An Old Disease Returns in Modern Times

By Pat Anson, PNN Editor

Dr. Forest Tennant may no longer be practicing medicine, but he continues his groundbreaking research into the causes and treatment of adhesive arachnoiditis (AA), a chronic, progressive and painful inflammation of spinal nerves.

Once a rare disease linked in the 19th century to infections such as syphilis and tuberculosis, arachnoiditis is re-appearing in surprising numbers and for completely different reasons. Tennant believes millions of Americans may have developed AA, which is often misdiagnosed as “failed back syndrome” – chronic back pain that fails to respond or grows worse after invasive spinal procedures.

“I think it’s now the number one cause of really severe pain in the country. I don’t think there’s any question about that,” says Tennant. “When I closed my clinic, about 70% of the people in there who had to take high dose opioids had an issue with arachnoiditis.”

Tennant and co-author Ingrid Hollis have written a new book -- “Adhesive Arachnoiditis: An Old Disease Re-Emerges in Modern Times” -- to help doctors and patients recognize the symptoms of AA and to offer hope for treating a disease long thought to be incurable.

Why is AA re-emerging?  Tennant says a “perfect storm” began to appear around the year 2000, when longer lifespans, obesity and sedentary lifestyles contributed to more cases. Lack of exercise has long been associated with chronic back pain.

Arthritis, accidents, repetitive stress injuries and even Lyme disease can also cause degenerative spinal conditions that lead to AA.

“But the real factor contributing is probably sedentary lifestyles. Look at the number of people spending 6 to 8 hours a day in front of a computer or TV screen,” says Tennant. “I’m really trying to bring attention to the fact that people need to be aware that this is something that can happen because of our lifestyles.”

As more Americans sought treatment for back pain, millions were given “interventional” procedures such as epidural steroid injections and spinal surgeries – a trend that appears to have increased as opioids fell out of favor. While most interventional procedures do not result in complications, all it takes is a single misplaced needle or scalpel to damage the spinal cord and trigger a lifetime sentence of AA.

“Everybody wants to blame the epidurals and the surgeries for these problems, but they were only doing these things when there were medical indications for them. And if they do the surgeries and the epidurals, a certain percentage of them are going to get arachnoiditis,” Tennant told PNN.

“There is a risk/benefit to these procedures. If you start going in and operating on the spine or you have half a dozen epidural injections, you start increasing your risk for developing adhesive arachnoiditis. One of the points I want to make is that it is the underlining spinal conditions that are causing the problems. The interventions and the surgeries may accelerate it, but the condition was already set.”

For many years, Tennant was one of the few doctors in the U.S. willing to treat AA patients with high doses of opioids. Intractable pain patients from around the country traveled to California to see Tennant – which led to his home and office being raided by the DEA in 2017. No charges were ever filed against Tennant, but the stress of being investigated led to his retirement from clinical practice.

Tennant now consults with other doctors and is developing new protocols for treating AA with hormones and drugs that reduce pain and inflammation while stimulating nerve growth. His book includes a self-screening test for patients and a list of AA symptoms.

Most essential in any AA diagnosis is a good MRI of the spine. Tennant has a library of over 300 MRI’s sent to him by patients and doctors in dozens of countries — a testament to how AA is re-emerging worldwide.

(Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.)  

Americans More Likely To Get Opioid Prescriptions After Surgery

By Julie Appleby, Kaiser Health News

Americans and Canadians are seven times more likely to fill a prescription for opioid pain pills in the week after surgery than Swedes, says a study published Wednesday, one of the first to quantify international differences.

More than 75% of patients in the U.S. and Canada filled a prescription for opioids following four common surgeries, compared with 11% of Swedes, researchers report in JAMA Network Open. Americans also received the highest doses of opioids.

So, are Americans and Canadians wimpier than Swedes when it comes to pain, or is something else going on?

“There are a lot of tough people in lots of places,” demurred Mark Neuman, an associate professor of anesthesiology at the University of Pennsylvania Perelman School of Medicine and a co-author of the study.

He pointed to a host of other potential factors, from cultural differences to variations in marketing, regulation and long-standing, ingrained prescribing habits.

“It’s possible that in the U.S. people think about opioids as pain relief in a drastically different way than in other places,” he said.

Researchers examined four types of surgeries — minimally invasive types of appendectomy and gallbladder removal, as well as arthroscopic surgery to repair a torn meniscus in the knee and breast tumor removal. All the surgeries occurred from 2013 to March 2016, a time of growing concern about opioid dependence in the United States but before more recent guidelines suggesting that fewer pills are needed following many common surgeries.

Even so, “for the same exact surgery, the same exact tissue trauma, we have seven times more people in the U.S. getting opioids,” said Neuman.

On average, patients in the U.S. filled prescriptions for about 33 pills, each equivalent to 5 milligrams of oxycodone, he said, although the type of drug varied. Swedes who filled prescriptions had an average of 26 pills, while Canadians had 22.

Canadians and Swedes were also far more likely to get codeine or tramadol — painkillers that rely on a different mechanism in the body and are considered weaker types of opioids. Americans were far more likely to get hydrocodone or oxycodone, some of which were heavily marketed to physicians by drugmakers. States and cities are currently suing manufacturers, alleging they misrepresented the drugs’ risks and didn’t properly monitor suspiciously large sales, contributing to the opioid crisis.

The study does not comment on the marketing aspect but did note two factors that might account for some of the difference in the types of drugs prescribed. One is that, during the research period, low-dose codeine was available over the counter in Canada. Tramadol is still not classified as a controlled substance there, although it has been a controlled substance in Sweden since 2007 and in the U.S. since 2014.

“While prescribers may view these so-called weak opioids as safer alternatives, data suggests that both codeine and tramadol have the potential for misuse and life-threatening adverse effects,” the study says.

The U.S. and Canada were chosen because they have the highest per capita consumption rate of opioids in the world. Sweden was picked as a European counterpoint because researchers could obtain detailed prescription information from databases there.

While the study was large — following about 129,000 patients in the U.S. with job-based insurance, 84,600 in Canada’s Ontario province and 9,800 in Sweden — it did have limitations. For one, researchers could not track how many pills patients actually took of those prescribed, or the number of patients who didn’t fill prescriptions they were given. Secondly, they don’t have data on how well patients felt their pain was controlled following surgery.

“It’s possible that in Sweden everyone’s pain treatment is less than in the U.S., although I think that is unlikely,” said Neuman, noting that other studies have shown that patients in the U.S. often do not take all the pills they’ve been prescribed following surgeries.

