at a time when opioid hysteria appears to be receding, as more people become aware that street drugs are responsible for the vast majority of overdoses.

This month the CDC revised its controversial opioid guideline, giving doctors more flexibility in using their own judgement to prescribe opioids. In June, the U.S. Supreme Court ruled unanimously in favor of two doctors appealing their convictions for “overprescribing” opioids, saying doctors can prescribe opioids outside the usual standard of medical care, as long as they act in good faith.

The California Medical Board is also modifying its hard stance on opioid prescribing, which resulted in hundreds of threats of disciplinary action against doctors who prescribed high doses or had patients who overdosed. 

None of these efforts, however, have reined in the DEA or prevented tragedies like the suicides of Danny and Gretchen Elliott.

Restoring Blood Flow Reduces Pain in Patients with Peripheral Artery Disease

By Pat Anson, PNN Editor

Restoring blood flow to the legs significantly reduces pain and improves quality of life for people with peripheral artery disease (PAD), according to new research presented this week at the American Heart Association’s Scientific Sessions in Chicago.

Over 200 million people worldwide suffer from PAD -- a narrowing of peripheral arteries throughout the body that can cause severe leg pain, cramping and fatigue after a short walk or even just climbing a flight of stairs. In one out of ten people with PAD, the lack of blood flow can lead to chronic limb-threatening ischemia (CLTI), where people experience pain even when resting. Left untreated, tissue damage in the leg may result in amputation.

To restore blood flow, a common treatment for PAD is leg bypass surgery, in which a passage around the blocked arteries is created by using another vein from the leg of a patient. A less invasive approach is angioplasty, in which a balloon-tipped catheter is inserted into the blocked artery to widen it. A stent is then often placed to keep the artery open.

Few studies have compared the effectiveness of bypass surgery to angioplasty and stenting, which are known as “endovascular” procedures.

“The large body of high-quality evidence that guides treatment of heart disease and stroke does not exist for PAD, and until now, there has been almost no data to inform the care of CLTI patients,” says lead author Matthew Menard, MD, an associate professor of surgery at Harvard Medical School, and co-director of endovascular surgery at Brigham and Women’s Hospital.

In the first large-scale randomized controlled study of its kind, Menard and his colleagues enrolled 1,830 people with severe PAD at 150 centers in the U.S., Canada, Italy, Finland and New Zealand. Participants were surveyed at the beginning of the study about their quality of life and at several follow-up visits for 4 years after their surgery or procedure. The surveys asked about pain, PAD symptoms and severity, physical activity and mental health.

Pain levels were high and quality-of-life scores were low at the beginning of the study, reflecting the poor health and well-being of many patients with CLTI. But after surgery or an endovascular procedure, pain scores decreased significantly and quality-of-life scores improved for all participants.

“Improvement in health-related quality-of-life measures regardless of the type of procedure is very encouraging and highlights the importance of timely restoration of blood flow to the leg and foot,” said Menard.

Menard noted there were some differences initially between the two study groups favoring endovascular procedures, possibly reflecting the longer recovery time for a surgical bypass. But the differences were not “clinically meaningful” and leveled out over time.

“The quality-of-life data are a nice complement to the clinical results and suggest that both revascularization strategies may effectively improve a patient’s quality of life. So, while there is still much work to be done, and quality-of-life measures have not always been the focus in past PAD research, this is an important step forward,” he said.

PAD patients who don’t have bypass surgery or endovascular procedures may want to continue walking despite the pain and discomfort, according to a recent study. Researchers at Northwestern University’s Feinberg School of Medicine found that elderly PAD patients who exercised 5 days a week walked at a faster pace and performed better on physical performance tests than non-walkers.

Between 8 and 10 million people in the United States have PAD. The condition disproportionately affects African-Americans, Native Americans and those with low socioeconomic status.

Why Cannabis Holds Promise for Pain Management

By Benjamin Land, University of Washington Center for Cannabis Research

Drug overdose deaths from opioids continue to rise in the U.S. as a result of both the misuse of prescription opioids and the illicit drug market.

But an interesting trend has developed: Opioid emergency room visits drop by nearly 8% and opioid prescriptions are modestly lower in states where marijuana is legalized.

Marijuana is produced by the cannabis plant, which is native to Asia but is now grown throughout the world. Individuals use marijuana for both its psychoactive, euphoria-inducing properties and its ability to relieve pain.

