Lipofilling Improved Pain and Function in Patients with Finger Osteoarthritis

By Pat Anson, PNN Editor

People who suffer from painful arthritic fingers have few treatment options to choose from. They can wrap their hand in a splint, take anti-inflammatory drugs or get steroid injections into their finger joints – all of which provide only temporary relief. More invasive surgical treatments include joint fusions or reconstruction, which can impair hand motion and take weeks to recover from.

German researchers have found that a less invasive treatment commonly used in plastic surgery – injecting fat tissue from one part of the body into another -- can provide lasting improvements in pain and function for patients with finger osteoarthritis. The technique – called lipofilling – resulted in “highly significant clear improvement" with no complications in a small pilot study of 15 patients.     

"We believe that for our patients the reduction of pain represents the most striking and important result, which also has the most pronounced and highly significant effect," said co-author Max Meyer-Marcotty, MD, Clinic for Plastic, Reconstructive, and Aesthetic Surgery/Hand Surgery in Lüdenscheid, Germany.

"Even over a long-term follow-up, the transfer of fatty tissue to arthritic fingers joints appears to provide a safe and minimally invasive alternative to conventional surgery for patients with osteoarthritis.”

In the lipofilling procedure, Meyer-Marcotty and his colleagues used liposuction to take a small sample of each patient's fatty tissue from their upper thigh or hip area. The autologous fat was then injected into their arthritic finger joints. Patients wore a splint around the treated fingers and took pain relievers for a week. There were no infections or other complications reported.

The researchers followed outcomes in 25 finger joints for an average of 44 months after treatment, and found that pain scores fell from a median of 6 (on a 10-point scale) before treatment to just 0.5 points at follow-up. Grip strength of the treated fingers approximately doubled, while fist closure and hand function performing everyday tasks also improved.

“Even after a follow-up examination period of 44 months, the transfer of fatty tissue to arthritic finger joints has shown itself to be a minimally invasive, safe, and promising alternative to conventional surgical techniques aimed at alleviating arthritic complaints, and one that among other things entails a highly significant improvement in postsurgical pain levels,” researchers reported in the journal Plastic and Reconstructive Surgery. “Further long-term follow-up studies of even larger patient cohorts would be needed to further corroborate these initial positive findings.”

In recent years, lipofilling procedures have been increasingly used in plastic and reconstructive surgery, as well as stem cell therapy.

When injected into patients, mesenchymal stromal cells (MSCs) in fat tissue can regenerate damaged or diseased tissue, including cartilage in arthritic joints. A small 2019 study found that MSCs collected from a patient’s bone marrow can significantly reduce pain from knee osteoarthritis for up to a year.

Osteoarthritis is a progressive joint disorder caused by the inflammation of soft tissue, which leads to thinning of cartilage and joint damage in the knees, hips, fingers and spine.

"The chance to preserve the joint with a minimally invasive procedure is of particular interest in the early, albeit painful, phases of finger osteoarthritis," said Meyer-Marcotty. "Since the lipofilling procedure is nondestructive, conventional joint surgery can still be performed later, if needed."

Drug Addiction Is the Problem, Not Prescription Opioids

By Christine Kucera, Guest Columnist

The Centers for Disease Control and Prevention (CDC) is the leading national public health institute of the United States. The agency is responsible for protecting the public from health and safety threats. 

In my opinion, the CDC has no business writing clinical guidelines! Medical guidelines for healthcare/disease management, medication management, and clinical decision making should be developed, reviewed and approved by a diverse team of clinical subject area specialists and key stakeholders, including medical specialists, medical groups, advisory teams, advocates and patients. Not regulatory agencies!

The 2016 CDC opioid guideline, as currently written, has harmed and damaged millions of lives, and caused unspeakable suffering. In effect, the CDC sanctioned torture by failing to promptly address and correct the negative impact of its guideline on individual patient care, addiction and pain management treatment and resources.

The CDC has clearly overstepped its authority by creating a guideline meant to regulate the use of prescription opioids. Any regulatory measures which prevent patients from accessing prescription opioids as indicated for their health and well-being are unethical and should be reconsidered, if not totally withdrawn.

The CDC continues to propagate the false narrative that any patients requiring prescription opioids for any type of pain are or will become addicts. And it continues to claim — without any evidence — that if opioid prescriptions are limited in quantity, type, duration and dose, there will be a reduction in addiction, overdose and death. The facts indicate otherwise. Overdoses are at record high levels.

The True Causes of Addiction

Substance addiction exists because our government has failed to address its true causes, which include poor access to addiction treatment, unethical pain treatment, lack of quality care standards across medical institutions, and lack of legislative laws that protect patients from suffering needlessly. 

Addiction is caused by preventable and manageable health disparities, untreated and undertreated mental and physical suffering, genetic metabolic variability, lack of resources, lack of all-inclusive healthcare insurance, lack of provider managed pain care, lack of treatment centers, lack of access to appropriately prescribed medications, lack of drug monitoring systems, lack of access to mental health and pain care providers, lack of timely access to a comprehensive network of providers, and lack of individualized care. 

Maybe if the CDC actually focused on the above health and safety issues, we would have guidance on solving the real problems. The CDC has failed miserably to recognize that individual pain care is as unique as the patient who is suffering in pain. Every single person that has pain seeks relief.

Relief comes in many different forms, both healthy and unhealthy. These forms of relief may be self-directed and/or medically managed by clinical staff and providers, and includes exercise, yoga, rest, mobilization, heat/ice therapy, massage, mindfulness, acupuncture, Chinese herbal medicine, bio-feedback, diet, weight loss, surgeries, water therapy, bicycling, strength/weight training, martial arts, immunotherapy, TENS, anti-inflammatories, anti-seizure medication, muscle relaxants, antidepressants, biologicals, medical/recreational cannabis, CBD, kratom, prescription opioids, illicit/illegal drugs and alcohol — to name a few. 

Every Patient is Different

The journey each patient in pain takes is individual. The pain you've experienced and lived with is different from mine and everyone else’s.  

The terms “acute pain” and “chronic pain” are also misleading and are part of the false narrative. Pain is a symptom. Its management depends on its physical and/or mental cause, not how long it lasts. Pain is the body's way of sending up a red flag that something is not right.

Duration means nothing in the world of pain, as every minute of the day is different in type, in location and in intensity. Pain goes through cycles, and no person experiences pain the same way.  

Until the individuals who wrote this God awful, evil guideline experience pain that is unrelenting, agonizing, non-stop, 24/7 for their entire life, they should back off the false narrative, go back into their non-medical cave, and leave the medical decision making up to the actual physicians who are trained to manage pain with all the tools available and at any quantity required by a patient.  

What the CDC should be addressing are the sources of suffering, identifying at-risk individuals and providing a framework for implementing resources and systems of care that are fluid and adaptive to the unique circumstances of each individual.  

There are too many outstanding questions and issues which also continue to impact patients and providers. What are the FDA and DEA’s roles and responsibilities? How do their policies meet the objectives of the CDC guideline to reduce addiction, overdose and death? What impact do they have on medical providers treating patients in pain? 

Addiction is the public health issue requiring CDC input, not the utilization of prescription opioids for pain treatment. 

Christine Kucera is an intractable pain patient survivor of over 30 years. She lives with reactive psoriatic arthritis, spondylitis, polyarthritis, sacroiliitis, degenerative disc disease, dermatomyositis, mixed connective tissue disease, psoriasis, lupus, spinal radiculopathy, thoracic outlet syndrome, endometriosis stage IV, and other painful conditions.

Prior to becoming disabled, Christine was a healthcare research systems developer and analyst for federally funded CMS, AHRQ, and NIH grants and programs. 