Fewer Pills Being Prescribed

In addition, for certain types of surgeries, patients do not report greater dissatisfaction when prescribed fewer pills after surgery. Researchers in Michigan, for example, recently reported on what happened after dozens of hospitals recommended new prescribing guidelines — drawn up after studying how many pills patients actually took — following certain surgeries. While recommendations were often for far fewer than 30 tablets, researchers found no increase in reported pain.

Like the group in Michigan, some academic medical centers and other experts have recently issued guidelines calling for fewer pills following many procedures. Those grew out of concern that patients with what is called acute pain — the kind following surgical procedures, for example — were given far too many pills.

An analysis of Medicare data by Kaiser Health News with researchers at Johns Hopkins Bloomberg School of Public Health, for example, found prescribing from 2011 to 2016 exceeded levels now recommended by organizations like Johns Hopkins. For example, Medicare patients took home 48 pills in the week following coronary artery bypass, 31 following laparoscopic gallbladder removal, 28 after a lumpectomy and 34 after minimally invasive hysterectomies.

According to postsurgical guidelines spearheaded by Johns Hopkins last year, those surgeries should require at most 30 pills for a bypass, and 10 pills for minimally invasive gallbladder removal, lumpectomy and minimally invasive hysterectomy.

Postsurgical opioid use can lead to long-term dependency in a small but significant percentage of patients, studies have shown, but unused pills can also be a danger. Those tablets can make their way to the street or fall into the hands of other family members.

Researcher Dr. Chad Brummett, who worked on the guidelines in Michigan, said he thinks prescribing amounts in the U.S. and Canada have likely dipped in recent years, given the increased attention. Still, he cautioned that the amounts likely remain too high in both countries and that the new study illustrates the wide disparity between North America and at least one European country.

“We know that marketing in the U.S. has affected prescribing in all domains, including surgery,” said Brummett. “This study and others show that [surgeons] in the U.S. and Canada can drastically reduce prescribing standards without adversely affecting patient care.”

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

A Pained Life: Stop Terrorizing Doctors

By Carol Levy, PNN Columnist

When I visit chronic pain support groups online, it is almost astounding how often posters turn to talking about the “opioid crisis,” no matter the subject of the initial post. One person wrote that she lives in a town where there is not one doctor who will prescribe opioids, no matter what the diagnosis.

I see comments like, “My doctor won't prescribe them for me anymore even though they were helping,” or “My doctor reduced what I was taking without any effort to ask how I was doing.”

Often they’ll add, “My doctor said he has changed his prescribing practices because of the CDC guidelines.”

Human Rights Watch recommended last year that the CDC guideline be revised because too many doctors were using it as an excuse to abruptly cutoff or taper patients.

“Even when medical providers understood that the Guideline was voluntary, they believed they risked punishment or unwanted attention from law enforcement agencies or state medical boards if they maintained patients at high doses,” Human Rights Watch found.

How does this fear, engendered by political institutions like the CDC and DEA, not fall under the definition of terrorism? This is how Miriam-Webster defines terrorism: 

“The unlawful use or threat of violence especially against the state or the public as a politically motivated means of attack or coercion.”

Granted, the guidelines are not unlawful, but they have had the exact effect of being coercive on many in the medical community. I would also contend that the threat of being arrested and going to prison is a threat of violence.

The guidelines were engendered by the public outcry and governmental concern over the level of opioid overdoses and deaths. The CDC said the guidelines are voluntary, but to many doctors, pharmacies and insurance companies they are enshrined in stone as commandments. They were promulgated as a political response. They were not based on the medical model or the realities of patients in pain.

The point of terrorism is to instill fear. Terrorize one and others will fall in line. The guidelines have had exactly that effect. Accuse one doctor of overprescribing or running a pill mill – even if no charges are actually filed -- and other doctors will change their practices by reducing or refusing to prescribe opioids out of fear of being falsely accused, even when they know doing so will hurt their patients.

And how are patients hurt? Attorney Mark Rothstein, Director of the Institute for Bioethics at the University of Louisville School of Medicine, answers that question.

“Many physicians who previously prescribed opioids now have reduced or discontinued such prescriptions, even for established patients with chronic pain. In some cases, the change in policy was adopted literally overnight,” Rothstein wrote in the American Journal of Public Health.

“With no alternatives for pain control... and the physical and mental pressure of unremitting pain, many patients turned to illicit drugs, especially heroin. The result has been greater addiction, more deaths from overdoses, and an increase in cases of HIV/AIDS and hepatitis from contaminated syringes.”

It is long past time to end what has been interpreted as policy, a policy that hurts patients and the community. It’s time for the terrorism to stop.

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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Does Chronic Pain Affect Memory?

By Ann Marie Gaudon, PNN Columnist

Pain is a complex experience. It not only affects us biologically, but we also experience it cognitively and emotionally. Does it affect our memory? You bet it does.

Chronic pain patients often complain of memory problems and there are numerous studies which confirm these challenges are indeed a reality.

Twenty-four studies evaluating working memory (WM) and/or long-term memory (LTM) in chronic pain groups and control groups were reviewed last year by French researchers. WM was defined as the processing and manipulation of information within a short period of time (a few seconds), while LTM involved the “storage” of knowledge and memories over a long period of time.

Concentration and memory deficits on a daily basis were the most frequently reported cognitive difficulties. Memory complaints included forgetfulness and problems performing everyday tasks and conversations.

Emotional distress common to pain patients, such as depression, anxiety and rumination (the inability to divert attention away from pain), was also found to play an important role in memory difficulties.

One study compared two groups of pain patients who had minor or major memory complaints. Between the two, no significant differences were found with regard to age, gender, education level, marital status, medication use, long-term pain or pain intensity.

However, patients in the major memory complaint group suffered from emotional distress to a significantly greater degree. They also reported a lack of family support and discontent with their social and sexual lives. These were noted as additional daily sources of suffering for this group.

Adding to potential negative effects on memory were comorbidities which many pain syndromes share. Conditions such as depression, anxiety, sleep disturbances, and chronic fatigue could alone or combined affect memory. A major concern expressed was the need to disentangle pain-related cognitive effects from those resulting from these comorbidities.

Medications and Memory

The review really became interesting when it came to medication, because researchers found contradictory results. One European study reported that opioids exerted a negative effect on working memory -- finding a clear association between higher levels of analgesics and perceived memory dysfunction in chronic back pain patients. Some studies confirmed that medication can have a negative effect on memory, but others showed improvements in memory following analgesic treatment. That suggests that effective pain relief may also reverse pain-induced memory impairment.

The researchers concluded it was unclear whether analgesic medications are beneficial or detrimental, because both scenarios were reported.

Age was also identified as an important factor in the relationship between chronic pain and memory, but not in the way you may think. Surprisingly, it was shown that an increase in age did not additionally affect memory performance.

