Human Rights Watch: CDC Guideline Needs Revision

By Pat Anson, PNN Editor

Federal and state efforts to reduce opioid prescribing have harmed pain patients across the country and caused many doctors to arbitrarily cutoff or taper patients who need opioid medication, according to a new report from Human Rights Watch.

“Not Allowed to Be Compassionate” -- a 99-page report by the New York based non-profit -- highlights the many unintended consequences of the 2016 CDC opioid guideline, which discourages doctors from prescribing opioids for chronic pain. The report recommends the CDC revise the guideline to explicitly state that patents should not be involuntarily tapered off opioids and that some patients may require high doses.

“Many individuals with chronic pain are being involuntarily tapered from essential medicines that are vital to their daily functioning, depriving them of their right to health,” the report found.

“Health care providers in some cases are even turning away such individuals, insurance companies and programs are refusing coverage, and state governments are preventing physicians from using their medical judgement to provide appropriate care.”  

Although voluntary and only intended for primary care physicians, the CDC guideline has been widely adopted by regulators, law enforcement and insurance companies, with little or no effort made to measure its impact on pain patients and the quality of their care.

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One of the most surprising things Human Rights Watch learned, according to researcher Laura Mills, is how little the government knows — or is willing to say — about cutbacks in opioid prescribing.  

“We went into this report hoping we’d be able to find some data. And what we found is, if there is data, none of it has been published,” Mills told PNN. “We don’t know how many people committed suicide. We don’t know how many people are alive or dead within a year of tapering. We don’t know how many people are hospitalized.

“And that’s a huge risk because essentially we’re letting dramatic policy changes take effect very quickly. Many of these may be justified, but we aren’t measuring in real time what’s happening. At least none of these organizations are doing it in a way that’s public.”

‘Agonizing Pain Like Torture’

The report tells the story of Maria Higginbotham, a Seattle-area woman with an aggressive form of degenerative disc disease. Multiple surgeries not only failed to relieve her pain, they left her with adhesive arachnoiditis, a chronic inflammation of spinal nerves.

Although bedridden and in constant pain, Higginbotham’s doctor is planning to reduce her dose of opioid medication by 75 percent to comply with the CDC guideline.  

“I’m 57 years old and I’m almost completely bedridden due to agonizing pain like torture,” Higginbotham said. “I cannot hold my 15-month-old grandson. I cannot hold my beloved dogs, I can’t bend over to touch them. I cry out in my sleep because I can’t find a way to get comfortable.

“I can barely get myself off of my toilet. Sometimes I have to get off the couch by getting on my hands and knees and pulling myself up because I can’t stand up it hurts so badly.”  



Higginbotham’s doctor told Human Rights Watch he had no choice but to cut her opioid dose, even though he knows the medication is helping her. 

“There’s a lot of talk in the pain medicine world that if you do not get people down to 90 morphine equivalents, you set yourself up for a liability, especially if something were to happen to that patient,” he said. “We still feel like we’re vulnerable to being held liable for patients if they’re over that guideline limit, even when you know they’re not addicted and they’re benefiting (from opioids).”  

Right to Health

Although the consequences to pain patients like Maria Higginbotham have been “catastrophic,” Human Rights Watch stopped short of calling them a human rights violation.  International law gives cancer and palliative care patients a right to pain management, but it is less clear about non-cancer pain. Chronic pain patients may have a “right to health,” but they don’t have a right to opioids.

“While opioid analgesics are the cornerstone of cancer pain management, these medications do not play a central role in chronic pain management and are, indeed, controversial. The available evidence suggests that effective treatment of chronic pain requires a multidisciplinary approach, using pharmacological and non-pharmacological tools,” the report found.

“Nonetheless, the right to health clearly applies to chronic non-cancer pain patients, as does the prohibition of torture, cruel or degrading treatment or punishment, and some of the same broad principles that apply to pain management for palliative care patients apply to chronic non-cancer pain patients.” 

In addition to a revision of the CDC guideline, Human Rights Watch is calling for better insurance coverage of alternative pain therapies and a new system of metrics that measure not just “crude reductions in opioid prescribing,” but also a patient’s quality of life and quality of pain care.

Can Hypnosis Help Relieve Chronic Pain?

By Pat Anson, PNN Editor

Two new studies suggest that hypnotherapy can relieve pain for some patients with irritable bowel syndrome (IBS), complex regional pain syndrome (CRPS) and other chronic pain conditions.

The first study, published in The Lancet medical journal, involved nearly 500 IBS patients who were recruited from 11 hospitals in the Netherlands. IBS is a common condition characterized by repeated attacks of stomach pain, cramps, diarrhea and constipation.

Study participants were randomly assigned to one of three groups: individual hypnotherapy, group hypnotherapy, or support sessions that included dietary advice and education about IBS.  The hypnotherapy sessions were designed to reduce pain and discomfort from IBS.

After three months, 41% of the people in individual hypnotherapy and 33% of those in group hypnotherapy reported adequate relief, compared to less than 17% of those in education and support sessions.   


The results from group hypnotherapy were even better after 9 months. Nearly half the patients in that group reported relief from IBS symptoms.

“The trial finding that hypnotherapy works better than educational support adds evidence to previous studies showing that hypnotherapy may have a helpful effect,” the UK’s National Health Service said in a review of the Dutch study. “The finding that group hypnotherapy works about as well as individual hypnotherapy is interesting, as this means many people could be treated by the same therapist at the same time, which could reduce waiting times and the cost of treatment.

“It also demonstrates that unfortunately, even with the best care, IBS can still be a difficult condition to treat. Half or more people receiving hypnotherapy still gained no symptom relief.”

Hypnosis and CRPS

Another hypnosis study, recently reported by Japanese researchers at the World Congress of Pain, involved 121 patients with refractory chronic pain – also known as intractable pain – who agreed to hypnotherapy either biweekly or in monthly 60 minute sessions. The patients all had chronic conditions that were difficult to treat, such as CRPS, phantom limb pain, neuropathic pain and cancer pain.