High-Frequency Spinal Cord Stimulators Provide More Pain Relief

By Pat Anson, PNN Editor

Spinal cord stimulators are often considered the treatment of last resort for patients with intractable or severe chronic pain. The surgically implanted devices emit low levels of electricity that reduce pain signals, but have high failure rates and often have to be removed because they’re ineffective, cause infections or need new batteries.

Two new studies suggest there are ways to improve the success rate of spinal cord stimulators (SCS) through improved patient selection and the use of high-frequency devices.

Low-frequency SCS (50 Hz) was first approved by the Food and Drug Administration for intractable back and leg pain in 1989. Six years later, the FDA approved high-frequency devices (10,000 Hz), that deliver pulses of electrical stimulation that are shorter in duration, lower in amplitude and do not cause paresthesia, an irritating sensation of tingling or prickling.

In a retrospective study of 237 patients who received stimulators between 2004 and 2020, researchers at the University of California San Diego School of Medicine reported that high-frequency devices were more effective at reducing pain and opioid use than low-frequency ones.

The study findings, published in the journal Bioelectronic Medicine, also show that male patients benefit more than women from high-frequency neuromodulation.

"Our work was sparked by a growing literature that demonstrate sex specific immune pathways differentially contribute to chronic pain processes," said senior author Imanuel Lerman, MD, an associate professor of anesthesiology at UC San Diego Health. "The observed parameter-specific (high versus low frequency) sex-based differences in spinal cord stimulation efficacy and opiate use are definitely intriguing.”

It’s not clear why men benefit more than women, but researchers believe it may be due to the male hormone testosterone having a modulating effect on pain signals. The sex differences may also be due to males and females processing chronic pain differently.

"Clearly more work needs to be done to carefully characterize sex specific pain regulatory pathways that may prove responsive to specific types of neuromodulation and or pharmaceutical therapies," said Lerman.

Improved Patient Selection  

Although most patients are required to undergo psychological testing and a trial treatment before getting a SCS, failure rates for the devices remain high at around 25 to 30 percent. With about 50,000 stimulators implanted in the U.S. every year, that means thousands of patients are getting poor results.

To improve patient outcomes, researchers at Florida Atlantic University developed machine-learning algorithms to help predict which patients may benefit from SCS. Working with a cohort of 151 SCS patients, they evaluated 31 features or characteristics in each patient.  

Researchers found two distinct clusters of patients which differ significantly in age, duration of chronic pain, preoperative pain levels and pain catastrophizing scores. They used computers to fine-tune the results, identifying the 10 most influential features that contribute the most to a successful SCS implant.

Results of the study, published in the journal Neurosurgery, demonstrate for the first time the ability of machine-learning algorithms to predict long-term patient response to SCS placement. The next step is to validate the data in future patients to ensure that the algorithm is useful in real-world situations, not just computer models.

"Our study resulted in the development of a model to predict which patients would benefit from spinal cord stimulation," said lead author Julie Pilitsis, MD, dean and vice president of medical affairs at Florida Atlantic University's Schmidt College of Medicine.  "After we validate this work, our hope is that this machine-learning model can inform a clinical decision support tool to help physicians better choose which patients may be most appropriate."

SCS is no longer limited to patients with intractable back and neck pain. Last year the FDA expanded the use of SCS to include lower limb pain from diabetic neuropathy.  Stimulators are also being used on patients with Complex Regional Pain Syndrome (CRPS).

A decision to get a SCS shouldn’t be taken lightly. A 2018 study by a team of investigative journalists found that stimulators have some of the worst safety records of medical devices tracked by the FDA. A 2020 FDA review of adverse events involving SCS found that nearly a third were reports of unsatisfactory pain relief. The review also identified nearly 500 deaths linked to the devices, along with nearly 78,000 injuries and 30,000 device malfunctions.

Steroids Raise Risk of Hospitalization for Sickle Cell Patients

By Pat Anson, PNN Editor

People with sickle cell disease who are prescribed a corticosteroid – an anti-inflammatory medicine often used to treat pain – are significantly more likely to be hospitalized with a severe pain episode, according to a new study.

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

“Individuals living with SCD often suffer crippling episodes of pain, which can greatly impair their quality of life,” said Ondine Walter, MD, of Toulouse University Hospital in France, lead author of the study published in the journal Blood.

Walter and her colleagues looked at medical data for over 5,100 patients with SCD in the French National Health Insurance Database between 2010 and 2018. Patients had to have at least one hospitalization for VOE to be included, and their corticosteroid exposure was identified using outpatient prescribing records.

Researchers found that patients exposed to a corticosteroid in the month prior to a pain flare were nearly four times more likely to be hospitalized for VOE than those who did not get a steroid. The median time between filling a prescription for a corticosteroid and hospitalization was just five days.

Nearly half the patients (46%) were prescribed a corticosteroid during the study period, an indication of just how common steroid treatment is for SCD. Walter said the results demonstrate the need for better education of clinicians and patients about the potential risks of corticosteroids, especially when there isn’t a clear reason to use them.

“Based on our data, corticosteroids are commonly prescribed for conditions unrelated to their underlying SCD. Vaso-occlusive events and related hospitalization appear to follow corticosteroid prescription fairly quickly. This evidence suggests corticosteroids may be contributing to the events and should be avoided as much as possible in these patients,” Walter said. “Corticosteroids are mostly easy to avoid, and in circumstances when they are necessary, it’s important to start them in collaboration with an SCD expert and to take all appropriate precautionary measures to administer them safely.”

The American Society of Hematology’s Clinical Practice Guideline recommends against using corticosteroids for acute pain in SCD patients.

The French research team also found that SCD patients taking the drug hydroxyurea had about half the risk of being hospitalized for VOE than those not taking it, which may indicate the drug has a protective effect. Hydroxyurea is often prescribed to SCD patients to reduce the number of pain flares and the need for blood transfusions. Men benefited from hydroxyurea more than women and children.

It’s not uncommon for someone with SCD to visit an emergency room a few times each year due to acute pain or complications such as anemia. Many are disappointed by the experience. A 2021 survey of SCD patients in the U.S. found that nearly two-thirds felt ER staff were rude, ignorant or misinformed about sickle cell disease, didn’t take their pain seriously or believed they were drug seekers.

A Pained Life: My Teaching Moment

By Carol Levy, PNN Columnist

There are not many positives to being in chronic pain, or having the disorders and diseases that cause it. But I think I found one.

Being harassed for not being able to wear a mask was a horrific experience for me. No good could come out of it, I thought, until I realized it could have been a perfect teaching moment.

I complained to a friend, who also has trigeminal neuralgia, how upsetting it was to be mask shamed, and that I feared it would happen again.

Her response was to send me a business-sized card to hand out that explained why I couldn't mask.

It reads: “I have facial pain. Any touch to the side of my face causes horrific pain. That is why I can’t wear a mask.”

I liked the card, but didn't feel comfortable handing it out. I put it in a drawer and left it there. But then, at the dental clinic, I was repeatedly handed a mask and told, “You need to put this on.”

Each time I had to pull out my doctor's note and explain why I would not and could not mask. It became very tiresome.

Then I remembered the card. I thought it needed to be more explicit and instructive, so I made another card that says this:

“Trigeminal neuralgia is a neurological disorder of the 5th cranial nerve that gives sensation to your face. With trigeminal neuralgia the sensation is severe, often excruciating pain, on its own as well with any touch to the affected area of the face involved.”

On my next visit to the dental clinic, I was handed a mask. Instead of saying, “I can't” and having the back and forth of “Why not?” and “A mask can't hurt you,” I handed her my and card said, “This is why I can't mask.”