Chemicals produced by the cannabis plant are commonly known as cannabinoids. The two primary cannabinoids that occur naturally in the cannabis plant are THC – the psychoactive compound in marijuana – and CBD, which does not cause the sensation of being high.

Many marijuana users say they take it to treat pain, suggesting that readily available cannabinoids could potentially be used to offset the use of opioids such as morphine and oxycodone that are commonly used in pain treatment. A safer, natural alternative to opioid painkillers would be an important step toward addressing the ongoing opioid epidemic.

Intriguingly however, research suggests that cannabis use could also lessen the need for opioids directly by interacting with the body’s own natural opioid system to produce similar pain-relief effects.

I am a neuropharmacology scientist who studies both opioids and cannabinoids as they relate to pain treatment and substance abuse. My research focuses on the development of drug compounds that can provide chronic pain relief without the potential for overuse and without the tapering off of effectiveness that often accompanies traditional pain medications.

How Opioids Work

Our bodies have their own built-in opioid system that can aid in managing pain. These opioids, such as endorphins, are chemicals that are released when the body experiences stress such as strenuous exercise, as well as in response to pleasurable activities like eating a good meal. But it turns out that humans are not the only organisms that can make opioids.

In the 1800s, scientists discovered that the opioid morphine – isolated from opium poppy – was highly effective at relieving pain. In the last 150 years, scientists have developed additional synthetic opioids like hydrocodone and dihydrocodeine that also provide pain relief.

Other opioids like heroin and oxycodone are very similar to morphine, but with small differences that influence how quickly they act on the brain. Fentanyl has an even more unique chemical makeup. It is the most powerful opioid and is the culprit behind the current surge in drug overdoses and deaths, including among young people.

Opioids, whether naturally produced or synthetic, produce pain relief by binding to specific receptors in the body, which are proteins that act like a lock that can only be opened by an opioid key.

One such receptor, known as the mu-opioid receptor, is found on pain-transmitting nerve cells along the spinal cord. When activated, mu-receptors tamp down the cell’s ability to relay pain information. Thus, when these opioids are circulating in the body and they reach their receptor, stimuli that would normally cause pain are not transmitted to the brain.

These same receptors are also found in the brain. When opioids find their receptor, the brain releases dopamine – the so-called “feel-good” chemical – which has its own receptors. This is in part why opioids can be highly addicting. Research suggests that these receptors drive the brain’s reward system and promote further drug-seeking. For people who are prescribed opiates, this creates the potential for abuse.

Opioid drugs, which include heroin, oxycodone and fentanyl, are highly addictive.

Opioid receptors are dynamically regulated, meaning that as they get exposed to more and more opioids, the body adapts quickly by deactivating the receptor. In other words, the body needs more and more of that opioid to get pain relief and to produce the feel-good response. This process is known as tolerance. The drive to seek more and more reward paired with an ever-increasing tolerance is what leads to the potential for overdose, which is why opioids are generally not long-term solutions for pain.

How THC and CBD Relieve Pain

Both THC and CBD have been shown in numerous studies to lessen pain, though – importantly – they differ in which receptors they bind to in order to produce these effects.

THC binds to cannabinoid receptors that are located throughout the central nervous system, producing a variety of responses. One of those responses is the high associated with cannabis use, and another is pain relief. Additionally, THC is believed to reduce inflammation in a manner similar to anti-inflammatory drugs like ibuprofen.

In contrast, CBD appears to bind to several distinct receptors, and many of these receptors can play a role in pain reduction. Importantly, this occurs without the high that occurs with THC.

Because they target different receptors, THC and CBD may be more effective working in concert rather than alone, but more studies in animal models and humans are needed.

Cannabinoids may also be helpful for other conditions as well. Many studies have demonstrated that cannabinoid drugs approved for medical use are effective for pain and other symptoms like spasticity, nausea and appetite loss.

Along with the pairing of THC and CBD, researchers are beginning to explore the use of those two cannabinoids together with existing opioids for pain management. This research is being done in both animal models and humans.

These studies are designed to understand both the benefits – pain relief – and risks – primarily addiction potential – of co-treatment with cannabinoids and opioids. The hope would be that THC or CBD may lower the amount of opioid necessary for powerful pain relief without increasing addiction risk.