Researchers found that 71% of the patients reported pain relief during the hypnosis sessions. And for many of them, the analgesic effect continued after the session ended.

“These patients have all undergone multidisciplinary pain treatment, including medication, physiotherapy and CBT (cognitive behavioral therapy),” Miyuki Mizutani, PhD, a clinical psychologist at Aichi Medical University, told Pain Medicine News. “And ultimately, they did not respond completely to those treatments. So we believe the untreatable part of the pain can be treated by hypnosis.”

Hypnotherapy even works for patients with CRPS, although they often require more hypnosis sessions before having an analgesic effect.

“I’ve now been performing hypnosis for 18 years, and have found it very effective in those patients, though it can be difficult to administer in chronic pain,” Mizutani said. “It takes time, and complete remission is not very common. However, our experience is that repeated analgesic experiences can lead to long-term improvements in chronic pain.”

Puppy Medicine

By Jennifer Hochgesang, Guest Columnist  

I was miserable. My trigeminal neuralgia pain from multiple sclerosis was still uncontrolled, leaving me mostly housebound. I had also just been diagnosed with vestibular migraines, which cause vertigo. Sometimes the vertigo was so extreme I was unable to walk, the world moving like a drunken carnival ride that never stopped even when my eyes were closed.  

And while the trigeminal neuralgia (TN) was on the right side of my mouth, I had just gotten ulcers out of nowhere on the left side. Anytime I drank something I felt a blind searing pain that took minutes to subside.

I was just barely pushing through, not sure how much more I could take. But I had an appointment to see a puppy at a nearby animal shelter.

I have had dogs all my life. Each one has been a part of the family and amazing creatures: loving, smart, playful and giving. My last dog, Aequoris, passed away two years ago and her sister Zola a little before that. I needed time before getting another dog. But as I went through this year in the worst pain of my life, I started to slowly think about getting a dog again.

But I had many questions to ask myself: Was I well enough to care for a dog? Could I afford a vet? Would the dog get enough exercise? Did I have help for the times I was too sick to care for it? Were there walking services in my area or boarding services if I had to go to the hospital? Would pet insurance cover those situations? Would my family members want a dog and be willing to help?

Even as I answered all those questions on the way to the shelter, I almost cancelled. I just felt so physically awful and it was hard to think of enjoying a puppy.   

When we got there, they put us in a small room so we could meet the puppy and get to know her a little. She was an 11-week old rescue from a litter of five. They said she was a Spaniel mix, but really they had no idea what breed she was.


When they brought her in, my first thought was that she was pretty funny looking. Then she actually ran up to me and kissed me right on the left side of my mouth, the one that doesn’t have my TN. It was like she knew! I couldn’t believe it!

I held her and smelled that sweet puppy smell. She wasn’t funny looking after all. She was beautiful. She had dots of brown over her eyes, silky black fur down her back, and fawn-like legs with spots everywhere.

We played and I fell in love within seconds. I watched her play, moving like a little infant excited with the world. I laughed as she tried to catch a ball and fell, and was so moved when she came to me for comfort.

Suddenly I realized I wasn’t in as much pain! Holding her, rubbing her soft fur and watching her jump around just did something for me – like it was medicinal. She was helping me. I knew at that moment she would bring that gift to me and in return I would do whatever I could to make sure she was cared for: vet visits, exercise, training and love. I named her Sasha: helper of womankind.

Sasha is now almost six months old. She is crazy smart and learned sit, down, and up in the air the first day. I have also started working with a trainer so she doesn’t touch the right side of my face and set off a TN attack.

I can have Sasha off leash in the backyard and throw the ball for her to catch with my 7-year-old daughter, who thankfully runs like crazy with her.

But she still rings the bell to go outside seven times an hour and tries to eat my socks no matter how many times I say no. She grabs tissues and runs so fast, dodging furniture and ducking under and over until you want to pull your hair out.

But then you leave the room for one second and come back to find her butt wiggling, tail thumping on the floor, and plaintively whinnying, “I’m so happy to see you. I missed you so much.”

Sasha has the sweetest face and when she lays next to you with her head curled in your lap letting you pet her, looking up at you -- it’s just pure love.


Is it a coincidence that in the past five weeks I’ve finally found the food triggers for my trigeminal neuralgia? I’ve stopped eating dairy, citrus, chocolate, caffeine and sugar. My pain has gone down so much. It’s like night and day since I got Sasha. I still need to work with a nutritionist to make sure I’m eating the right foods, but for now this is working for me.

Sasha is still a baby so I haven’t expected her to do much more than be a cute furball. But one day while I was working on my iPad, she came and positioned herself right in my lap. I had to move her over a little so I could work. She still stuck like glue to the left side of my body with her head on my leg or arm throughout the day. I thought she was just tired.

Then slowly my TN pain began to increase, until I had a really awful volley of attacks every few minutes. Sasha moved closer and closer to my face as the pain got worse. During one brutal attack she kissed me on the left side and I was so thankful. She actually understood I was in pain and where it was. She knew when it was getting worse. And all she wanted was to heal and comfort me.  

As I write this, Sasha is sitting right here next to me chewing on a rawhide pretzel. She brought seven toys up on the couch in case she gets bored with the pretzel and wants me to throw something. I take a break from writing to pet her and sometimes she will turn over and give me her belly to rub. Soon she’s going to get up and ring that bell to go outside in the light snow.

She is just the most beautiful thing.


Jennifer Hochgesang lives in Illinois. Jennifer has multiple sclerosis, trigeminal neuralgia and vestibular migraines.

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 U.S. Pain Foundation Inflated Its Membership

By Pat Anson, PNN Editor

The U.S. Pain Foundation has long claimed to be “the leading chronic pain advocacy organization in the country,” with volunteers in 50 states and nearly a quarter of a million social media followers.