She read it and said, “Okay. You don’t need to mask.”

It was a perfect way to educate her about trigeminal neuralgia, and cut off the debate that often ensues.

It’s easy to make a card. The small size of a business card makes it difficult to do anything but present the most important parts of the disorder or disease we have. For instance, for CRPS it could read:

“I have a disorder called CRPS, or complex regional pain syndrome. It is caused by dysfunction of nerves that carry pain signals to the brain. It causes spontaneous and touch-induced pain that is often disabling.”

Of course, that is not a full description of CRPS, but gives just enough information to be instructive and hopefully understandable to those who ask why you can’t do something.

Handing out the card makes me feel good. It’s a teachable moment. Being able to educate others may be the best thing we can do for ourselves. 

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.

UK Warns Pregnant Women About Taking Pregabalin

By Pat Anson, PNN Editor

Health officials in the UK are warning women of childbearing age that pregabalin (Lyrica), a drug commonly prescribed for pain, anxiety and epilepsy, raises the risk of major birth defects.

A recent study in four Nordic countries of over 2,700 pregnancies found that 5.6% of babies born to women who took pregabalin in the first three months of pregnancy had birth abnormalities. That compares to 4.1% of babies whose mothers did not use pregabalin.  

“The study showed that taking pregabalin during early pregnancy was associated with a slightly increased chance of having a baby who is born with a physical birth abnormality. It is important to note that this study could not show that pregabalin was the cause of the physical birth abnormalities,” the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) said in a new safety alert.

The birth defects associated with pregabalin primarily involved the nervous system, eyes, face, urinary system and genitals. The MHRA – which regulates drugs in the UK – cautioned pregnant women not to stop taking pregabalin without talking to a doctor first.

“If you think you may be pregnant and are currently taking pregabalin, you should set up an appointment with your GP, specialist or nurse at your earliest opportunity, to discuss any concerns you may have. However, do continue to take pregabalin as prescribed until you can speak to them,” the MHRA alert said. “Untreated epilepsy, pain, or anxiety could be harmful to you and your unborn baby. It is important that you talk to your healthcare professional before stopping pregabalin or making any changes to your usual medicines.”

An international study in 2016 also linked pregabalin to birth defects. Women taking pregabalin were found to be six times more likely to have a baby with a major birth defect, including abnormalities in the heart, central nervous system (CNS) and other organs.

Pregabalin Concerns

In recent years, pregabalin has come under increased scrutiny in the UK.  In 2021, the MHRA said pregabalin was associated with serious breathing problems in people over age 65 and in patients with compromised respiratory systems.

Doctors in Northern Ireland were also told last year not to prescribe pregabalin for neuropathic pain due to a “significant increase” in drug-related deaths involving the drug.

In 2019, pregabalin and gabapentin (Neurontin) were both rescheduled as Class C drugs in the UK due to a rising number of overdose deaths. Health experts said the medications cause “an elevated mood in users” and could have serious side effects when combined with other drugs.

Lyrica and Neurontin are two of Pfizer’s top selling drugs and generate billions of dollars in annual sales. They belong to a class of nerve medication called gabapentinoids that were originally developed to treat seizures, but are now widely prescribed as an alternative to opioid painkillers. A 2019 study found little evidence that gabapentinoids should be used to treat pain and said their effectiveness was often exaggerated by prescribing guidelines.

In the United States, where Lyrica is approved for fibromyalgia, neuropathic pain, seizures and postherpetic neuralgia, the FDA’s lengthy warning label states that “there are no adequate and well-controlled studies with Lyrica in pregnant women,” but at the same time cautions that “Lyrica may harm your unborn baby.”  

An earlier warning label said it was “not known if Lyrica will harm your unborn baby.”

What Are the Long-Term Risks of Prescription Opioids?

By Roger Chriss, PNN Columnist

A standard critique of prescription opioids is the absence of good long-term data on safety and efficacy. Clinical trials are generally short-term and last only a few weeks, so questions about cumulative long-term risks, including addiction and overdose, remain unclear.

Clinical trials that run for a year or more are complex and costly. Attrition may be high and outcomes may be muddied by the inevitable effects of aging, disease progression, and life events. There are also ethical issues involved with subjecting patients to long-term trials where they may receive nothing more than a placebo.

In other words, launching new trials is often impractical. Fortunately, there are a few other ways to answer questions about long-term opioid risk.

Compare Outcomes

First, we can compare outcomes among patients whose key difference is opioid dosage. In a recent Canadian study, researchers looked at over 2 million individuals in Ontario given an opioid prescription between 2013 and 2016 for pain. They identified 1,121 patients who had a fatal or non-fatal overdose – a minuscule overdose rate of 0.0055 percent.

But when compared to patients getting relatively low daily doses of 20 morphine milligram equivalents (MME), those who received 200 MME or more had a “high hazard of overdose.”  

A dose of 200 MME may be an extreme example, since Canadian guidelines recommend that initial doses be limited to no more than 50 MME. But researchers said their study proves the value of guidelines. 

“Although the absolute risk of an opioid overdose within the first year of prescription opioid use is low, better alignment of opioid initiation practices with guidelines may reduce opioid-related harm,” they concluded. 

Compare Opioids 

Second, we can compare two opioids: oxycodone and hydrocodone. In a retrospective analysis of patients in Oregon between 2015 and 2017, researchers found that after an initial prescription in opioid-naive people, 0.3% experienced a fatal or non-fatal overdose and 2.8% refilled an opioid prescription at least six times, what the researchers considered “chronic opioid use.” 

Patients who received oxycodone were less likely to develop chronic use than those receiving hydrocodone, but the oxycodone patients had a slightly higher risk of overdose.  

Based on that finding, researchers concluded that “hydrocodone may be the favorable agent” when starting people on opioids. 

Compare Odds

We can also use statistical inference to estimate risks. In an analysis of 13,884 U.S. adults living with chronic pain between 1999 and 2004, epidemiologists found that 5% died from all causes within 3 years and 9% died within 5 years.  

Researchers found that chronic pain patients on opioids had a slightly higher risk of death – and calculated an odds ratio of 1.06 for them dying within three years and 1.03 at five years compared to those not taking opioids.  

It’s hard to infer much from a study like that, because researchers didn’t establish a causal relationship between opioids and death. Since chronic pain itself raises the risk of dying, the findings could simply mean that patients on opioids are sicker, in more pain, and closer to death.  

Despite this, researchers came to the sweeping conclusion that “chronic pain increased the risk of all-cause mortality through opioid prescriptions.” 

Compare Health Outcomes 

Last, we can look at health outcomes. An alarming, preliminary study from Taiwan evaluated chronic pain patients on long-term opioid therapy and found they have significantly higher risk for cancer compared to those not taking opioids. 

The overall hazard ratio for the opioid group was 2.66 – which means they have over twice the risk of having many different types of cancer. 

“Long-term opioid use might be a significant risk factor for breast, gastric, colorectal, ovarian, prostate, lung, pancreatic, head and neck, and esophageal cancers and HCC (hepatocellular carcinoma),” researchers concluded in their study, which has not yet been peer-reviewed. 

Risks of Other Drugs 

These findings help shed light on the long-term risks of prescription opioids, at least compared to healthy control subjects who do not take opioids. However, that is not the situation faced by most people with chronic illness, who are often on multiple medications to manage their pain and other symptoms.  

As a result, we need to know the risks of non-opioid pain management options. For instance, the consequences of cannabis addiction are low compared to opioids. But the cancer risk appears to be substantially higher. A major review in BMC Archives of Public Health found that “cannabinoids including THC and cannabidiol are important community carcinogens exceeding the effects of tobacco or alcohol.”