For example, one study tested the combination of smoked cannabis and oxycontin for pain relief and reward. It found that co-treatment enhanced pain relief but also increased the pleasure of the drugs. This, as well as a limited number of other studies, suggests there may not be a net benefit.

However, many more studies of this type will be necessary to understand if cannabinoids and opioids can be safely used together for pain. Still, using cannabinoids as a substitution for opioids remains a promising pain treatment strategy.

The next decade of research will likely bring important new insights to the therapeutic potential of cannabinoids for chronic pain management. And as marijuana legalization continues to spread across the U.S., its use in medicine will undoubtedly grow exponentially.

Benjamin Land, PhD is a Research Associate Professor of Pharmacology at the University of Washington School of Medicine and the UW Center for Cannabis Research. Land receives funding from the National Institutes of Health for cannabinoid research, and has received cannabinoid related funding from the University of Washington Addiction and Drug Abuse Institute and SCAN Design Foundation.

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

A Weird Trick to Get Doctors to Listen to You

By Crystal Lindell, PNN Columnist

There’s a lot of advice out there on how to get a doctor to take you seriously. Most of it is wrong.

Lucky for you, I’ve been in pain for a decade! Through trial and lots of errors, I’ve learned a few things and I’m happy to share them with you.  

First though, a little background on why you might need this information. It’s basically a rite of passage for chronically ill patients to lose their faith in doctors. We go in expecting Dr. Gregory House – the brilliant and grumpy lead character on the TV show House -- to solve the puzzle of our illness. Instead, we’re more likely to be met by a doctor with all of House’s hostility, but none of his determination.  

Doctors are notorious for downplaying symptoms, ignoring concerns, and blaming everything on the patient’s weight/smoking habit/stress/drug-seeking behavior.

They also tend to have a violent aversion to patients who suggest their own diagnoses. Their delicate doctor egos override any rational reaction and, more often than not, patients with chronic illness leave their appointments with no answers.

I used to think this only happened to women, but after attending multiple appointments with men in my family, I have come to realize that it’s just an across-the-board thing. My theory is that many of them became doctors so they can be seen as the smartest person in the room. And they hate it when patients treat them as equals, instead of the superior beings they believe themselves to be.

The problem is, a lot of patients tend to be really good at figuring out what’s wrong with their own bodies. They’re highly motivated to find answers, and they have more access to medical research tools then ever before in human history. Doctors love to mock Dr. Google, but that’s kind of like mocking libraries. Finding information online doesn’t automatically make it less valuable than finding it in a book.

Which brings us to the problem: Once we, as patients, figure out what might be wrong, how do we bring it up to our doctor without offending them?  

In short, it’s all about framing. You need to suggest that someone else is making you ask them about whatever it is you want to bring up. Let me share an example:

Do NOT say: “I think I have Ehlers-Danlos Syndrome.”

Instead, say: “My best friend wanted me to ask you about something. I don’t even think it’s a thing, but she thinks I might have something called EDS. Ehlers-Danlos syndrome, I think? I don’t know. It’s probably rare. But have you heard of it? Do you think I might have it?”

Here’s another example:

Do NOT say: “I think I have ADHD.”

Instead, say: “So my wife said I had to ask you about something. I don’t know if she’s right, but if I don’t bring it up with you, she’ll be really mad at me. She thinks I might have something called attention deficit disorder. And she said you might be able to help.”

Yes, I know, it’s annoying and demeaning. And you’re right, patients shouldn’t have to navigate medical conversations like this. They shouldn’t need to fake ignorance to get a doctor to help them.

But this column isn’t about overturning medical power structures. It’s about getting immediate results in what are often life-threatening situations. And I can assure you, this method works. I speak from experience. It is literally how I got my EDS diagnosis after dealing with chronic pain for years. I have shared this tip with others who have also used it successfully.

It works on every type of doctor, too. This is what you say to them:

To ER doctors: “My husband made me come here to get this chest pain checked out.”

To primary care physicians: “My roommate said I had to ask you about having my thyroid levels checked.”

To pain specialists: “My brother thinks I have rheumatoid arthritis and he wanted me to ask you about it.”

To psychiatrists: “My aunt said I should ask you about anxiety medications.”

This will not only help in getting them to take your symptoms seriously, it will also work on convincing them to order specific tests, offer specific medications, and consider a specific diagnosis.