“What started as a small grassroots group now has 90,000 members nationwide and a network of 1,000 volunteers,” a U.S. Pain press release said in 2017.  

Impressive numbers like that helped the Connecticut based non-profit rise to national prominence in the pain community and raise several million dollars in donations from major healthcare companies such as Pfizer, Lilly, AstraZeneca, Novartis and Johnson & Johnson.

But PNN has learned that the tabulation of U.S. Pain’s membership and followers is unreliable and misleading. At best, they’re a product of bad metrics and marketing hype. At worst, they’re evidence of consumer fraud.  

“If they’re talking about members, then they should have a verified roll of members. And if they’ve inflated that number and there’s no rational basis for coming up with the number that they’re telling the public, then that could potentially be considered consumer fraud,” says attorney Seth Perlman, who has represented non-profits for 30 years.

In recent months, U.S. Pain has announced it is “undergoing a complete revamp of its transparency policies and procedures.” One of the first things the organization did was significantly downsize its membership from 90,000 to 15,000.



What happened to the 75,000 missing members?

“We have changed the way we classify and report members,” interim CEO and board chair Nicole Hemmenway said in an email to PNN. “Previously, ‘members’ included mailing list subscribers, support group participants, INvisible Project readers, anyone who received our print materials, and people who attend our events. Now the term ‘member’ has been redefined as the number of individuals who have signed up for our mailing list.”

Hemmenway has been interim CEO since May, when U.S. Pain’s founder and longtime CEO Paul Gileno resigned at the request of the board of directors.  “As the new leader, I am heading up a review and revision of our governance and transparency policies,” Hemmenway said. 

But full transparency has been slow in coming. Not until last week did Hemmenway and the board disclose the reason behind Gileno’s forced resignation. An internal audit found evidence of “financial irregularities” and that Gileno embezzled an undisclosed amount of money from the non-profit.  

“I am sad to say that I made some big mistakes over the past few years and took money from US Pain for my personal use. I make no excuses for this,” Gileno confessed in an email sent to U.S. Pain’s leadership.  

We asked Gileno why U.S. Pain’s membership numbers were so high while he was CEO. 

“Our stats were based on email sign ups, social media sign ups and in-person sign ups,” Gileno said. “I have no clue why they were reduced.” 

In addition to the steep drop in membership, U.S. Pain has also seen a decline in its social media following. At one time, the organization claimed to have 59,000 followers on Twitter.

That was reduced to about 13,000 followers after Twitter purged from its system millions of fake and inactive accounts. 

 from US Pain foundation 2018 promotion

from US Pain foundation 2018 promotion

“The (Twitter) reform takes aim at a pervasive form of social media fraud,” The New York Times reported. “Many users have inflated their followers on Twitter or other services with automated or fake accounts, buying the appearance of social influence to bolster their political activism, business endeavors or entertainment careers.”  

Some of the followers that U.S. Pain has on Twitter were apparently bought and paid for in a promotional scheme to sign up new followers. Hemmenway says the board never authorized such an expenditure. 

“Based on records, in 2016, $515 was spent on a Twitter digital marketing initiative under previous leadership. This is not something the Board or others within the organization were aware of or approved,” Hemmenway said. 

Hemmenway has been a key member of U.S. Pain since it was founded in 2011, serving as vice-president until Gileno’s departure. According to Gileno, she oversaw the non-profit’s social media efforts. “Nicole and the board have always been in charge of that, as was director of communications,” Gileno told PNN. 

Even after the Twitter purge, U.S. Pain still appears to have an unusual number of suspicious followers., a website that analyzes Twitter data, estimates that only a third of @US_Pain’s 13,000 followers are legitimate. The rest are either fake or inactive.



There is no similar way to analyze the legitimacy of U.S. Pain’s 216,000 followers on Facebook, a social media platform where you can also buy followers.

Consumer Fraud Issue

Marketing that misleads or exaggerates may be all too common in the for-profit world, but it’s risky business for a charity dependent on donations and public goodwill. Taken too far, it could lead to allegations of civil or even criminal misconduct, according to attorney Seth Perlman. 

“That’s only an issue if they use those numbers to impress upon the donating public or their supporters about how widespread their message is. And how much awareness the organization has with the public. If they’re using it as a way to inducing people to support the organization, it’s a potential consumer fraud issue,” said Perlman. “If you mislead the public and present information that is incorrect and is purposely inflated, the regulators take an extremely dim view of that.  

“It’s almost always a civil matter, unless it rises to the level of an absolute egregious fraud where there is absolutely no basis for making the claims that they did and it was simply a rip off.  Then that could turn into criminal (fraud). But the civil remedies are significant, including removal of the board of directors.” 

As PNN has reported, U.S. Pain is now under investigation by the Connecticut Attorney General’s office and the Connecticut Department of Consumer Protection, which regulates charities in the state.  Because its registration as a charity recently expired, U.S. Pain at this time cannot legally solicit donations in Connecticut. 

Federal prosecutors at the U.S. Attorney’s Office would neither confirm or deny if they were investigating U.S. Pain and its former CEO, although Gileno anticipates going to prison for fraud or tax evasion.  

“I will have to go to jail maybe as long as 3 years for taking the money from US Pain,” Gileno said in his confession. 

U.S. Pain is also in danger of losing its tax-exempt status.  The non-profit’s tax returns for 2016 and 2017 have not been filed and are delinquent.  Under IRS rules, a non-profit that does not file returns for three consecutive years automatically loses its tax exemption. Hemmenway blames Gileno for the long delay in filing, but expects the tax returns to be completed in coming weeks. 

“Because of the inaccurate and incomplete information provided by the former CEO, it has taken a significant amount of time to compile accurate books and records,” she said. “The organization has been working diligently with its new team to prepare the 2016 and 2017 returns, with the goal of filing them by the end of the year.”