The risks of non-steroidal anti-inflammatory drugs (NSAIDs) are well-known. According to a 2011 review, “chronic NSAID use increases the risk of peptic ulcer disease, acute renal failure, and stroke/myocardial infarction. Moreover, chronic NSAID use can exacerbate a number of chronic diseases including heart failure and hypertension.” 

For other non-opioid medications, we lack long-term studies. For instance, a 2017 Cochrane review on gabapentin for chronic neuropathic pain notes that “study duration was typically four to 12 weeks.” Cochrane also notes that only short-term trials were conducted for serotonin and norepinephrine reuptake inhibitors like duloxetine for fibromyalgia.  

As for non-pharmacological options like spinal cord stimulators, the situation is similarly uncertain. A new Australian study in the Journal of Patient Safety found that for every 10 stimulators that were surgically implanted, four had to me removed for various reasons. That outcome went unnoticed in short-term studies and emphasizes the need for more careful patient selection and monitoring of outcomes.  

There are real risks to prescription opioids but it would be simplistic to dismiss them entirely. As pain physician Antje Barreveld notes in a recent STAT News op-ed: “Opioids do have a place in pain control and can be safely prescribed, even at high doses, by following best practices while monitoring for risks and side effects.” 

Understanding the long-term risks of prescription opioids will be important as the CDC finalizes its revised opioid guideline, and as regulators, insurers and clinicians decide how to act on them. But more generally, we need long-term studies of all pain management modalities so that we can better understand their risks.

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

Prescription Opioid Use Fell Nearly 7% in 2021

By Pat Anson, PNN Editor

Prescription opioid use in the United States fell by 6.9% in 2021, the tenth consecutive year the volume of opioid pain medication has declined, according to a new report by the IQVIA Institute, a healthcare data tracking firm.

The decline in opioid consumption came even as prescription drug use overall reached record levels in 2021, fueled in part by new COVID-19 vaccines and therapeutics. Spending on medicines rose 12% to $407 billion last year, according to IQVIA, with 194 billion doses of medication dispensed.

While longer opioid prescriptions were written in the early stages of the pandemic to accommodate patients who didn’t see their doctors as often, prescribing quickly returned to its decade-long downward trend.

“Prescription opioid use has fallen by 48% over the past five years and is now at levels last seen in 2000, reflecting efforts by many stakeholders to limit and manage appropriate prescription opioid use,” IQVIA said in its annual report on medicines in the U.S.      

IQVIA tracks opioid prescriptions in morphine milligram equivalents (MMEs). The company estimates that per capita opioid use fell to 309 MME last year (about 0.84 MME per day), down from a peak of nearly 800 MME in 2011.

Some providers have reduced their opioid prescribing more than others. Since 2016, surgeons, anesthesiologists, dentists and general practitioners have cut their opioid prescribing by over 50 percent, while nurse practitioners and physician assistants have reduced their prescribing by 27 percent.

Prescription Opioid Use and by Prescriber Specialty

Opioid consumption by Americans has fallen so sharply in recent years that Canada, Australia and several European countries have overtaken the U.S. and become the highest consumers of opioid medication. A recent study ranks the U.S. as 8th globally in per capita opioid sales.

The decline in U.S. opioid prescribing has failed to stop the surge in overdoses. The CDC estimates that 106,854 people died from drug overdoses in the 12-month period ending November 2021, with drug deaths more than doubling in the last six years. Synthetic opioids – primarily illicit fentanyl – were involved in about two-thirds of fatal overdoses in the past year.

Patients Blamed for Diversion 

Despite the historic decline in prescription opioid use, some politicians continue to blame opioid medication, prescribers and even patients for the nation’s overdose epidemic.

In comments recently submitted to the CDC on its revised opioid guideline, West Virginia Attorney General Patrick Morrisey and 10 other state attorneys general said the agency needs to do more to prevent the diversion of prescription opioids.

“Diversion must remain a key consideration of any prescribing guideline,” said Morrisey.

“Although drug dealers and unethical physicians are responsible for much of the opioid diversion nationwide, legitimate prescriptions remain a prime source of diversion, too. Diverted opioids most commonly reach drug abusers through friends and family members who filled a legitimate prescription.

“The amount of opioids prescribed in recent years has been excessive and far beyond the amount necessary to support legitimate medical need.”

— Patrick Morrisey, West Virginia Attorney General

“Indeed, the amount of opioids prescribed in recent years has been excessive and far beyond the amount necessary to support legitimate medical need. And over-prescription allows legitimate prescriptions to fall into the hands of patients’ family and friends.”

How common is it for prescription opioids to be diverted? Not common at all, according to the DEA’s National Drug Threat Assessment, an annual report that estimates less than 1% of legally prescribed opioids are diverted.  “The number of opioid dosage units available on the retail market and opioid thefts and losses reached their lowest levels in nine years,” the DEA’s 2020 report found.

Despite this, Morrisey puts the onus on pain patients to prove that they’re not abusing or selling their prescriptions. He and the other attorneys general called for routine drug testing of pain patients – rejecting evidence that fraud is common is the drug testing industry and that widely used point-of-care urine tests often give false results that lead to patient abandonment.

“The given reasons that toxicology screenings might lead to ‘stigmatization,’ encourage ‘inappropriate termination from care,’ or be ‘misinterpreted’ are unsatisfactory,” Morrisey wrote. “First, what stigma would the patient face? Diagnostic results are private information. The only people who would know that the test is performed are the patient and the prescriber. The prescriber is already familiar with the patient’s prescriptions, so this process would not reveal any new information -- unless, of course, the patient had lied or not followed the prescriber’s directions.”

Remarkably, the 7-page letter from Morrisey never acknowledges that most drug deaths involve street drugs, not prescription opioids, and makes no mention of fentanyl. The most recent overdose data from West Virginia – Morrisey’s home state – indicates nearly 3 out of 4 drug deaths involve fentanyl.    

Morrisey’s letter was co-signed by the attorneys general of Arkansas, Indiana, Kansas, Mississippi,
Nebraska, South Carolina, South Dakota, Utah, Kentucky and Virginia.

FDA Warns Supplements for Pain Contain Undeclared Drugs

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration is warning consumers not to purchase or use dietary supplements marketed for pain relief under the brand names “Artri King” or “Ortiga” due to potentially dangerous ingredients not listed on their labels. Use of the products has led to at least one death, according to the FDA.

The Artri King and Ortiga supplements are promoted as treatments for arthritis, muscle aches, osteoporosis, bone cancer and other painful conditions – and list ingredients such as glucosamine, turmeric and Omega 3. But FDA laboratory analyses found the supplements also contain undeclared drugs such as steroids, muscle relaxants and non-steroidal anti-inflammatory drugs (NSAIDs):

• Dexamethasone (a corticosteroid) is commonly used to treat inflammatory conditions. It can impair a person’s ability to fight an infection and at high doses can cause increased blood glucose levels, changes in blood pressure, damage to bones, psychiatric problems and adrenal dysfunction.

• Diclofenac sodium (a NSAID) can raise the risk of cardiovascular problems, such as heart attack and stroke; serious gastrointestinal damage, including bleeding, ulcers, and fatal tears of the stomach and intestines; and liver toxicity that can result in death or the need for a liver transplant.

• Methocarbamol (a muscle relaxant) can cause sedation, dizziness and low blood pressure.

Artri King advertisement

The FDA urges consumers taking the supplements to immediately talk to a healthcare provider about safely discontinuing their use because suddenly stopping the undeclared drugs may be dangerous. The drugs may also interact with other medications a person is taking.