One study reported that gender and age significantly affected memory decline in those suffering from chronic migraine headaches. Cognitive decline in migraineurs was greater among younger individuals, and females showed greater decline during headache intervals than males. It was acknowledged that gender as a factor in pain-related experience is poorly investigated.

Like all reviews, this one has its limitations. There was a “large heterogeneity” of tests within the 24 studies. This diversity of tests did not allow for a suggestion of which memory processes were altered by chronic pain itself. The study populations were also heterogeneous regarding pain etiologies and an assessment of the intensity of pain was not performed.

Studies which included a mix of chronic pain disorders did not provide data on whether specific memory impairments were more frequently observed in specific disorders. The authors suggest there is a need for comparative studies across pain-related disorders in order to determine whether impairments are pain-related or a consequence of other pathophysiological features.

These numerous studies confirmed the memory decline that is often reported by chronic pain patients. Even if these effects are mild, the impact on quality of life could be substantial as they may indeed worsen suffering including depression, anxiety, and limitations on activity.

Researchers suggested that examining memory function should be part of the clinical assessment of chronic pain patients. The spectrum of cognitive difficulties must become acknowledged and understood in order to find ways to overcome them.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Pain Patients Feel About the Opioid Crisis

By Pat Anson, PNN Editor

We received an overwhelming response from readers to Diana’s Franklin guest column on how the opioid crisis has affected her. Diana has suffered from scoliosis since she was a child and now has degenerative disc disease. For many years oxycodone helped Diana manage her chronic back pain, but she can no longer get it.

Diana considers herself collateral damage of a crisis she had nothing to do with.

“The government stopped allowing my doctor to prescribe any opioids, leaving many of his patients, including myself, without any pain medication at all,” Diana wrote.

“I can hardly get up to go across the room without help and every step causes extreme pain. I can't think straight and wind up exhausted because every ounce of energy I have goes to fighting the pain.”

Diana’s story hit home with hundreds of readers who left comments or sent us emails.

“Just recently my doctor said that he was gonna have to stop prescribing me my opioid pain medication,” wrote Jeffrey Ticich, who suffers from scoliosis, stenosis, a herniated disc, and recently had his right leg amputated.

“When my doctor takes my opioid pain medication away from me, I will start looking for a burial plot. I have suffered most of my life with severe chronic acute pain and I will not suffer anymore. There has got to be a solution for patients that are suffering and not abusing their opiate pain medication.”

“I am a disabled law enforcement officer. I was hurt in a car crash years ago responding to a rape in progress. The only way I've had any quality of life is with the pain medication,” wrote a man who didn’t want his name used. “Life has been really rough since (they) restricted pain medication. Also think of all the injured veterans. What a way to say thanks for your service.”

“I've suffered with neuropathy for almost 15 years. It's very painful, especially in my lower legs. I find it difficult to even walk to the mailbox and back,” said Leslie Rowland, who is 70. “I too am a case of collateral damage when it comes to pain meds. I've loved to fish all my life but had to give it up this year due to the pain. Please, someone with a voice needs to be heard for people like me. All I want is not to be in pain 24/7 and to have a decent quality of life.”

CDC Guideline Unchanged

Many pain patients thought their voices were finally being heard last April, when CDC Director Robert Redfield, MD, acknowledged that many insurers, pharmacies, states and practitioners were implementing the agency’s 2016 opioid guideline as a mandatory policy.

“The Guideline does not endorse mandated or abrupt dose reduction or discontinuation, as these actions can result in patient harm. The Guideline includes recommendations for clinicians to work with patients to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy,” said Redfield.

“CDC is working diligently to evaluate the impact of the Guideline and clarify its recommendations to help reduce unintended harms.”

Five months later, not a word of the CDC guideline has changed. And many doctors, insurers and pharmacies are still reducing opioid dosages or cutting off patients.   

“My pain doctor keeps reducing my pain medicine dose to the point that it's almost ineffective, thanks to our government's unrealistic guidelines. And instead of going after the real culprits of the problem (the dealers), they're putting the blame on the doctors,” wrote Richard Parrish. “Those of us who really need help are paying the price for our inept government's prescribing guidelines. THIS HAS GOT TO STOP!”

“I have been in pain since last October from neck pain that travels to the back of my ear from whiplash,” wrote Lois Henkin. “I have been to all kinds of doctors, had physical therapy, had facet joint shots, cervical steroid shots, etc. with no change in the pain.

“I was put on gabapentin for the pain, with no results. I switched to Tramadol, which works, but now because of the opioid crisis, I am not even given 1 pill a day. This is not fair to people that have severe pain. Just limit the meds to the drug addicts.”

Many readers, like Debra Christian, said they felt abandoned and misunderstood.

“Unless you live in chronic pain, then you don't understand it, nor do you know what it does to a person and how it changes the person they were,” Christian wrote. “We don't have lives. We’re just existing.

“This is a problem. This is a travesty. This is a financial burden. And I am an American who wants to still work, but I can’t. It will be up to me to fight with whatever strength I have left, if I want any quality from my life that I and so many others deserve.”

In PNN’s recent survey of nearly 6,000 patients, over 85 percent said the guideline has made their pain and quality of life worse. Nearly half say they have considered suicide because their pain is poorly treated.

Is Your Pain Medication Effective or Was It Placebo Effect?

By Dr. Lynn Webster, PNN Columnist

Most of us have been prescribed a medicine at some time in our lives. And if we got better, we probably assumed it was because the medication was effective.

However, this may not have been completely true. A positive result following the use of a medication may have little to do with the drug.

If you're a M*A*S*H fan, you may have seen an episode called "Major Topper." In that show, Colonel Potter suggests they treat people in pain with a placebo because there is a morphine shortage — and it works. Did that mean their pain wasn’t real?

Placebos Work So Well They Can Fool Researchers

One of the greatest challenges in evaluating the efficacy of medical treatments is to minimize what is known as the placebo effect. The benefit provided by a treatment during clinical trials may appear to be significant. However, the treatment may fail to be approved by the FDA if the benefits for patients who receive a placebo are too similar to those who receive active treatment.

Drug approval requires that active treatment results are meaningful and differ statistically from placebo results, even though both may provide similar outcomes when compared to a baseline. 

I study drugs for their potential to be abused— what the FDA calls a Human Abuse Potential (HAP) study. People who participate in HAP studies must admit they recreationally use the class of drug which is undergoing evaluation, and must report a strong preference for the drug when compared to a placebo.

Most people would be surprised to learn that as many as 50% of the test subjects who commonly use a drug recreationally cannot adequately differentiate between the active drug and the placebo. Even more surprising is that one in five subjects report a much greater preference or “getting high" experience with the placebo than with the active drug.