This approach shifts the focus onto a third party, which helps doctors lower their defenses. If they think medical suggestions from patients are inane, you’re just feigning agreement with them. It effectively puts you on the same side as the doctor ⁠— the two of you against your loved one. Which is fine, because your loved one isn’t relying on them for medical care, so they can take the heat. And when the doctor feels like they’re on your side, they’re more likely to want to help.

This approach also means that the doctor knows you are likely to tell a third party what transpired during the appointment, which means they’ll be held to a higher level of accountability. That alone will often have a big impact on how they treat you.

Yes, it is wrong that patients have to use passive aggressive techniques just to get an MRI. But, as my mom always says, it’s better to be wrong than to be dead right. Sure you could insist on being more direct with your doctor, but if that doesn’t work — and the doctor dismisses your symptoms when they should be treating them — the choice could literally leave you dead. You’d be right, but you’d be dead right.

Hopefully, one day, patients won’t have to navigate their doctor’s fragile egos to get the care that they need. Until that day though, this will help. So go forth and be well. And if you can’t be well, at least be well prepared.

Crystal Lindell is a freelance writer who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome. She and her fiancé have 3 cats: Princess Dee, Basil, and Goose. She enjoys the Marvel Cinematic Universe, Taylor Swift Easter eggs, and playing the daily word game Semantle. 

CDC Revises Opioid Guideline, But Can It Undo the Damage to Pain Care?

By Pat Anson, PNN Editor

The Centers for Disease Control and Prevention has released a long-awaited final update to its controversial opioid prescribing guideline, expanding the recommendations to include patients suffering from short and long-term pain, while at the same time giving doctors more flexibility when prescribing opioids.

Although voluntary and only intended for primary care providers treating chronic pain, the original 2016 guideline was adopted as a mandatory opioid policy by many states, insurers, medical societies and even law enforcement agencies, resulting in millions of patients being reduced to lower ineffective doses or taken off opioids and forced into withdrawal. The newly revised guideline is intended to end the “one-size-fits-all” approach to pain care and a public health experiment gone wrong.

“Fundamentally, the framing of the guideline is that pain happens in many different ways, in different intensities, and patients respond to different treatments in different ways. And so it is paramount that clinical decisions are based on the individual needs of the patient,” said Christopher Jones, PharmD, Acting Director of CDC’s National Center for Injury Prevention and Control and a guideline co-author.

“In some cases opioids, even opioids at high doses, are the right thing to do for the patient. It’s more about working with the patient to set expectations and goals and look at the full range of treatments. And if opioids are the right thing or opioids plus non-pharmacological treatments, or opioids plus NSAIDs, if that’s the right thing and the patient is doing well and meeting their goals, this guideline supports that. It doesn’t dictate any particular type of care that any particular patient has to receive.”

Benefits vs Risks

To be clear, the revised guideline still takes a dim view of opioid pain medication and its potential to result in addiction and overdose. Doctors are advised to “maximize” the use of non-opioid drugs and non-pharmacological treatments, and should “only consider initiating opioid therapy if expected benefits for pain and function are anticipated to outweigh risks to the patient.” When opioids are prescribed, it should be at the “lowest possible effective dose.”   

Other notable changes in the guideline:

• A more cautious, slower approach to opioid tapering that strongly encourages patient buy-in before doses are reduced

• Drug testing only recommended when “appropriate.” Doctors should first “consider the benefits and risks of toxicology tests”

• Instead of “extreme” caution about taking opioids with benzodiazepines and other anti-anxiety drugs, “particular” caution is recommended

• Patients should not be dismissed for failing a drug test or because of information found in prescription drug databases (PDMPs)

Importantly, the revised guideline also removes a recommendation in the 2016 guideline that daily opioid doses not exceed 90 MME (morphine milligram equivalents), which was widely seen as a hard limit. It is replaced with cautionary language about doses above 50 MME being “more likely to yield diminishing returns.”  

“There are tweaks, but I think they are tweaks that are meaningful. That doesn’t mean its not still built on a rotten core,” says Kate Nicholson, Executive Director of the National Pain Advocacy Center (NPAC), who belonged to an independent advisory panel that advised the CDC to drop all references to MME.