The FDA said it has received reports of adverse events, including liver toxicity and death, associated with the use of Artri Ajo King supplements since the agency issued its first warning on January 5, 2022. A second warning about Artri King was issued this week.

The FDA’s new warnings include Ortiga Mas Ajo Rey and Ortiga Mas Ajo Rey Extra Forte supplements, which are promoted as treatments for joint pain and arthritis.

Artri King and Ortiga sold their products on various websites, including Amazon, Walmart and E-Bay, as well as some retail stores, primarily targeting Spanish-speaking consumers.

Acetaminophen Warning Labels Ineffective

Sometimes warnings from government health agencies don’t have their intended impact. Such is the case for warnings from Health Canada about taking high doses of acetaminophen, a pain reliever widely used in over-the-counter medicines for headache, cough, cold and flu.

Product labels for acetaminophen were changed in Canada in 2009 to warn of the risk of possible liver damage. In 2016, the labeling was updated with additional information about safe dosing and to identify products containing acetaminophen.

But those changes did not decrease rates of hospitalization for acetaminophen overdoses, according to a new study published in CMAJ (Canadian Medical Association Journal).  In an analysis of more than 12 000 hospital admissions for acetaminophen overdoses in Canada between 2004 and 2020, researchers found the updated warning labels had little impact.

"We found that changes to acetaminophen labels that communicated the risks of overdose and the presence of acetaminophen in over-the-counter products did not affect rates of hospital admission for accidental acetaminophen overdose, ICU admission for accidental acetaminophen overdose and admission for acetaminophen overdoses involving opioids," writes lead author Dr. Tony Antoniou, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto.

Previous research has found that less than half of patients regularly read labels for over-the counter analgesics, and only 26% read the active ingredients before using them the first time. Acetaminophen is used in so many different products that consumers may be unaware how much they’re taking. As a result, up to 6% of patients exceed the maximum daily recommended dose.

The FDA warned U.S. consumers about the risk of acetaminophen causing liver injury in 2009. Five years later, the agency told manufacturers to stop selling drug products with more than 325 milligrams of acetaminophen per dose.

Those actions have done little to prevent adverse reactions to acetaminophen. According to the FDA’s Adverse Events Reporting System, nearly 2,800 adverse events involving acetaminophen were reported in 2009. By 2021, the number of adverse events had grown to over 15,000, a 440% increase. Over 27,000 drug deaths involving acetaminophen were reported from 2009 to 2021.

Breathless: My Anger at a Failing Body

By Cynthia Toussaint, PNN Columnist

Once upon a time, life was easy. Breathing was a breeze, lungs filled with promise and hope.

Then I got sick. Really sick. Of late, when I look back at the last forty years, I’m uncharacteristically angry that my Complex Regional Pain Syndrome stole my life, taking that breath away.

I’m spitting mad that my body keeps failing me. It’s seemingly giving me the finger for having a positive attitude and taking care of myself, as all I get is sicker and sicker. I’m tired of being the good sport, forever the one with “super human strength” who flashes a smile no matter what.

I hate 2022, as it’s trending to be my most miserable year yet. If it ain’t one thing, it’s another. To start, I had a monster of a virus all of January, most of March, and my symptoms are here again in mid-April. I can’t shake this ever-revolving bug that perplexes my doctors.

They can’t figure out my debilitating fatigue, laryngitis and diarrhea, all complimented by vertigo and, yes, difficulty breathing. Even my once heavenly swims have turned into an exercise of wheezing and gasping.

I recently got a work-up including labs and chest x-ray, but everything came out normal. A friend mentioned her concern that I might have symptoms of an impending heart attack. Yeah, wouldn’t be surprised.

I’m also mad as hell because COVID never ends. At least not for me. When we were all in this together, the isolation was do-able. In fact, it was comforting because, for once, I wasn’t the only one alone.

But now I’m left behind because being immuno-compromised with an assembly of autoimmune conditions puts me at high risk for long COVID. I feel lonelier than ever watching the world reconnect, while hearing of new variants and upcoming surges.

To top it off, my vaccines and booster shots were hell. With each dose, I’m left reeling with intense fibro flares, hives and many of my previous chemotherapy side-effects. Oh, did I mention I fought Triple Negative Breast Cancer in 2020, the WORST thing I’ve ever been through?

Breathe, Cynthia. Breathe.      

And then there’s this. During the rare times I escape the condo, N95 dutifully strapped on, I resent the never-ending pity looks and pointing because I use a wheelchair. Folks, it’s been FOUR DECADES of this transportation humiliation. I feel like I’m going to lose it the next time someone looks beyond me to ask my partner John what my name is. Or gives me the classic, “It’s so good that people like you get out.”

I find myself staring in awe at people who can walk without a thought. They’re free and don’t even know it. I must admit, these days I resent them for it. When I’m outside, seems it’s always just me and some little old man who are in this wheeled imprisonment. I even resent the old man, cuz he got his turn at life.

This post wouldn’t be complete without exhaling a potentially catastrophic cliff-hanger. Yeah, I’m talking about the aforementioned “Big C.” Since remission, I live in constant fear that it will recur much more aggressively in the first two years, what Triple-Negative is masterful at!

A few days ago, I went in for my periodic breast exam, a ritual that keeps me from hyperventilating during my MRIs. The exams have always been clear, which helps me get through the maelstrom of “scanxiety.”

I felt oddly confident this go-around, even enjoying small talk with my oncologist. After all, this was the lead up to my two-year MRI. I was almost home free when the energy in the room shifted. Completely. My doctor found an enlarged lymph node under my arm that he thinks is a recurrence. Or, better yet, a whole new cancer.

I’m suffocating.   

While I await my imaging results, I’m short-tempered and yell a lot. The cats run under the bed. Fearing the worst, I wonder if my body can fight aggressive cancer again. Let’s face it, I won’t have a good shot the second time around.

Also, in my darkest moments, I’m not certain I have a life worth fighting for. I love myself deeply, but am struggling these days to find gratitude in a world that feels devoid of grace.

I don’t get it. I swear, I’ve been a good person my whole life. I’ve played by the rules, worked hard and always helped the less fortunate.

People tell me to be positive, but I’m just angry. Maybe my rage will turn back to strength and unflagging perseverance. Maybe not. All I know is that I can’t catch my breath. 

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 became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Cannabis Legalization Reduced Rx Drug Use for Several Conditions, Not Just Pain

By Pat Anson, PNN Editor

Cannabis products are often touted for their pain relieving properties and some studies have shown that medical marijuana can even help patients reduce their use of opioids.

But a large new study by researchers at Cornell University found that legalization of recreational marijuana significantly reduced demand for a broad range of prescription drugs used to treat depression, anxiety, seizures and other health conditions.

The study, published in the journal Health Economics, looked at prescription data for Medicaid patients in all 50 states from 2011 to 2019, focusing on 11 states where the recreational use of cannabis was legalized: Arizona, Alaska, California, Colorado, Maine, Massachusetts, Michigan, Nevada, Oregon, Vermont and Washington.

Researchers found significant reductions in Medicaid prescribing rates for pain and five other condition-specific drug classes after the first year of legalization:

• -12.2% Anxiety

• -11.1% Depression

• -10.8% Sleep  

• -10.7% Psychosis

•  -9.5% Seizures

•    -8% Pain

Prescribing rates for the six conditions declined even more in the second and third years after recreational cannabis was legalized.

"These results have important implications," wrote lead author Shyam Raman, a doctoral student in the Cornell Jeb E. Brooks School of Public Policy. "The reductions in drug utilization that we find could lead to significant cost savings for state Medicaid programs. The results also indicate a potential harm reduction opportunity, as pharmaceutical drugs often come with dangerous side effects or – as with opioids – potential for misuse.”