There are several reasons for this. It could be that they don’t realize researchers know which drug they received and in what order. They are simply hoping to guess correctly because they want to participate in the study. Or the subjects may be anticipating an effect that they want (to get high) and that anticipation creates the effect in the reward center of their brain without even using an active drug.

This effect is not limited to drugs. As a principal investigator in a study, I surgically implanted wires at the base of the occiput (the skull) to stimulate occipital nerves in an attempt to prevent or treat migraine headaches. Although all subjects underwent the operation and were implanted with the wires, only half received active stimulation. The other half were programmed with a sham pattern of stimulation.

When the study was unblinded, we discovered that almost everyone in both groups (active and placebo) derived remarkable, but similar, relief from the therapy.

We concluded it was their expectation that an invasive procedure would be therapeutic that provided the positive outcome. Unfortunately, the positive results of both treatment and placebo meant the new procedure could not be approved on the basis of our testing.

Placebos Work Even When People Know About Them

Ted Kaptchuk, a Harvard Medical School professor of medicine, is the director of the Program in Placebo Studies at the Beth Israel Deaconess Medical Center. In a recent episode of NPR's "Hidden Brain" podcast, Kaptchuk recounts similar results when testing the placebo effect.

However, his research added a new twist. Kaptchuk wanted to see what would happen if he used "radical honesty" to determine the potential of the placebo effect. Instead of tricking patients into believing they may receive an actual treatment instead of a placebo, Kaptchuk told his subjects they would receive a placebo. In other words, no actual drug would be administered to subjects and they were all aware of that.

Surprisingly, he found that a placebo could still work. "Hidden Brain" host Shankar Vedantam also talked to Linda Bonanno, who participated in Kaptchuk's study. Bonanno explained that Kaptchuk gave her a placebo to treat her irritable bowel syndrome and it eased the agonizing pain she had been living with for years.

The pain did not return until Kaptchuk stopped "prescribing" the placebo. For Bonanno, what seemed to help the most was the trusting relationship she had with Kaptchuk. The warmth and caring of her health care provider may have been enough to mitigate her pain.

As we know, pain isn't just a physical experience. It is a complex emotional experience that has psychological, social and spiritual elements. If a doctor's empathy, warmth, listening and caring can ease a patient's pain, that shouldn’t call into question whether the patient's pain was real. It simply makes the case that a trusting relationship with a healthcare provider is as important for successful treatment as the medication or procedure itself.  

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth” and co-producer of the documentary, “It Hurts Until You Die.” You can find him on Twitter: @LynnRWebsterMD.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Opioid Overdoses Drop, But Fentanyl Crisis ‘Likely to Get Worse’

By Pat Anson, PNN Editor

Opioid overdose deaths fell by nearly 5 percent in 25 U.S. states last year, according to a new analysis from the Centers for Disease Control and Prevention -- one of the first reports to document a significant decrease in opioid overdoses.

The 25 states covered in the report are participating in the CDC’s State Unintentional Drug Overdose Reporting System (SUDORS), which tracks overdose deaths through toxicology, medical examiner and coroner reports. SUDORS is considered more reliable than other databases because it provides more details on the types of drugs involved – both legal and illegal.

Opioid overdoses fell overall by 4.6% in the first six months of 2018, driven in large part by a 6.6% decline in deaths involving prescription opioids. The CDC found that less than a third (28.7%) of the overdoses were linked to opioid pain medication. Most overdoses involve illicit drugs.

“Prescription opioid deaths stabilized nationally from 2016 to 2017, and the number of opioid prescriptions filled has been decreasing for several years, as efforts to reduce high-risk prescribing have increased. Findings from this report suggest these efforts might have fostered decreases in prescription opioid deaths without illicit opioids,” researchers said.

While the data about prescription opioids is encouraging, the report paints a grim picture about the abuse of other substances. Nearly 63% of the opioid overdoses involved a non-opioid drug such as cocaine, methamphetamine or benzodiazepines.

Overdoses linked to illicitly manufactured fentanyl (IMF) rose by 11.1% in 2018, with fentanyl or a fentanyl analog involved in nearly nine out of ten opioid deaths.

Fentanyl is a synthetic opioid 50 to 100 times more potent than morphine. Fentanyl analogs such as carfentanil can be even stronger. Most drug users have no idea what they’re getting, because fentanyl is often added to heroin, cocaine and other drugs to boost their potency, or used in the production of counterfeit medication.

Fentanyl Dominates Black Market

A new report from the RAND corporation, a nonprofit research organization, suggests the fentanyl problem will be hard to eradicate. Researchers looked at synthetic opioid markets in the U.S. and other parts of the world, such as Canada and Estonia — where fentanyl first appeared 20 years ago..

“Once fentanyl gains a foothold, it appears capable of sweeping through a market very quickly,” wrote Bryce Pardo, lead author of the study and an associate policy researcher at RAND. “We know of no instance in which fentanyl attained a dominant position in the marketplace and then lost that position to another less potent opioid. To date, fentanyl’s spread appears to be a one-way ratchet.

“One of the most important — and depressing — insights in this analysis is that however bad the synthetic opioid problem is now, it is likely to get worse before it gets better.” 

RAND researchers say the surge in fentanyl and other synthetic opioids is driven by supply-side factors more than user demand. China's pharmaceutical and chemical industries are poorly regulated, allowing producers to cheaply produce fentanyl and ship it to buyers anywhere in the world. Mexican drug traffickers smuggle most of the fentanyl that enters the U.S., although some of it is shipped in the mail or by commercial delivery services.

DEA IMAGE

Unconventional strategies may be needed to address the fentanyl crisis. The RAND researchers advocate several innovative approaches, such as supervised drug consumption sites, creative supply disruption, drug product testing, and heroin-assisted treatment, which is available in some countries. Sweden has developed an online market with fentanyl analogs sold primarily as nasal sprays.

"It might be that the synthetic opioid problem will eventually be resolved with approaches or technologies that do not currently exist or have yet to be tested," said Beau Kilmer, study co-author and director of the RAND Drug Policy Research Center. "Limiting policy responses to existing approaches will likely be insufficient and may condemn many people to early deaths."

RAND researchers say there is little reason to believe that tougher sentences, including homicide laws for low-level drug dealers and couriers, will make a difference.

Last week the Mexican navy found over 25 tons of powdered fentanyl on a Danish ship docked at a Mexican port, one of the largest fentanyl shipments ever seized. The shipment originated from Shanghai, China.

Chinese officials are pushing back on claims that they’re not doing enough to stop fentanyl exports, saying the U.S. needs to stop blaming other countries for its own drug problems.