Cannabis Gave Me Hope in My Darkest Hour

By Mia Maysack, PNN Columnist

I've lived most of my life with an ongoing migraine -- often trapped in a hazy brain fog induced by prescription medication.  

Suggestions of all kinds of alternatives have been made to me, including cannabis. But it wasn't until my very first headache cluster – which lasted 54 straight days -- that I gave in and the medicinal use of this miracle drug saved my life.

At that point, I hadn't slept in an inhumane amount of time, wasn't able to work, participate in life, or keep food and drink down. Then a friend literally begged me to "take a hit."

Call me a square, but I didn’t take a sip of alcohol until my 21st birthday and had never used marijuana or had the desire to.  What did I have to lose?

I had tried everything else. My arms were still bruised from IV's at the ER. So with absolutely no more craps to give, I lit up.  And almost instantaneously felt better.

I spent a lot of time battling shame for breaking the law and the stigma of marijuana use. But I've evolved to accept my truth. Marijuana is not a gateway drug, unless a person makes the choice to escalate their substance use. No treatment option is meant to be approached as a cure, nor should it be a crutch.   

Marijuana can be ingested in multiple ways, there are countless strains and products without the THC itself -- although that's the key element that eases my ailments. It helps me combat nausea, cultivate an appetite, gives a slight boost in morale, and get quality rest.  


Cannabis works for me about half the time.  But that goes deeper than a glass half empty or half full.  It's a matter of having a resemblance of a life or not.   

There have been no overdoses or deaths reported from this natural plant. Over two dozen states, as well as our nation's capital, have adapted to the reality that it can be used as medicine.  It has saved and made A LOT of money, lowered criminal activity and rescued many others aside from myself.  

If someone had told me one day I'd be writing about marijuana for the world to see, I wouldn't have believed them.  But my public, unapologetic declaration is that cannabis provided a glimmer of hope during my darkest hour.  I share this not to promote it or advise anyone else, but because I want to raise awareness and demonstrate the courage to step out of your comfort zone.   

I've wounded relationships over this stuff, because not everyone can wrap their minds around it. I've also gotten in a bite sized amount of trouble over it -- munchie pun fully intended. It’s not for everyone but there are good reasons ill patients are being granted access to it. There’s research to support marijuana being helpful in attacking the opioid crisis, both for those struggling with addiction as well as those who are prescription dependent.    

How a person chooses to conduct themselves is a matter of free will. It has nothing to do with whether a CBD oil extract or pot brownie helps them get out of bed in the morning. It’s a matter of self-accountability and self-care. Cannabis saved my life.  


Mia Maysack lives with chronic migraine, cluster headaches 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.

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.

U.S. Pain Foundation Under Investigation

By Pat Anson, PNN Editor

The Connecticut Attorney General’s office has opened an investigation into allegations of financial irregularities and embezzlement at the U.S. Pain Foundation, PNN has learned.

“I can confirm that our office has had contact with a representative from the U.S. Pain Foundation and that our office has opened an investigation into this matter. We’re unable to comment further,” said Jaclyn Severance, a spokesperson for Connecticut Attorney General George Jepsen.

U.S. Pain released a statement late Friday accusing former CEO Paul Gileno of misusing funds. Gileno resigned at the request of the non-profit’s board of directors in May and later sent an email to U.S. Pain leadership confessing to the crime.

“I am sad to say that I made some big mistakes over the past few years and took money from US Pain for my personal use. I make no excuses for this,” Gileno wrote.


Until last week no explanation was made to U.S. Pain’s members, volunteers or donors about the reasons behind Gileno’s resignation. The Connecticut-based non-profit has still not disclosed the amount of money stolen, when the thefts occurred, or if others were involved.

“We have been working diligently to rectify the situation. Steps that we’ve taken include alerting the appropriate legal authorities and cooperating fully in the investigation; seeking restitution of the misused funds; implementing a more robust system of checks and balances; and hiring a new interim chief financial officer, new counsel, and a new tax accountant,” U.S. Pain said.

PNN has confirmed the state Attorney General’s Office was recently contact by U.S. Pain, but lawyers there say the non-profit probably should have acted sooner.

“There is no requirement under the law to report embezzlement, but it is typically in their best interest to do so,” said Severance.

U.S. Pain was founded by Gileno in 2011 and has received several million dollars in mostly corporate donations to fund programs that raise awareness about chronic pain.

Lapsed Registration

The Connecticut Department of Consumer Protection, which regulates charities in the state, recently opened a second investigation of U.S. Pain after its registration lapsed on December 1. Without an active registration, U.S. Pain cannot legally solicit charitable donations in Connecticut. 

“They have not submitted renewal paperwork. So technically they’re not supposed to be soliciting in Connecticut,” said spokesperson Lora Rae Anderson. “They can’t make phone calls or put ads in Connecticut newspapers. They cannot actively solicit in the state.” 

In addition to U.S. Pain’s legal problems, it is in danger of losing its tax-exempt status. The non-profit’s tax returns for 2016 and 2017 have not been filed and are delinquent.  Under IRS rules, a non-profit that does not file returns for three consecutive years automatically loses its tax exemption. U.S. Pain’s 2015 tax return was filed in October 2017, over a year overdue.

“Because of the inaccurate and incomplete information provided by the former CEO, it has taken a significant amount of time to compile accurate books and records,” interm CEO and board chair Nicole Hemmenway said in an email to PNN last week.

Hemmenway has been a key member of U.S. Pain since its founding and sources say it is unlikely she was unaware of the financial irregularities that Gileno is accused of.

Tax returns open a rare window into how much money a non-profit has raised and how it was spent. Non-profits are not required by law to disclose who their donors are or the size of their donations, but their tax returns need to provide a detailed account of what was spent on salaries, travel, office supplies, accounting and other expenses. According to U.S. Pain’s 2015 tax return, Gileno was paid a salary of $403,000.  