Raman and his colleagues did not see a measurable change in the prescribing of drugs used to treat nausea, spasticity or glaucoma. They also note that their study did not look at the health of patients who stopped or reduced their use of prescription drugs, or at the long-term effects of substituting cannabis for pharmaceuticals.

A small study at Harvard Medical School recently found that chronic pain patients reported significant improvements in their pain, sleep, mood, anxiety and quality of life after six months of cannabis therapy.

Recreational cannabis is now legal in 18 states and Washington, DC, while medical marijuana is legal in 37 states and Washington, DC. Cannabis has become so popular — and accessible — that a recent Harris poll found that twice as many Americans are using cannabis or cannabidiol (CBD) to manage their pain than opioids.

While the findings are intriguing, the small number of patients involved in most cannabis studies makes it hard to draw firm conclusions. In 2021, two professional pain societies – the International Association for the Study of Pain (IASP) and the Australian and New Zealand College of Anaesthetists -- released policy statements saying they could not endorse the use of cannabis for pain because there are no large, high-quality clinical trials of cannabis as an analgesic.

HIPAA-critical Vaccine Exemptions

By Mia Maysack, PNN Columnist

A friend recently invited me to a concert that demanded proof of full vaccination against covid or at least a medical exemption from getting one. 

I want to make it clear that I'm not an "anti-vaxxer." But I personally do not feel that I can tell another person what to do with their own body. I exist as a chronically ill person due to circumstances that were entirely out of my control as a child. Through the years, managing these ailments has been daunting, and mainstream treatment options inflicted even more complications that I still live with to this day. 

For credibility’s sake, you should know that I received an average of 30 injections every three months for about 15 years as a method for pain control. The last time I went in, my world was flipped upside down by such a bad reaction to the shots that I haven't returned for that treatment or any other mainstream approaches to medicine.  

Although I'm aware it could've been an allergic reaction (they've been producing cheap medication overseas), I have no reason to expect such a thing won’t occur again. The words “rare” and “unlikely” don’t mean much when bacterial meningitis threatened my young life through an untreated ear infection. That wasn’t a foreseeable circumstance either. So the fact remains: no one can be sure what they are getting. Due to how difficult it has been to survive in this body up to now, I'm not content on taking any more unnecessary risks. 

I requested and was denied a vaccine exemption, the desire for which did not stem from any place of entitlement, but because I cannot gamble with my quality of life. The fact that I'm expected to is an illustration of the deeply rooted problems within our healthcare system and proves that, despite what they claim, it is not operating from a place of patient-centeredness.  

I don't find contentment with the reassurance that few adverse reactions have been reported from covid vaccines, because I personally know people who have experienced them and there simply hasn't been enough time passed for anyone to even begin to know what things could happen down the line. 

I was told that an exemption isn’t something my clinic can do, not even for religious reasons, because they consider it a “personal choice.” The only way to have it granted is to literally attempt an injection and experience adverse effects. But that’s something I’ve already – and barely -- lived through. 

Suffice to say, this is not a one-size-fits-all situation. They encourage everyone to get vaccinated, but why does that encouragement feel more like I’m being forced? I know what's best for my body and if/when I do take the jab, it’ll be on my terms and not because I was bullied into it. 

The job of medical professionals is to honor and be a partner in care. I know this because I was once one of them, but had to step off my beloved hospital floor for good after a setback in my health. Back then, under the Health Insurance Portability and Accountability Act (HIPAA), we could’ve lost our jobs for peeking into our own medical charts. Yet now we’re suddenly expected to carry personal health information on us at all times and surrender it to everyone who demands it.  How is that not a HIPAA violation? 

Regardless of your stance on the science, it’s undeniable that this conduct is questionable at best. Why are we continuing to allow it? The intention here is not to shame anyone for their choices, but to draw attention to our freedom of choice essentially being eliminated. 

There are many different forms of “justice” but our systems have been designed in ways that evade them, along with any responsibility for their lack of equity.  It’s undoubtedly a hindrance, not only for patients, but our constitutional rights. If this is how our institutions are operating, we should be holding them to public accountability.  

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia 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. 

Mistrust Shadows CDC Over New Opioid Dose Guidance

By Pat Anson, PNN Editor

Pain patients and healthcare providers are giving mixed reviews to proposed changes to the CDC opioid guideline, according to a large new survey that found many are skeptical the revisions will make doctors more willing to prescribe opioids. Others fear the revised draft could lead to even lower and ineffective doses of opioids being prescribed.

Over 2,500 patients, providers and caregivers responded to PNN’s survey on the revised opioid guideline, which is intended to undo some of the damage caused by the agency’s 2016 guideline.

States, insurers, regulators and law enforcement made many of the original guideline’s voluntary recommendations mandatory, resulting in millions of patients being abruptly tapered or taken off opioids. Fearing scrutiny or even prosecution for “overprescribing” opioids, some doctors stopped treating pain altogether.

Like the original guideline, the revised draft still discourages the use of opioids, but clearly states the CDC’s recommendations are intended “to support, not supplant, clinical judgment” and “should not be applied as inflexible standards of care.”

When asked if the revised 211-page guideline is an improvement over the original, only four out of ten people (39%) said it was “improved” or “much improved.”  Most respondents said it was about the same or even worse.

“It is very long and involved but seems like a bait and switch. Starts out speaking to the damage done by 2016 guideline. Then seems to restrict needed medication even more,” a patient told us. 

“Both the original and the revised guidelines are fraught with politics. Nothing's changed. The guidelines are still as harmful as they were when they were published in 2016. No appreciable improvements have been made,” said another. 

IS THE REVISED GUIDELINE AN IMPROVEMENT OVER 2016 GUIDELINE?

“It looks like a step in the right direction, but I'm not sure. I don't think the CDC should be interfering between doctors and their patients,” another patient said.  “My current doctor had his practice raided in a Gestapo-like action that found zero violations. CDC and DEA need to back off and let doctors treat their patients.”

50 MME Perceived As New Hard Limit

The 2016 guideline strongly encouraged doctors not to write prescriptions that exceed doses of 90 morphine milligram equivalents (MME) per day. That 90 MME limit has been dropped from the revised draft, but doctors are still urged to be cautious about going over 50 MME because higher doses have “diminishing returns in benefits relative to risks.”

The language about 50 MME is essentially unchanged from the 2016 guideline, but many patients and providers are worried about it. Over 97% of survey respondents said they are “somewhat concerned” or “very concerned” that 50 MME will be seen as the new hard limit for doses, a level many consider inadequate for pain relief.

“The CDC is assuming that, by reducing the misapplied 90 MME standard to 50 MME, it will reduce misapplication of the standard. Faulty logic. It will, in fact, make it even harder for pain patients to be prescribed more than 50 MME, and the result will be more people in more pain and an increase in pain patient suicides,” one patient told us.

“There should be NO MME! It is too specific to use for everyone. We shouldn't be treated all the same. Each person's pain is different. It was bad enough when it was 90, to now reduce it to 50 MME is just awful,” another patient wrote.  

“50 MME will be the new 90 MME. That’s the crux of it, despite the flowery fenestration and hollow words that 2016 gave the wrong impression. They are merely patronizing us, while lowering the guidelines for how much doctors will actually prescribe,” said another.

ARE YOU CONCERNED 50 MME WILL BE SEEN AS THE NEW HARD LIMIT FOR OPIOIDS?

“There should be no specific numbers concerning daily dosages. This should be between a patient and their doctor. All of the state laws that control opioid medications need to be overturned and the CDC needs to stop attempting to practice medicine,” a patient said.