Nicholson is concerned the 50 MME threshold – which is mentioned two dozen times in the revised guideline – will be misapplied as the new hard limit.

“They still overly focus on MME’s,” she told PNN. “They do qualify it whenever they mention it, but it’s still there, it’s there a lot, and it’s aligned strongly with risk. My concerns are misapplication, even though they say repeatedly ‘Do not apply this as a strict threshold.’”

Nicholson is also concerned about the guideline’s expansion beyond chronic pain (pain lasting three months or more) to include people with short-term acute pain from trauma or surgery, as well as “sub-acute” pain lasting one to three months.

“It’s good to cover all pain and not just single out chronic pain. So in theory I think it’s fine, but in practice, given that they acknowledge again and again the problems of the 2016 guideline. Usually, you check your safety features on the airplane before you expand the fleet. And they didn’t. They did it all at once,” she said. “I also have concerns that it’s a clinical practice guideline written mostly by non-clinicians and by people who are not experts in pain. And it’s now going to cover how all pain should be treated?”

For some patient advocates, no amount of revisions are acceptable. They want the CDC guideline revoked.

“False claims of one-size-fits-all dose thresholds are alive and well in this final draft. More than ever, I am convinced that the CDC must be restricted by law from issuing practice guidelines of this type,” says patient advocate Richard “Red” Lawhern. “It doubles down on lies and cherry-picked research intended to further suppress opioid prescribing at the expense of undertreating patients and driving clinicians out of pain management practice.”

Most of the mainstream media coverage of the revised guideline portrayed it as a weaker or softened version of the 2016 guideline. That is puzzling to Andrew Kolodny, MD, founder and president of the anti-opioid activist group Physicians for Responsible Opioid Prescribing (PROP), who believes the new guideline is “much stronger” than the original.

“Press coverage of the CDC opioid guideline is wacky,” Kolodny wrote on Twitter. “CDC issued a guideline much stronger than the 2016 version (high dose defined as 50 MME/day instead of 90) but press headlines say CDC softened guideline.”

Reversing the Damage

Many patient advocates believe it will be hard to unwind the damage caused by the 2016 guideline to patients, pain management practices, and the healthcare system in general.

“Many laws, regulations, and policies were implemented from the rigid application of the 2016 opioid dosage thresholds. I believe this means many physicians may remain reluctant to prescribe opioids when indicated for chronic pain, and patients may continue to find access to treatment a challenge,” said Dr. Lynn Webster, Senior Fellow at the Center for U.S. Policy and past president of the American Academy of Pain Medicine

“To reverse the damage, the CDC could take an active and vocal public role in publicizing the statements about the guideline not being a law, regulation or policy. The agency should make sure that governmental and enforcement entities know there’s a new CDC statement on these matters.”

Chris Jones said the CDC would monitor how the revised guideline is implemented by states, insurers and others to prevent further misapplication. But he was vague about how it would be done, saying it needs to be handled on a case-by-case basis and while recognizing that “states do what states do.” The CDC has no legal authority to enforce its recommendations.

 “As with any clinical practice guideline, the work doesn’t stop today. It really starts as we engage with the clinical community, as we engage with patient organizations with educational opportunities. Certainly engaging with insurers and others to say, ‘Here’s the latest evidence about the range of treatment options that can be effective,’” he told PNN. “But we’re still working through, from a policy perspective when we see misapplication, how to respond to that.”

Jones said he would be speaking next month to the National Conference of State Legislatures about the revised guideline and to reinforce the need for individualized patient care. He and the other guideline co-authors also published an op/od in The New England Journal of Medicine that cautions providers about misapplying the CDC’s recommendations.

Webster thinks the CDC’s efforts to combat addiction and overdoses should be refocused on illicit fentanyl and other street drugs, which are involved in the vast majority of drugs deaths. In 2021, nearly 108,000 Americans died from overdoses, a record number.

“I think it is important to remember that the goal of the guideline was to reduce the number of overdose deaths by reducing the opioid supply or amount prescribed. It hasn’t worked out that way,” Webster said. “Over the past decade, opioid prescribing has plummeted, but the number of overdoses has skyrocketed. The CDC should now focus on the cause of most opioid-related overdose deaths, which is to bring attention to the social and economic factors that create the demand for so many Americans to escape the pain of living.” 