Fentanyl and Heroin Linked to 70% of Overdoses

By Pat Anson, PNN Editor

The Centers for Disease Control and Prevention released another report today documenting the changing nature of the overdose crisis and the decreased role that prescription opioids have in drug deaths.  About 70% of fatal overdoses in 2016 involved either illicit fentanyl or heroin.

CDC researchers used “literal text analysis” to study death certificates from 2011 to 2016, looking for drugs listed as the cause of death, significant conditions contributing to that death, and a description of how the death occurred.  Alcohol, nicotine and other non-drug substances were not included in the analysis.

Researchers found that the opioid painkiller oxycodone was the most frequently mentioned drug involved in 2011 overdoses, but by 2016 oxycodone had fallen to 6th place, behind fentanyl, heroin, cocaine, methamphetamine and the anti-anxiety drug alprazolam (Xanax).


Source: CDC

CDC researchers noted that many overdose deaths involve multiple drugs.

“We’ve had a tendency to think of these drugs in isolation. It’s not really what’s happening,”  lead author Holly Hedegaard, PhD, told the Huffington Post.

For example, fentanyl and cocaine were mentioned in nearly 4,600 deaths, while oxycodone and alprazolam were mentioned in more than 1,500 deaths. 

The CDC has already released a preliminary estimate on overdoses for 2017 using a different form of analysis. But the results are largely the same. Over 70,200 people died of a drug overdose in 2017 – the highest number on record. Deaths involving fentanyl and other synthetic, mostly black market opioids surged 45 percent, while deaths involving natural or semisynthetic opioids, mostly painkillers such as oxycodone and hydrocodone, remained flat.      

The number of opioid prescriptions in the United States has been falling since 2011, but opioid medication remains a favorite target for regulators. The DEA has proposed another round of cuts in the supply of opioid pain medication – a 10% reduction in manufacturing quotas in 2019 for oxycodone, hydrocodone, morphine and three other opioids. Some of the medications are already in short supply, forcing hospitals to use other pain relievers to treat surgery and trauma patients.

The Trump Administration says opioid pain relievers are “frequently misused” and that reducing their supply will help prevent addiction, abuse and overdoses. There is little or no evidence that is true.

Don’t Put All Chronic Pain Patients in the Same Basket

By Carol Levy, PNN Columnist

I recently read an article in KevinMD. The author, a family doctor in Maine, wrote about the need for more behavioral (mental) health treatment in primary care settings:

“We are doing that with chronic pain. Any patient who needs ongoing pain medication is required to attend four individual sessions to learn about what pain is, how the brain is the center of the pain experience, and how our pain experience can be altered by internal and external factors. We don’t use ‘pain scales’ for the simple reason that pain is never objective.”

As I read that, my blood boiled. I am sick of this concept that those of us with chronic pain need to be educated on how pain works, how our brains work, and how our pain can be mediated or controlled by mental health therapy.

Does a patient with cancer or arthritis need to be “educated” on how their brain works? Are they taught that the brain is the center of their health problems? Are they instructed with mumbo-jumbo about how their conditions can be “altered by internal and external factors”?

Or are they told what treatments are available for cancer or arthritis and how to deal with the symptoms?

It is not that I think education is unnecessary. The more we know and can understand about how our pain works, the better. It is important for patients with all diseases, not just ours, to know what we can and cannot do, what will make it worse, and what might help make it better.


But, once again, chronic pain patients are treated differently.  We can assist in our treatment only if we learn to change how we think and react to the symptoms.  

After I took a few deep breaths I calmed down. And gave it some further thought.

It occurs to me that the medical community often puts chronic pain conditions into one basket. But chronic back pain is not the same as pain from CRPS or trigeminal neuralgia. And rheumatoid arthritis and Ehlers-Danlos syndrome are not on the same level physiologically or psychologically as tension headaches.

It’s as though all cancers were considered as one. As though basal cell carcinoma - the least dangerous of cancers -- requires chemotherapy and radiation just like breast or lung cancer.

Many of us already have to fight not being accepted or believed by families, friends and colleagues. I wonder if it is time to put some of that energy into working with medical providers so they will accept that not all pain is the same.  And our needs should be treated as any other chronic medical condition.

Carol Levy250.jpg

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.

My Therapist Told Me to Write This Column

By Crystal Lindell, PNN Columnist

My therapist said I should write a column about how to travel while sick and I would love to do that, but I haven’t figure it out yet.

I get through work trips by drowning myself in dry shampoo, sleeping on conference tables between meetings, eating coffee for every meal, and using pain medication that wears off too fast — all while getting super behind on emails. 

My therapist said I should write a column about how to manage your health while maintaining a full-time job. Who the hell knows how to do this?

I work at home, which is a great gig if you can get it, but most people can’t.

Actually, I do have a life tip: If you have to work while sick, work at home. That’s it. That’s all I’ve got.


I spend my work days in my pajamas under a soft red blanket on the couch. I take pain pills when I hit my 3 pm slump, and I tell my coworkers entirely too many details about my health, while also avoiding using scooters at conferences so that I can look cool. I call in sick too much and not enough. And I am always tired.

My therapist also said I should write a column about how to live with chronic pain. Yeah, okay. I’ll get right on that.

For now, my life tips include: Saying “yes” every single time your doctor offers you pain pills; throwing away every cute pair of heels you own because they just aren’t worth it; and using filters if you ever have to video chat someone.

Every day of my life is a struggle. Every flipping day. I tried working out recently and fractured my foot, and then I tore my rotator cuff by using crutches. Now my foot is still messed up, and I just limp around on it while rubbing my shoulder. Sexy.

I skip physical therapy appointments because they’re too expensive, I’m constantly crash dieting and then gaining the weight back, and I never wear my shoulder sling or my orthopedic boot.

I’m obviously great at this.