“A small group of people produce fentanyl illegally in China and mail them to the U.S. and other regions, driven by the exorbitant profit and at the request of criminals overseas, including those in the U.S. The Chinese government has zero tolerance for this. Once we find clues, we chase them down and spare no one,” Liu Yuejin, deputy head of the China National Narcotics Control Commission, told Bloomberg.

“I think the most important thing for U.S. politicians is to face the reality: What’s the root cause of such large-scale abuse of fentanyl in the U.S.? They need to find out and come up with solutions.”  

Tramadol Raises Risk of Low Blood Sugar

By Pat Anson, PNN Editor

Patients who take the opioid tramadol are at greater risk for developing hypoglycemia – a condition caused by very low blood sugar -- than those taking other pain medications, according to researchers at the University of California San Diego.

Prescriptions for tramadol – a synthetic opioid sold under the brand names Ultram and ConZip – have been increasing because it is perceived as a “safer” opioid with less rick of addiction. Tramadol is currently ranked among the top five prescribed opioids in the United States.

As tramadol use has grown, so have documented cases of adverse effects such as dizziness, nausea, headaches and constipation — all common side effects of opioids.

The link to hypoglycemia was discovered by accident when researchers at UCSD’s Skaggs School of Pharmacy and Pharmaceutical Sciences analyzed more than 12 million reports from the FDA’s Adverse Event Reporting System from January 2004 to March 2019.

“The impetus was the recent dramatic surge in tramadol popularity and prescriptions,” said Tigran Makunts, PharmD, first author of the study published in Scientific Reports. “We wanted to have an objective data-driven look at its adverse effects and bumped into a dangerous, unlisted and unexpected hypoglycemia.”

The researchers compared adverse events involving tramadol to those linked to other widely prescribed opioids and non-opioid medications, such serotonin and norepinephrine reuptake inhibitors (Cymbalta, Effexor XR) and NMDA receptors (ketamine and memantine).

Only tramadol produced a significant risk of developing hypoglycemia. There was a 10-fold greater risk of hypoglycemia using tramadol than virtually every other opioid except methadone, which is typically used to treat addiction.

Hypoglycemia is often related to the treatment of diabetes, but can also occur in persons without diabetes. Left untreated, hypoglycemia can lead to serious complications, such as neurocognitive dysfunction, vision loss, greater risk of falls and loss of quality of life.

“The takeaway message is to warn physicians about the likelihood of low blood sugar, in particular if the patient is predisposed to diabetes,” said senior author Ruben Abagyan, PhD, a professor of pharmacy at UCSD.

“It may be beneficial to monitor glucose levels when initiating tramadol or methadone in both diabetic and non-diabetic patients. Alternative opioids or non-opioid pain medications may be safer to use with patients at risk of hypoglycemia or any complications associated with hypoglycemia.”

Tramadol was classified in 2014 by the DEA as a Schedule IV controlled substance, a category that means it has a low potential for abuse. A recent study, however, by Mayo Clinic researchers found that patients who took tramadol for post-surgical pain have a slightly higher risk of prolonged use than those taking oxycodone or other short acting opioids.

In 2017, the FDA banned the use of tramadol in children under the age of 12, citing a handful of cases where children died or had serious breathing problems after using the drug.

Why Getting a Diagnosis Matters

By Crystal Lindell, PNN Columnist

For me, finding out I had a genetic condition with no cure was, strangely, liberating. 

When I walked out of the doctor’s office, I went to lunch at Chipotle with my mom to celebrate. We splurged for the guac. 

No, I wasn’t ever going to get better — but at least I wasn’t crazy. 

It took about five years of debilitating chronic pain in my ribs, two trips to the Mayo Clinic, appointments at three different university hospitals, and countless specialists before I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) in March 2018. 

And you know how it happened? It wasn’t some magical doctor who finally figured it out all out. No. It was my readers. A few of them emailed me suggesting I check into it, so I asked my doctor about it. He referred me to a pain specialist who diagnosed me within a month. 

I’m not going to pretend that finding out I had hEDS was all just a pile of happy pills though. I went through an extremely rough month of depression and grief as I worked to grapple with everything that came with that life-long diagnosis. There’s no cure. My body will probably just get worse over the years. And having children would be extremely risky. 

It was a loss, for sure, but it also was a gain in so many ways to finally know what I was fighting — and for others to know as well. It felt like it went from, “She’s making it all up and probably just wants pain meds,” to “She’s here legitimately,” in my medical chart. That alone was life changing. 

And based on the Facebook and Reddit patient groups I follow, I’m not alone in any of this. Hundreds, if not thousands, of people seem to post about their search for a diagnosis, and the validation they feel once they’ve gotten it. 

Knowing your enemy’s name makes it much easier to do battle. 

And yet, doctors seem to be so far behind on this. 

Here are some common myths I’ve heard both from my own doctors, and via patient stories. 

Myth: A diagnosis won’t change how the symptoms are treated. 

Fact: This simply isn’t true. For me, hEDS means I can react differently to medications and treatments. For example, I should avoid chiropractors and only see specially trained physical therapists, because if I don't, I could be seriously injured. Not to mention the fact that it also means I have additional risks that can be regularly tested for, such as issues with my heart. And the risks related to surgery also change. Be skeptical anytime someone tries to tell you that more information is a bad thing.  

Myth: A diagnosis will increase insurance rates. 

Fact: The U.S. requires insurance companies to cover pre-existing conditions now, so this simply isn’t true. 

Myth: Seeking a diagnosis means you just want to spend your days blaming everything on your condition. 

Fact: Trust me, nobody “wants” to blame everything on a genetic condition. But if a genetic condition is to blame, then it’s not crazy to connect the dots. A diagnosis also helps you see dots you didn’t even know where there.

Myth: A diagnosis doesn’t change anything.

Fact:  A diagnosis does so much more than get noted in your medical history. It also can help you apply for programs like Social Security Disability and medical marijuana cards. And maybe even more importantly, it can help you explain yourself to friends, colleagues and family.

When you show up late for a meeting because “your ribs hurt,” people give you the side-eye and then leap into a diatribe about how their back hurts sometimes and they still manage to get there on time. But if you show up late and explain that you have a rare disease called EDS, they usually rush to offer sympathy and understanding. 

So what do doctors mean when they try to tell you that a diagnosis doesn’t matter? They mean, it doesn’t matter to them. It’s similar to when they say a surgery is going to be easy, they mean it’s going to be easy for them.

But we aren’t living for them. We’re living for us. So keep fighting the good fight. Keep insisting that you get the right diagnosis. And know thy enemy.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile Ehlers-Danlos syndrome. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Johnson & Johnson Verdict Will Harm Chronic Pain Patients

By Barby Ingle, PNN Columnist

This week an Oklahoma judge ruled that Johnson & Johnson helped fuel the state’s opioid crisis and ordered the company to pay $572 million in damages.