Study Finds Harmful Effects of Chronic Pain Persist Throughout Life

By Pat Anson, PNN Editor

If you have chronic pain in middle age, chances are you will continue to have pain and poor overall health as you enter your senior years, according to a large new study in the UK that found pain has wide-ranging effects throughout life. Pain sufferers are significantly more likely to be unhappy, depressed and unemployed as they grow older.  

Researchers followed the health data and survey responses of over 12,000 people who were born in England, Scotland and Wales in March 1958. The study began in 2003, when most of the respondents were age 44, and continued until they turned 62 in 2021

The research findings, published in PLOS ONE, show that pain can persist for decades and may even be passed from one generation to the next.

“Tracking a birth cohort across their life-course we find chronic pain is highly persistent. It is associated with poor mental health outcomes later in life including depression, as well as leading to poorer general health and joblessness. We hope the study highlights the need for academics and policy makers to focus more attention on the problems of chronic pain,” wrote lead author Alex Bryson, PhD, a Research Fellow at University College London.

Bryson and his colleagues found that two-fifths of respondents reported suffering from chronic pain in their 40’s. Of those, 84% still reported “very severe” pain at age 50. Having chronic pain at 44 was also associated with poor mental health, lower life satisfaction, pessimism about the future, poor sleep and joblessness at age 55.

In the last year of their study, researchers found that having pain at midlife also raises the risk of a covid infection at age 62, a finding that supports previous studies showing that people in poor health are more susceptible to Covid-19.

The study pinpointed several factors that predict pain at a later age, including a father’s social and economic status. Respondents whose fathers were professionals, managers or administrators when they were born were significantly less likely to report chronic pain 44 years later.

The UK study reached many of the same conclusions as U.S. researchers, who have found that less-educated, working class Americans have higher rates of pain, social isolation, drug abuse, disability and suicide than those with college degrees. Efforts at treating physical pain, either with opioids or non-opioid therapies, have failed to turn the tide.  

“Our evidence on the persistence of pain across the life-course suggests efforts to counter it have not been wholly successful,” said Bryson. “We have shown that it is, in part, passed from one generation to the next, with those from lower social classes suffering most. Pain appears to be another source of inter-generational disadvantage, and one that is potentially as problematic as other aspects of social deprivation.”

FDA Warns Amazon and Walmart About Selling Misbranded Drugs

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration has issued another warning to consumers not to purchase or use dietary supplements marketed for pain relief under the brand names “Artri” or “Ortiga” due to potentially dangerous pharmaceutical ingredients. Use of the products has led to liver toxicity and at least one death, according to the agency.

The FDA issued its first first warning about the supplements in January and followed up with a second warning  in April. The latest warning includes Amazon, Walmart and another retailer that continued to sell the supplements, which are marketed with claims that they treat arthritis and osteoarthritis, restore cartilage, and stop joint deterioration.

In a warning letter sent to Amazon last week, the FDA said it had purchased Artri and Ortiga supplements through its website and had them delivered through the company’s delivery service.

Laboratory testing confirmed the supplements purchased through Amazon contained diclofenac, a non-steroidal anti-inflammatory drug (NSAID), and dexamethasone, a corticosteroid used to treat inflammatory conditions.

Neither drug is mentioned on product labels, which list ingredients such as glucosamine and turmeric. The FDA warned Amazon that introducing or delivering a misbranded drug is a violation of federal law.  

“Failure to adequately address this matter may result in legal action including, without limitation, seizure and/or injunction. Please submit a written response to this letter within fifteen working days from the date of receipt, explaining the specific steps you have taken to address any violations,” the FDA letter states.

Similar warning letters were sent to Walmart and Latin Foods Market, which had previously issued voluntary recalls for the supplements, but still continued to sell them.

It appears the Artri and Ortiga supplements have now been removed from the websites of all three companies. The supplements were being marketed primarily to Spanish-speaking consumers, with claims they are “highly effective in restoring cartilage” and “fights arthritis.”  

Diclofenac raises the risk of cardiovascular events, such as heart attack and stroke, as well as serious gastrointestinal bleeding and damage. When used long term or in high doses, dexamethasone and other corticosteroids can result in serious withdrawal symptoms if a consumer suddenly stops taking them. Both drugs can also interact with other medications.

The FDA encourages healthcare providers and patients to report side effects involving use of the products to its Adverse Event Reporting System. .