I spend all my money on co-pays, Taco Bell, and kratom. I have no long-term career plan that goes anything beyond, “Get disability — eventually.” And I literally go off my antidepressants every few weeks because I think I don’t need them because I’m feeling better. This is a lie. I need them.

I wish I was wise and cute and Pinterest worthy. I’m not. I’m barely Walmart trip worthy most days. I never get enough sleep, I cry entirely too much, and there is literally a dented space on the couch from where I spend all my time.

So if anyone has figured all this out, let me know. You should probably write a column about it.


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.  Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

Ex-CEO Admits ‘I Took Money From U.S. Pain’

By Pat Anson, PNN Editor

The founder and former CEO of the U.S. Pain Foundation admitted over three months ago that he “made some big mistakes” and took money from the non-profit for his own personal use.

Paul Gileno resigned at the request of U.S. Pain’s board of directors in May, but the reasons behind his departure have only emerged in the last few days. In a statement posted Friday on the non-profit’s website, interim CEO and board chair Nicole Hemmenway publicly acknowledged for the first time that an internal audit six months ago had uncovered “financial irregularities” involving Gileno.

“The findings were clear that this individual had misused funds from the U.S. Pain Foundation,” Hemmenway wrote.

That Gileno had embezzled money from the non-profit has been known to the leadership of U.S. Pain for some time. He confessed to it in an email on September 5th. PNN has obtained a copy of the email and Gileno has acknowledged writing it.

“I am sad to say that I made some big mistakes over the past few years and took money from US Pain for my personal use. I make no excuses for this. I did take money and I will pay the ultimate price,” Gileno wrote.

“I did mismanage money and wasn’t as strict on budgets as I should have been, but it never effected what we did (nor) did it hurt our growth.”



Gileno sent the email to over a dozen key people at U.S. Pain, including board members Wendy Foster, Ellen Lenox Smith and Suzanne Stewart – who resigned from the board a few weeks later. Other recipients include Cindy Steinberg, National Director of Policy and Advocacy; Shaina Smith, Director of State Advocacy;  Lori Monarca, Executive Office Manager; Casey Cashman, Director of Fundraising and Emily Lemiska, Director of Communications.

U.S. Pain’s volunteers, ambassadors, and donors were left in the dark and never informed about the audit or Gileno’s confession. And the non-profit continued to solicit and accept donations as if nothing was wrong.

Only after inquiries from PNN about Gileno’s resignation and the lengthy delay in filing U.S. Pain’s tax returns did the organization release Friday’s statement. The statement offered no specifics on the financial irregularities that were found, the amount of money stolen, when the thefts occurred, or if others were involved.

‘I Never Took a Salary’

Gileno founded U.S. Pain in 2011 and it quickly grew into a nationwide patient advocacy group that received millions of dollars in mostly corporate donations.

Gileno claimed in his email that “I never took a salary… nor did I receive any benefits." But U.S. Pain’s 2015 tax return indicates Gileno was paid a salary of $403,000. The non-profit’s tax returns for 2016 and 2017 have not been filed and are delinquent, which could potentially jeopardize U.S. Pain’s tax exempt status.

In February, U.S. Pain was criticized in a congressional report for participating in a $2.5 million prescription co-pay program funded by Insys Therapeutics, an Arizona drug maker accused of bribery, fraud and other criminal charges. The co-pay program was scrapped soon after Gileno’s departure.

In his email, Gileno said he never took kickbacks from Insys or other drug makers.

“I always put the person with pain first and never accepted money from pharmaceuticals to do their bidding not once. If you are questioning this then that makes me sad because it never happened and you don't really know me,” Gileno wrote.

“I have also worked with the US Attorney in MA (Massachusetts) to deal with US Pain’s relationship with INSYS.  I cooperated with the FBI and HHS (Health and Human Services). Once again so you can feel better not one time did I take or accept money from a pharmaceutical to push a drug. They are using me to help them deal with INSYS and build whatever case they are building.” 

Last month a former Insys vice-president pleaded guilty in federal court in Boston to charges of bribing doctors to prescribe Subsys, a potent fentanyl spray made by Insys that has been blamed for the overdose deaths of hundreds of pain patients.

A spokesperson for the U.S. Attorney’s Office would not say if Gileno is a co-operating witness in the Insys case or if U.S. Pain is under investigation. “Per Department of Justice policy, we can neither confirm nor deny investigations,” said Liz McCarthy, U.S. Attorney’s Office – District of Massachusetts.

Gileno, who has two young sons, was remorseful in the email and asked for forgiveness. He anticipates serving jail time.

“My life is ruined right now because of my mistakes,” he wrote. “I am deeply truly sorry. It was selfish to take money from US Pain.

“When they finally give me charges to plead guilty to, either tax evasion or fraud or whatever they come up with, there will be a sentencing and they will need character letters or testimony of the person I am besides the taking of the money. If you reach out to me privately that you would like to stay in contact, it would mean the world to my boys and myself if you would send one in.”

‘Financial Irregularities’ Found at U.S. Pain Foundation

By Pat Anson, PNN Editor

The U.S. Pain Foundation released a statement late today accusing former CEO Paul Gileno of misusing funds and other unspecified “financial irregularities.” Gileno resigned at the request of the non-profit’s board of directors in May.

U.S. Pain is a 501 (c) (3) non-profit that claims to be the leading advocacy group representing chronic pain patients. Founded by Gileno in 2011, U.S. Pain has received several million dollars in grants and donations to raise awareness about chronic pain.

Until now, no explanation was ever made to U.S. Pain’s members, volunteers or donors about the reasons behind Gileno’s forced departure. The statement admitting funds were misused was released only after weeks of questioning by Pain News Network about Gileno’s resignation and the long delay in filing U.S. Pain’s 2016-2017 tax returns.

“As a result of an internal audit, we were dismayed to discover financial irregularities involving the former CEO of U.S. Pain Foundation. The Board of Directors immediately hired an independent attorney and a forensic accountant to investigate,” Nicole Hemmenway, interim CEO and chair of the board, said in the statement.