I watched the entire 7 weeks of the Oklahoma trial and hoped that Judge Thad Balkman would get this right. I do not believe that he did. Johnson & Johnson may have the funds available to pay such a big penalty, but what about the healthcare providers, pharmacies, insurers, FDA, DEA and drug abusers who also played a role in causing the crisis?

This verdict shows that pain patients in America are once again being overlooked for the lives of drug addicts. Both problems need to be addressed: addiction and chronic pain.

I am a chronic pain patient who has been mistreated, undertreated, overtreated and misdiagnosed over the years. Do I think the $572 million is going to make a difference in my care or other pain patients? No, I don’t. We have already seen patients commit suicide because they were taken off opioid medications that were helping them cope with life and manage their pain.

The insurance companies won’t cover the other treatments and for some patients who have tried those treatments and failed, opioids were the only thing giving them quality of life.

Now we see a rise in the suicide rate and overdoses are still high. And where is the problem really coming from? Street drugs.

How is a manufacturer of opioids held liable, but people who chose to abuse drugs are not held accountable? Is it because they can’t make money off poor people?

The Oklahoma verdict is not holding the right people accountable by any reasonable standard. It distorts the public nuisance law beyond recognition and will take away more options and choices from pain patients. This is only the start. Nearly 2,000 other opioid lawsuits are awaiting trial.

Why force these pharmaceutical companies into settlements? Why force an industry that saves millions of lives to do this? We need the industry to keep working on treatments. Less than 5% of the 7,000 rare diseases have any treatment options available. Are these lives less valuable than addicts’ lives? We need to stop forsaking one life for another.

I for one hope that Johnson & Johnson appeals for the sake of the pain community and for the sake of all who need pain medications -- be it for an acute situation such as kidney stones, a shattered pelvis or a chronic illness such as Reflex Sympathetic Dystrophy, arachnoiditis, sickle cell or lupus.

I don’t believe that the pharmaceutical industry started, fueled or conspired to create the largest public health crisis of our time. I don’t believe there is an opioid epidemic. Addiction does affect millions of people but in many cases the help they need has not been provided. Billions of dollars in federal funding, including grants from President Trump’s opioid initiatives, haven’t been fully set up or spent to make a difference.

I believe it's up to the providers and pharmacists to tell us about the risks associated with opioids. They do in most cases. We as chronic pain patients want to have all options on the table. It's going to take a multi-modal approach that will have to start with human behavior and people being responsible for their own actions.

Insurance companies are already using tactics such as step therapy, prior authorization and stall tactics to prevent people from getting proper treatment. This is being done to both the addiction and chronic pain communities. It saves insurers millions of dollars, yet they are not being held accountable for care that is being denied.

For those in pain it's important to have opioids available and it’s not a simple matter of pharmaceutical companies being all bad and responsible for everything that happens to society.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Study: Cannabis Flowers Rich in THC More Effective for Pain Relief

By Pat Anson, PNN Editor

Another study by researchers at the University of New Mexico suggests that tetrahydrocannabinol (THC) -- the psychoactive ingredient in marijuana – should not be ignored as a treatment for chronic pain.

In an unconventional survey of nearly 3,000 cannabis users, researchers found that those who used whole cannabis flowers or buds rich in THC reduced their pain levels an average of three points on a 0 to 10 pain score. Those who ingested cannabidiol (CBD) did not experience similar pain relief.

The researchers relied on information collected from the Releaf App, a mobile software program they created that allows cannabis users to self-report their experiences using different cannabis products, including flowers, edibles, tinctures and ointments.. Their findings are published in the journal Complementary Therapies in Medicine.

"Perhaps the most surprising result is just how widespread relief was with symptom relief reported in about 95 percent of cannabis administration sessions and across a wide variety of different types of pain," said Xiaoxue Li, PhD, an assistant professor of economics at UNM.

"Cannabis likely has numerous constituents that possess analgesic properties beyond THC, including terpenes and flavonoids, which likely act synergistically for people that use whole dried cannabis flower," added Jacob Miguel Vigil, PhD, a professor in UNM’s Department of Psychology. "Cannabis offers the average patient an effective alternative to using opioids for general use in the treatment of pain with very minimal negative side effects for most people."

The authors caution that cannabis use does carry the risk of addiction and short-term impairment in cognitive and behavioral functioning.

“Cannabis with high THC also causes mood elevation and adjusts attentional demands, likely distracting patients from the aversive sensations that people refer to (as) pain," explains Vigil.

Previous studies using data from the Releaf app found that cannabis also provides relief from insomnia, seizures, depression, anxiety and fatigue. Despite conventional wisdom, THC was found to be more important than CBD in generating therapeutic benefits.

A significant weakness of the app is that it relies on cannabis users to subjectively self-report their experiences outside of a clinical setting. There is also no way to measure the quality or quantity of the cannabis they are ingesting.   

Two-Thirds of Americans Accept Cannabis as Pain Treatment   

Another new survey – conducted by the American Society of Anesthesiologists (ASA) – found wide acceptance of cannabis as a possible treatment for pain. The online survey 1,005 adults was conducted earlier this month.

More than two-thirds of those surveyed said they have used or would consider using cannabis to manage pain. Nearly three-quarters of millennials fall in that category. Two-thirds of Gen Xers and baby boomers expressed interest in cannabis, with 25% of Gen Xers and 18% of baby boomers saying they have used cannabis for pain.

Most of those who expressed interest in using cannabis products believe they are safer or have fewer side effects than opioids or other medications.

Other key findings:

• 57% believe more cannabis research is needed

• 34% don't feel a need to discuss cannabis use with their doctor

• 13% believe no other type of pain management works for them

• 40% wrongly believe CBD products sold at grocery stores, truck stops, health food stores and dispensaries are approved by the FDA.

The ASA recently endorsed two bills that seek to expand research on CBD and marijuana: the Medical Cannabis Research Act and the Cannabidiol and Marihuana Research Expansion Act. The bipartisan bills would increase the number of manufacturers allowed to grow cannabis for research purposes and streamline the application process.

“As experts in managing pain, physician anesthesiologists are concerned about the lack of research regarding the safety and effectiveness of marijuana and cannabinoids," said ASA President Linda Mason, MD.

Oklahoma Judge Orders J&J to Pay $572 Million in Damages

By Pat Anson, PNN Editor

In a precedent setting case, an Oklahoma judge has ruled that Johnson & Johnson is partly responsible for fueling Oklahoma’s opioid crisis and ordered the health care giant to pay $572 million in damages.

“The opioid crisis has ravaged the state of Oklahoma and must be abated immediately,” said Cleveland County District Judge Thad Balkman, reading his decision aloud from the bench.