‘Leave Pain Management to the Experts’

People are also skeptical that the revisions will ease doctors’ concerns about prescribing opioids. Nearly two-thirds (61%) said the changes won’t make doctors more willing to prescribe the drugs. 

“I'm glad they are changing, but I think the damage has already been done. My doctor took me off pain meds completely and life has been a living hell! Now that he's done that, I don't think he will be open to prescribing them again no matter how many chronic pain issues I have!” said a patient. 

“My doctors took me off pain meds because they were afraid of losing their license and they still are. I sent (them) the link to the new guidelines and they still will not do anything for my pain,” another patient said. “One doctor said, ‘If we give pain meds to our patients who need it, CDC will still be after us for giving pain meds so we can’t take that chance.’” 

DO YOU THINK REVISIONS WILL MAKE DOCTORS MORE WILLING TO PRESCRIBE OPIOIDS?

“I think the CDC needs to keep his nose out of providers business. I’ve been practicing pain management for 22 years,” a doctor told us. “The CDC guidelines of 2016 have ruined untold lives because they stuck their nose somewhere they shouldn’t have. Leave pain management to the experts and let them decide what each patient needs based on their individual condition.” 

Guideline Expansion

Patients and providers are a bit more receptive about the guideline being expanded to include recommendations for treating short-term acute pain (55%), as well as a handful of specific pain conditions, such as low back pain and migraine (53%).  

Patients with severe constant pain — known an intractable pain — feel left out of the guideline. The word “intractable” is not even mentioned in the draft revision. While some types of severe pain, like cancer pain and sickle cell pain, are specifically excluded from the guideline, others are not.

“I wish that consideration would be given for patients who have intractable pain and have already jumped through the hoops of therapy and other treatments and have found that they didn’t help. It is beyond discouraging to have to repeat trials of treatments that never work for that particular patient,” said one patient.

“There is no difference in cancer and non-cancer pain. Pain is pain. If they’re going to include any conditions (which I don’t think they should) they should recognize rare and incurable illnesses, not just low back pain, sickle cell, and cancer,” another patient wrote. 

End Mandatory Policies

Large majorities also think the CDC needs to do a better job tracking the impact of its guideline on patients (95%) and making sure it is not used to create mandatory policies (96%).

The American Medical Association has even recommended that the CDC undertake a “a national marketing and communications campaign” to make clear to law enforcement and healthcare providers that the revised guideline should not be used like its predecessor to adopt rules that replace individualized patient care. 

Many of our survey respondents agree. Without the elimination of laws and policies that dictate how pain should be treated, no amount of revisions to the guideline will not undo the damage the CDC’s recommendations have already caused. 

“It should be made clear to the doctors willing, but currently afraid, to prescribe opioids now for fear of fines, loss of income and even jail, that they won't be penalized for properly caring for their patients,” said one patient. “These doctors feel their livelihood has been threatened just for doing their job, which is to help people in pain. They are no longer doing that.” 

For more survey findings, including whether respondents think the CDC guideline should be revised or revoked, click here. You can see the full survey results here.

The CDC recently close a public comment period on the guideline revisions. Over 5,400 comments have been received and publicly posted, which you can read here. The CDC is not expected to adopt the final version of its revised guideline until late this year.  

Too Little, Too Late: Patients and Providers Say Changes to CDC Opioid Guideline Inadequate

By Pat Anson, PNN Editor

Proposed changes to the CDC’s opioid prescribing guideline are inadequate and will not undo the damage caused to patients and the practice of pain management, according to a large new survey by Pain News Network.

The Centers for Disease Control and Prevention released a long-awaited draft revision of its 2016 guideline in February, giving healthcare providers more flexibility in how they manage pain with opioids. Although voluntary, the original guideline was widely misapplied as a rigid “standard of care” by many states, insurers, doctors and law enforcement, causing millions of patients to be taken off opioids or tapered to lower doses.

The revised guideline states that “opioids can be essential medications for the management of pain” and encourages doctors to use their own best judgement when prescribing them. But many patients and providers believe the changes don’t go far enough and may even make the crisis in pain care worse.

“Appreciate the effort, but too little too late. These revisions are like trying to prevent disaster by course correcting the Titanic after it hit the iceberg,” one patient told us. “The revisions offer no protection against overzealous DEA interference and prosecution, and are meaningless in court. Until the draconian laws spawned by the guidelines are changed, things will only continue to get worse.”

“I believe it is a small step in the right direction, though the damage has already been done. The doctors who truly care about their patients and would like to help them are still terrified of the potential repercussions from the governing bodies,” another patient said.

“In 45 years of treating patients with pain, I have never seen it so difficult for patients to have their reports of pain taken seriously and get access to pain treatment,” a doctor said. “Patients often feel treated like addicts, and have had many professionals and family members supporting that erroneous and stigmatizing label.”

‘I Barely Leave the House’

Over 2,500 patients, providers and caregivers in the U.S. responded to PNN’s survey, the vast majority (94%) identifying themselves as patients with either chronic or short-term acute pain.

Over half the patients (57%) rated the quality of their pain care as poor or very poor. Only one in five (20%) rated it good or very good.

This was the fifth survey we’ve conducted on the CDC guideline. Like the others, people expressed strong opinions about the agency’s recommendations and how they’ve impacted pain care.

“My pain medication was involuntarily reduced by 75% since the the last guideline was published,” a patient told us. “Now I barely leave the house. I can't do my physical therapy due to excessive pain.”

HOW WOULD YOU RATE THE CURRENT QUALITY OF YOUR PAIN CARE?

“The 2016 guidelines caused me to have to go on disability, spend 20 hours a day in bed due to severe back pain, and sell a bank consulting company that I had run successfully for 20 years. The CDC needs to get out of pain medicine,” another patient said.

Should CDC Have Opioid Guideline?

When asked if the CDC should even have guidelines for pain management and opioid prescribing, eight out of ten respondents (84%) said no. Many said the agency overstepped its authority.

“It is outside the CDC's charter and purpose to publish opioid guidelines. If an opioid guideline is needed, that would be the FDA's responsibility. Why is our government even allowing the CDC to do this? They are expending resources on something that is unnecessary and outside of their area of responsibility,” a patient wrote.

“The "D" in "CDC' is for "disease." Pain is not a disease. CDC should stick to its mission,” said another patient. 

“The CDC should not be allowed to regulate pain medications. The CDC conveniently made a disease to justify getting involved in an area that was not their area to regulate. The guidelines were biased against chronic pain. The (guideline) panel was biased by people with preconceived ideas,” a provider wrote. 

‘Made Each Day a Living Hell’

Asked if the 2016 opioid guideline improved the quality of pain care or made it worse, nearly nine out of ten respondents (88%) said pain care in the U.S. was significantly worse. Only 2% believe the guideline improved pain care. 

“I had a friend that was seeing a pain management physician, and he was on high dose opiates for 10 years due to a car accident, and because of the 2016 guidelines, his doctor became very fearful and took him off his meds,” a patient told us. “That person committed suicide.”

“CDC regulations may have saved the lives of some addiction-prone people, but it's made each day a living hell for millions of us with progressive chronic pain,” another patient said.

“The damage has been done. Patients are still dead, physicians are still terrified, and these deaths and loss of practice were totally unnecessary. It is a disgusting example of ill-informed government over reach,” said another.

DID 2016 GUIDELINE IMPROVE PAIN CARE OR MAKE IT WORSE?

‘Pain Drove Me to Street Drugs’

Perhaps the most damning assessment of the 2016 guideline is that it made the opioid crisis worse – an opinion shared by nearly eight out of ten survey respondents (78%). When denied access to opioids, some patients have turned to street drugs.