“The findings were clear that this individual had misused funds from the U.S. Pain Foundation. The Board concluded that the former CEO repeatedly misled and concealed information from the Board of Directors and staff. The Board demanded and received the former CEO’s immediate resignation.”


U.S. Pain’s statement – which notably doesn’t even use Gileno’s name – offered no specifics about how funds were misused or the amount of money involved.

Gileno said in an email to PNN that he, not the board, hired an attorney and accountant to review the organization’s financial records. His email did not specifically address the allegation of misusing funds.

(Update: In an email sent to his former colleagues three months ago, Gileno admitted embezzling funds from U.S. Pain. See “Ex-CEO Admits ‘I Took Money From U.S. Pain’)

“I am the one who hired the attorney and accountant back in February 2017. The board did not. I hired them to fix any issues we may have had so we can grow,” Gileno wrote. “They are trying to cover their asses for being (an) inadequate board I guess.

“Also, I never misled them. They were part of U.S. Pain for over 10 years and I talked with them daily. Nicole and I were close like a brother and sister and I never hid one thing. I feel bad they are trying to use me as an excuse.” 

Missing Tax Returns

U.S. Pain’s failure to file tax returns for 2016 and 2017 could potentially put its tax-exempt status at risk. Under IRS rules, a non-profit that does not file returns for three consecutive years automatically loses its tax exemption. U.S. Pain’s 2015 tax return was filed in October 2017, over a year overdue.

“Because of the inaccurate and incomplete information provided by the former CEO, it has taken a significant amount of time to compile accurate books and records,” Hemmenway said in an email to PNN. “The organization has been working diligently with its new team to prepare the 2016 and 2017 returns, with the goal of filing them by the end of the year.”

Tax returns open a window into how much money a non-profit has raised and how it was spent. Non-profit organizations like U.S. Pain are not required by law to disclose who their donors are or the size of their donations, but their tax returns need to provide a detailed account of what was spent on salaries, travel, office supplies, accounting and other expenses.   

According to U.S. Pain’s 2015 tax return, Gileno was paid a salary of $403,000, a hefty share of the $1.35 million in revenue the non-profit reported that year. Gileno says part of his salary was “back pay” for prior years when he was paid little or nothing at all.

 paul gileno

paul gileno

The missing returns from 2016-2017 cover what appears to have been the most successful fundraising period in the non-profit’s history, when it received millions of dollars in donations, primarily from healthcare companies. The money funded a variety of U.S. Pain programs such as the Invisible Project, which raises awareness about chronic pain, and the Advocacy Network, which helps volunteers become patient advocates.

Insys Co-Pay Program

One program caught the attention of congressional investigators. “Gain Against Pain” was a $2.5 million prescription drug co-pay program funded by Insys Therapeutics, an Arizona drug maker that faces racketeering, fraud and other criminal charges over its marketing of Subsys, an expensive and potent fentanyl spray. Although Subsys is only approved for cancer patients in severe pain, Insys allegedly bribed doctors to prescribe it off-label for back pain and other chronic pain conditions, which resulted in the overdose deaths of hundreds of patients.

“It’s appalling that this organization partnered with Insys, which has a history of criminal behavior,” says Adriane Fugh-Berman, director of PharmedOUT, which seeks to expose unethical healthcare marketing. “It seems to fly in the face of their stated mission and seems like a betrayal of the patients they claim to represent.”

A report released by Sen. Clair McCaskill (D-MO) in February portrayed Insys donations to U.S. Pain and other non-profits as little more than marketing and public relations schemes aimed at getting more Subsys prescribed.

“These financial relationships were insidious, lacked transparency, and are one of the many factors that have resulted in arguably the most deadly drug epidemic in American history,” the McCaskill report found.


Gileno defended U.S. Pain’s acceptance of money from Insys. "This funding, like any funding we receive, does not influence our values,” he said in a statement in response to the McCaskill report.

Three months later, Gileno was gone from U.S. Pain and the organization moved quickly to disassociate itself from Insys. The co-pay program was shut down and U.S. Pain said it would no longer accept funding from Insys.

The first reports about the aggressive marketing and off-label use of Subsys began in 2014. By 2015, overdoses were so common that the Southern Investigative Reporting Foundation referred to Insys as “Murder Incorporated.”

When PNN asked Hemmenway if the board of directors was aware of the criminal investigation of Insys at the time the co-pay program was established in late 2016, she claimed the board was “misled” about the program and never adequately infomed. “The Board was not aware of this program before it started, nor did the Board approve it,” Hemmenway wrote in an email.

Gileno disagrees, saying Hemmenway and the board were kept informed.

“Nicole and board knew in December 2016. Not sure why they are lying. Everyone who worked at U.S. Pain knew about it. Nicole certainly has emails from me about it. I don't know what games they are playing but of course they knew,” Gileno said. “The board of directors have always been a part of every decision and (was) excited about having a co pay program to help people with pain.” 

“It seems highly unlikely that a board would be unaware of a $2.5 million dollar program or that a president would be able to okay something like that without informing the board,” says Fugh-Berman, who co-authored an article critical of U.S. Pain’s “cozy relationship with its funders.”  

“Where did that money go? And the fact that it was used to make it easier for patients to get a highly addictive fentanyl drug that was made by the sponsor of that program is highly unethical.”

A non-profit expert told PNN it is unusual for a board to be unaware of a major program. 

“If a president initiates a program without the board’s approval, that’s a major problem. The board must decide what kind of program an organization conducts. It’s a board’s fiduciary responsibility and it’s important that the board meets its responsibility,” said Seth Perlman, an attorney who has represented non-profits for 30 years.

U.S. Pain board member Ellen Lenox Smith declined a request to comment for this story. Board member Wendy Foster did not respond to a request for comment.