Balkman said J&J concocted a ‘marketing scheme” for opioid pain medication that overstated the drugs’ effectiveness and underplayed their risks. The company’s subsidiary, Janssen Pharmaceutical, produced less than one percent of the opioids prescribed in Oklahoma, but supplied 60% of the ingredients in painkillers sold by other companies.  

“They developed and carried out a plan to directly influence and convince doctors to prescribe more and more opioids, despite the fact that defendants knew increasing the supply of opioids would lead to abuse, addiction, misuse, death and crime,” the judge said.

Oklahoma had asked for $17.5 billion from J&J to pay for addiction treatment, emergency care, law enforcement and other services needed to address the opioid crisis. J&J said it would appeal the judges “flawed” ruling.

"Janssen did not cause the opioid crisis in Oklahoma, and neither the facts nor the law support this outcome," Michael Ullmann, Executive Vice President and General Counsel for J&J, said in a statement. “This judgment is a misapplication of public nuisance law that has already been rejected by judges in other states.

"The unprecedented award for the State's 'abatement plan' has sweeping ramifications for many industries and bears no relation to the Company's medicines or conduct." 

Balkman’s ruling is not legally binding on any other court, but as the first opioid case to go to trial, it is expected to have a significant impact on negotiations to resolve nearly 2,000 lawsuits filed by states, cities and counties against opioid makers, distributors and pharmacies. Many of those cases have been consolidated before a federal judge in Ohio.

Oklahoma previously reached a $270 million out-of-court settlement with Oxycontin-maker Purdue Pharma and an $85 million deal with Teva Pharmaceutical. Endo International and Allergan recently agreed to pay $10 million and $5 million respectively to two Ohio counties to avoid going to trial.

Compared to the cost and bad publicity that J&J went through defending itself in Oklahoma, those settlements look prescient.

As PNN has reported, three law firms that acted as lead outside counsel for Oklahoma stand to collect 25% of the damages and penalties awarded to the state. Oklahoma’s star witness, anti-opioid activist Dr. Andrew Kolodny, testified that he was paid $500,000 for his services at a rate of $725 an hour.

Cost of MS Drugs Soars Despite Competition

By Pat Anson, PNN Editor

The cost of multiple sclerosis drugs has soared over the past decade for Medicare patients to nearly $76,000 per patient annually, according to a new study published in JAMA Neurology.

"We're not talking about patients without health insurance here," said senior author Inmaculada Hernandez, PharmD, assistant professor of pharmacy at the University of Pittsburgh. "We're talking about insured patients, under Medicare. Still, they are paying much more for multiple sclerosis drugs than they were 10 years ago."

Hernandez and her colleagues looked at Medicare Part D claims data from 2006 to 2016 for disease modifying therapies (DMTs) that reduce the frequency and severity of multiple sclerosis (MS) flare-ups. MS is a chronic and progressive disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision, and fatigue.

Some of the most widely used DMTs for treating MS are Copaxone, Tecfidera and Avonex. Although there’s a fair amount of competition between the drugs -- the FDA has approved 19 DMTs for MS – prices have risen in tandem for nearly all of them.

The annual list prices of the drugs more than quadrupled over the 2006-2016 study period, far outpacing inflation.

Not only did the researchers find steep increases in list prices -- the starting point before rebates, coupons or insurance kicks in -- but also in the ultimate costs to both Medicare and its beneficiaries.

"We wanted to see how increases in list prices translated to increases in out-of-pocket spending, and we discovered that actual price increases do get passed down to patients, and that can negatively affect access," said Hernandez.

Alvaro San-Juan-Rodriguez

When it was first introduced by Biogen in 1996, Avonex had an annual list price of about $8,700. Two decades later, Avonex costs nearly $76,000 per patient per year.

“The pharmaceutical and biotechnology industries claim that the high prices reflect the expense of research and development and need to incentivize continued innovation. These claims are never backed up with transparent data,” said Daniel Hartung, PharmD, and Dennis Bourdette, MD, in an editorial in JAMA Neurology. “These drugs have long since recouped any cost of drug development, yet their prices have continued to rise.

“What is driving this increase is uncertain. However, the simplest explanation is that pharmaceutical and biotechnology companies increase prices because they can, they do it to increase their profit margins, and there are few limits on what they can charge.”

Hartung and Bourdette say neurologists who prescribe DMTs should be more aware of their cost. A generic DMT made by Mylan, for example, sells for about $2,000 a month, compared to a branded version that sells for about $6,000.  

Chronic Pain Patients Are Collateral Damage of the Opioid Crisis

By Diana Franklin, Guest Columnist

I have been watching the news a lot lately. It seems like much of the coverage is devoted to the opioid crisis, and rightfully so. But I feel it’s a little one-sided.

I fully understand the issue with illegal drugs, doctors overprescribing, pharmaceutical companies flooding markets with powerful pills, and how all of that is a very big problem. I hate that so many are addicted and something needs to be done to stop it.

However, I also know that there are law abiding citizens in serious, legitimate pain that are getting swept up in the chaos and suffering because of it. These people feel like they're being punished and forgotten about. I know this, because I am one of them.

I had severe scoliosis as a kid. When I was 12, I was told it was progressing so quickly that I could end up bedridden or possibly dead by the age of 21. I had to have surgery to straighten and fuse a large portion of my spine with metal rods. Luckily, the surgery was a success.

When I was in my 30’s, one of the discs that hadn't been fused in my lower back slipped. A doctor did two laminectomies, where they shaved down the back side of the vertebrae. A year later, I had another surgery on the cervical spine in my neck.

These surgeries may have fixed the problem with the discs, but unfortunately the damage was done and I was left with severe nerve damage and in constant pain.

DIANA FRANKLIN

I saw a pain management specialist and tried several different pain medications until I found something that helped. I was still very limited in what I could do, but I was at least able to get out of the house on occasion, though I was unable to work and had to go on disability.

While battling these health issues, I lost my husband and had to find a way to survive with my two sons. This was made even more difficult when my pain started getting worse. I got an MRI which revealed that I also have degenerative disc disease. There is very little space between the few discs in my lower back that aren't fused, meaning that bone is rubbing on bone, crushing the nerves and causing tremendous pain.

With oxycodone, I was still in a great deal of pain, but as long as I didn't get up and do too much, I could push through the day. I always took less than needed and tried hard to manage the pain any other way before I took my pills. I had regular drug tests, per my doctor’s protocol, to ensure that I wasn't taking too much.

I have seen this doctor for 20 years and he always went above and beyond, with all of his patients, to ensure that he only gave them what they need to control their pain without becoming addicted.