“Chronic pain drove me to use street drugs, including fentanyl, when all I needed was a doctor to prescribe a safe medicine for me,” a patient told us. “It's messed up I have to do this for relief.”

“Patients know about their pain, doctors know their patients, the CDC does not know individual patients. Making it harder to get much needed medications is what causes people to try and obtain opioids illegally,” said a patient.

“People in chronic pain who cannot get relief from doctors are turning to street drugs - and THEN getting hooked. The CDC is CAUSING drug addiction,” wrote another patient.

“The people who benefit from the CDC guidelines are lawyers, politicians and drug dealers. The drug dealers can sit back and rake in the money while the CDC, lawyers and politicians do their work for them.”

DO YOU THINK THE 2016 GUIDELINE MADE THE OPIOID CRISIS WORSE?

 ‘Revoke the Guidelines’

What should be done with the 2016 guideline? Should it be revised? Can it be fixed? Nearly two-thirds of respondents (63%) believe it should be completely revoked or withdrawn. About 36% believe changes are needed to make opioid medication more accessible.

“The CDC needs to completely revoke the 2016 guidelines and let trained professionals treat their patients for pain. Unfortunately, some of the damage that was done is irreversible and some patients have lost their lives as a consequence, and that lies squarely on the shoulders and consciousnesses of the CDC,” a provider told us.

“DESTROY IT NOW! No updates are needed,” a patient wrote. “Just get rid of these guidelines completely and get out of the middle, coming between a doctor and his pain patient, as well as the patient and their pharmacy.”

“Revoke the guidelines and revoke the CDC’s ability to have anything to do with medications, leave that to the FDA and doctors. Also revoke the DEA’s ability to prosecute and/or harass doctors and make them focus on drug dealers and cartels,” another patient wrote.

WHAT SHOULD BE DONE WITH 2016 GUIDELINE?

‘CDC Has Lost All Credibility’

Given all the problems created by the 2016 guideline and the lengthy delay in revising it, many people have lost faith in the CDC — once one of the most trusted government agencies in the U.S. Asked if the CDC could be trusted to handle the revision of the opioid guideline in an unbiased and scientific manner, nearly 96% said no.

“I do not and will never trust them. This revision is nothing more than putting lipstick on a pig,” a patient said.

“The CDC has lost all credibility with me. They lie, falsify records to suit their argument, pick and choose things in studies to support their argument, and they have anti-opioid zealots writing these guidelines. Clear conflict of interest! CDC and DEA need to get the hell out of my doctor-patient relationship!” said another patient.

“The CDC were warned their Guidelines would harm patients, and they moved forward anyway. They refused to monitor harm to patients or acknowledge it. The CDC's unethical behavior continues over and over at shocking levels. They have broken the public trust over and over. Nothing they've written can be trusted after these deliberate and intentional unethical choices,” a patient wrote.

For more survey findings, including what respondents think about the CDC’s new guidance about doses, click here. You can see the full survey results here.

When Symptoms Linger, Is It Long Covid?

By Nina Feldman, WHYY

Many Americans are discovering that recovering from covid-19 may take weeks or even months longer than expected, leaving them with lingering symptoms like intense fatigue or a racing pulse. But does that mean they have what’s known as long covid?

Though such cases may not always amount to debilitating long covid, which can leave people bedridden or unable to perform daily functions, it is common to take weeks to fully recover.

“There could be more to help people understand that it’s not always a quick bounce back right away after the initial infection,” said Dr. Ben Abramoff, director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine in Philadelphia. “This is still a very significant viral infection, and sometimes it’s just a more gradual recovery process than people’s previous viral illnesses.“

Recent federal health guidelines — which recommend only five days of isolation for those who test positive and are symptom-free — may inadvertently suggest most recoveries are, if not just five days long, pretty quick.

That’s the message I got, at least.

I’ve reported on the coronavirus pandemic since it started, and I thought I knew what an infection would be like for a young, otherwise healthy person like me. I knew even mild cases could develop into long covid. I thought they were relatively rare.

Like many Americans, I found myself slowed by a recovery that took more than a month — far longer than I had expected.

I got covid over Christmas. I was vaccinated and boosted, and my symptoms were mild: sore throat, sinus pressure and headache, extreme fatigue. I felt better after eight days, and I tested negative two days in a row on a rapid antigen test.

Soon after ending isolation, I had dinner with a friend. One glass of wine left me feeling like I’d had a whole bottle. I was bone-achingly exhausted but couldn’t sleep.

The insomnia continued for weeks. Activities that once energized me — walking in the cold, riding an exercise bike, taking a sauna — instead left me intensely tired.

The waves of fatigue, which I started calling “crashes,” felt like coming down with an illness in real time: weakened muscles, aches, the feeling that all you can do is lie down. The crashes would last a couple of days, and the cycle would repeat when I accidentally pushed myself beyond my new, unfamiliar limit.

My colleague Kenny Cooper is also young, healthy, vaccinated, and boosted. He was sick for almost two weeks before testing negative. His symptoms lingered a few more weeks. A persistent cough kept him from leaving the house.

“I just felt like there were weights on my chest. I couldn’t sleep properly. When I woke up, if I moved around too much, I would start coughing immediately,” he said.

Abramoff has seen about 1,100 patients since Penn’s post-covid clinic opened in June 2020. There is no official threshold at which someone officially becomes a long-covid patient, he said.

The clinic takes a comprehensive approach to patients who have had symptoms for months, evaluating and referring them to specialists, like pulmonologists, or social workers who can assist with medical leave and disability benefits.

Those coming to the clinic with symptoms lasting six to eight weeks, Abramoff said, are generally sent home to rest. They will likely get better on their own. He advises patients with lingering symptoms to adopt a “watchful waiting” approach: Keep in contact with a primary care doctor, and take things slowly while recovering.

“You have got to build based on your tolerance,” he said. “People were very sick, even if they weren’t in the hospital.”

A National Institutes of Health-funded study on long covid, called Recover, designates any case with symptoms lasting more than 30 days as long covid.

Dr. Stuart Katz, a New York University cardiologist who is the study’s principal investigator, said he estimates 25% to 30% of the nearly 60,000 covid patients in the study will fit the long-covid criteria.

The 30-day mark is an arbitrary cutoff, Katz said. “There’s this whole spectrum of changing symptoms over time.”

A study published in Nature last year tracked more than 4,000 covid patients from initial infection until symptoms subsided. Roughly 13% reported symptoms lasting more than 28 days. That dropped to 4.5% after eight weeks and 2.3% after 12 weeks, indicating most people with symptoms lasting more than a month will recover within another month or two.

That leaves potentially millions of Americans suffering from a variety of covid symptoms — some debilitating — and a lingering burden on the health care system and workforce.

Recent research from the Brookings Institution estimated that lasting covid symptoms could be responsible for up to 15% of the unfilled jobs in the U.S. labor market.

It took me about six weeks to start feeling better. My crashes got better, slowly, as a result of diligent rest and almost nothing else.

My colleague, Cooper, has also improved. His coughing fits have subsided, but he’s still dealing with brain fog.

The way most studies to date describe long covid would leave us out.

But what I’ve come to think of as my “medium covid” affected my life. I couldn’t socialize much, drink, or stay up past 9:30 p.m. It took me 10 weeks to go for my first run — I’d been too afraid to try, fearing another crash that would set me back again.

Failing to treat covid as a serious condition could prolong recovery. Patients should monitor and care for themselves attentively, no matter how mild the infection may seem, Abramoff said.

“It’s something that could kill somebody who’s in their 70s,” he said. “It’s not nothing.”

This story is part of a partnership that includes WHYY, NPR, and Kaiser Health News, a national newsroom that produces in-depth journalism about health issues.