Recently, the government stopped allowing my doctor to prescribe any opioids, leaving many of his patients, including myself, without any pain medication at all. Due to the pain and nerve damage, I have trouble walking, my hands and arms will hurt and swell up, and my back feels like it's being crushed. I have severe migraines and often end up crying due to the pain.

I can hardly get up to go across the room without help and every step causes extreme pain. I can't think straight and wind up exhausted because every ounce of energy I have goes to fighting the pain.

Because there is so much damage to my spine, managing the pain is my only real option. The few other options I have aren't covered by insurance and there’s no guarantee that they will help. They could possibly make my situation worse.

My life has gone from enjoying my kids and young grandkids to being essentially trapped in my recliner, not knowing how much longer I can live with the pain.

I have been strongly against illegal drugs all my life. I believe that the government should do what it can to make sure criminals aren't getting their hands on these medications and crackdown on doctors that overprescribe them.

However, by taking pain medication away from everyone, they have made me collateral damage. Patients like me, even those with cancer, are being left without any pain medication at all. Some have committed suicide because they just can't handle the pain.

I am trying hard to fight against thoughts like that, but it is difficult when every moment is spent in excruciating pain. Something has to be done to allow doctors to prescribe pain medicine to those who truly need it, without fear of government prosecution. Put in strict regulations, drug testing and criteria that people have to meet, so that those in legitimate pain can still be given the lifesaving pain relief that they desperately need.

I don't have all the answers, but I know that something needs to be done and we need to be heard. Please, don't sit by as so many suffer. People like me fight our battles every day just to survive, but it gets harder every second that we're in blinding, unthinkable pain.

People talk all the time about the people who die in overdoses. That is indeed a tragedy, but what no one wants to talk about are the people dying simply because they can't cope with the amount of pain that they're in. We need a solution and we need it now! More than anything, we need a loud voice to be heard above all the other shouting that seems to be surrounding this issue.

Please help me get the word out, not just about my story, but so many other stories out there of people in pain. I want as many people as possible, especially lawmakers, to see this and understand what we go through. Please like and share with everyone you can.

Diana Franklin lives in Texas.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Online Censorship of Health Information Is Authoritarianism

By A. Rahman Ford, PNN columnist

Critics of stem cell therapy have taken their censorship campaign to another frightening and paternalistic step up the authoritarian ladder. Not only does it threaten freedom of speech, freedom of association and freedom of health, but now it’s targeting poor people.

The campaign to stop people from accessing stem cell therapy (SCT) has been building for some time. First there was fearmongering to scare patients away from SCT, followed by a push to have regulatory agencies increase enforcement.  Then came a call for social media platforms like YouTube to censor patient testimonials about the benefits of SCT.

Now, in a disturbing turn, critics are pressuring fundraising platforms like GoFundMe to purge campaigns that seek to raise funds for SCT.

In a recent op/ed in the BBC’s Future, London-based neurologist Dr. Jules Montague argues that crowdfunding sites like GoFundMe need to crackdown on patients seeking to raise money for stem cell treatments. Montague says their testimonials omit the “unfounded hype” and potential risks associated with SCT. These “bad actors,” according to Montague, should be banned to “halt the spread of misinformation.”

To propose that crowdfunding sites be tasked with choosing winners and losers in the marketplace of ideas, and to impose quasi-criminal sanctions on poor patients is to enter a decidedly dictatorial dimension. “Bad actor” is a legal term of art, and should be left to the jurisdiction of a court of law or other legislatively-authorized tribunal. That’s how things work in a democracy.

On the other hand, authoritarian regimes censor whatever speech they see fit, arbitrarily and without explanation. As it pertains to crowdfunding sites, what we absolutely do not need is unelected and unappointed “experts’” selling misplaced fears.

The question that should be asked is why do the SCT critics fear the agency of the people? Is the notion that people can make their own medical decisions – and accept the risks of those decisions – without “expert” stewardship, consultation or approval such a terrifying prospect?

Ultimately, this “purge and censor” line of argument represents a slippery slope that is distinctly anti-democratic. And at the bottom of the slope, are piled the bodies of the sick, whose desperation is fueled by the abject failures of mainstream medicine.

Equally disturbing is the fact that stem cell censorship on fundraising platforms would be a clear and unmistakable attack on the poor. Poor people are the ones who need to raise money, not the wealthy. The average person doesn’t have the finances of a star athlete like Max Scherzer or a celebrity actress like Selma Blair to get stem cell treatment. Instead, they have to rely on the generosity of others, a generosity that crowdfunding sites facilitate. To censor SCT fundraising is to not only censor a voice, but a livelihood, and maybe even a life itself. Poor people should not be punished for being poor.

Does Dr. Montague really expect GoFundMe and other sites to establish their own internal ethics boards and become the online sentinels of poor people’s health? There is no defensible or rational justification for preventing chronically ill poor people from raising the money they need to save their own lives.

Online Censorship Increasing

Unfortunately, online censorship of alternative health information is not new. In fact, it’s increasing. Facebook recently deleted dozens of alternative health pages without any notice or explanation. Some, such as Natural Cures Not Medicine and Just Natural Medicine, had millions of followers.

GreenMedInfo was kicked off Pinterest for violating its “misinformation policy” which bans “false cures” for chronic illnesses. And who helps Pinterest determine what health advice is false?

“We rely on information from nationally and internationally recognized institutions, including the CDC and WHO, to help us determine if content violates these guidelines,” Pinterest explained in an email.

Recent changes to Google’s Broad Core Algorithms have also suppressed search results for alternative medical information. As a consequence, hundreds of health websites have experienced drastic drops in traffic, including Pain News Network. One website, owned by alternative health advocate Dr. Joseph Mercola, lost about 99% of its traffic.

“Big Tech has joined the movement, bringing in a global concentration of wealth to eliminate competition and critical voices,” Mercola warned. “This year, we’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

“We’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

— Dr. Joseph Mercola

Even Wikipedia, which relies on open source editing for its content, has succumbed to the “deletionism” of alternative health information.

“We believe that organised skeptic groups are actively targeting Wikipedia articles that promote natural, non-drug therapies with which they disagree,” says the Alliance for Natural Health. “The new trick of these editors is to rewrite or entirely remove pertinent information from such articles or, worse still, delete entire articles altogether.”

It now appears that stem cell therapy is the next hooded subject to be escorted into the Star Chamber of deletionism. The call for fundraising censorship is distinctly ant-human, and denies the most essential and primordial of human instincts – to assist a fellow human being in their time of need.

It is not the place of GoFundMe or any other fundraising site to police people’s medical choices. GoFundMe, your core principles are turning “compassion into action” and the sharing of people’s stories “far and wide.” Please do not capitulate to the SCT bullies.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.