‘Help Clean Up This Mess’

Some insight into how U.S. Pain and its board operate is provided in a blog post by former board member Suzanne Stewart, who resigned in September. In her partially redacted resignation letter, Stewart said she initially felt “it was my duty to stick by Nicole & the other Board members & our legal team, to help clean up this mess.”

But Stewart grew frustrated because she was “kept in the dark about many things” and decided it was time to leave.   

“I don’t feel safe being involved with voting on big decisions yet being left in the dark much of the time. I don’t really know where money is going or where it comes from in all honesty,” wrote Stewart, who also declined to comment for this story.

“It's sad to see the organization I started from nothing, in my bed on my lap top change so much and almost seem not to care about people with pain,” says Gileno. “I can’t believe after all of the things I have done and all of the work I have done to help the pain community I am being vilified.”

“We are determined not to let the actions of one individual interfere with or diminish our efforts to serve people with pain,” said Hemmenway. “As the new leader, I am heading up a review and revision of our governance and transparency policies. Due to our leadership changes over the past year, we feel this is an important step for the organization’s continued growth.”

One such “revision” was to significantly downsize U.S. Pain’s membership, from 90,000 to 15,000 members. More about that next week.

The Overdose Crisis Is Not Just About Rx Opioids

By Roger Chriss, PNN Columnist

The CDC last week released its latest report on drug overdoses in 2017.  The death toll was the highest recorded, with over 70,000 Americans dying from drug poisoning. Deaths involving illicit fentanyl and other black market synthetic opioids surged 45 percent, while deaths involving opioid pain medication remained unchanged.

Although the death toll for 2018 may be a bit lower, it is premature to declare as the Washington Post did that “the opioid epidemic may be receding.”

Instead, the crisis is evolving.

“Fentanyl deaths are up, a 45 percent increase; that is not a success,” Dan Ciccarone, PhD, a professor at the University of California, San Francisco, told the New York Times. “We have a heroin and synthetic opioid epidemic that is out of control and needs to be addressed.”

The available data for 2018 supports this. There have been over 1,500 overdoses in Massachusetts so far this year and the details of those deaths are sobering. Fentanyl was present in 90 percent of toxicology reports during the second quarter of 2018, a three-fold increase since 2014. Prescription drugs of any form were found in only 17 percent of reports.

Public health data from Connecticut is similar. Illicit opioids were found in nearly 80 percent of the 867 people who died of an unintentional opioid overdose in 2016.


Current data is also showing that drugs like methamphetamine are having a significant impact on overdose rates. Kaiser Health News reports that amphetamine related hospitalizations – mostly involving meth – are surging and that more than 10,000 people died of meth-related drug overdoses last year.

The opioid overdose crisis is no longer primarily about prescription opioids used medically, or even exclusively about opioids. And studies of long-term opioid therapy are not showing increasing rates of overdose.

Medscape reported on a recent study that found cancer patients had a much lower risk of dying from an opioid overdose than the general population. The study looked at opioid deaths from 2006 through 2016, a period that saw rapidly rising overdose rates. Opioid death rates jumped from 5.33 to 8.97 per 100,000 people in the general population during that period, but among cancer patients, opioid deaths rose from 0.52 to 0.66 per 100,000.

Another recent study found that the use of opioids in treating pain from sickle cell disease was “safe” and rarely results in overdoses  

“What our study uniquely shows is that, using this large nationwide database, that deaths in a hospital setting related to opioid toxicity or overdose almost never happen among those with sickle cell disease," Oladimeji Akinola Akinboro, MBBS, of Boston University School of Medicine told Medpage. "This suggests that current patterns of opioid use in this population is safe, assuming we continue the same risk-mitigation strategies."

In other words, long-term pain management in disorders like cancer and sickle cell disease is not associated with increased rates of fatal overdose. Both of these studies have important limitations, in particular the possibility that some overdose deaths went uncounted. But the low rates of overdose in these groups suggests that with careful patient screening and monitoring, opioids can be used safely.

More can and should be done. Opioids are being prescribed more cautiously to children and teens. This is important, in light of a new JAMA study on wisdom tooth extraction, which found that over 5% of young people who had their wisdom teeth removed and received opioids for pain control went on to receive an opioid abuse-related diagnosis.

The overdose crisis is fast evolving into a poly-drug substance use problem. Addiction expert Michael Botticelli, the former director of National Drug Control Policy, told WBUR that a better understanding is needed of why people use drugs, not just which drugs they use.

"The data are pretty clear that we have a drug use epidemic and a drug overdose epidemic,” he said. “I think we have to really be careful that our strategies speak to all of those issues.”

Roger Chriss.jpg

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.

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.

10 Ways to Avoid Depression Over the Holidays

By Barby Ingle, PNN Columnist

Do you celebrate the holidays or do you secretly dread them? For some of us, the period between Thanksgiving and St. Patrick’s Day can be the most depressing time of the year.

The first reason is that we are exposed to less sunlight during the winter. We need light to maintain our physical, mental and emotional health. There are also societal pressures that can weigh heavily on pain patients, such as not being able to participate in holiday activities. The holidays can make us depressed, financially strained, anxiety ridden, and harder to be around.

Here are some early warning signs of depression:

  • Difficulty concentrating, remembering details and making decisions

  • Fatigue and decreased energy

  • Feelings of guilt, worthlessness, hopelessness and/or helplessness

  • Insomnia, early-morning wakefulness, or excessive sleeping

  • Irritability, restlessness

  • Loss of interest in activities or hobbies once pleasurable, including sex

  • Overeating or appetite loss

  • Persistent aches or pains, headaches, cramps, or digestive problems

  • Persistent sad, anxious or "empty" feelings

  • Thoughts of suicide or a suicide attempt

Take this seriously, as depression carries a high risk of suicide. Anybody who expresses suicidal thoughts or intentions should be taken very seriously. Do not hesitate to call your local suicide hotline immediately.

Depression can cause you to isolate yourself from others, decreasing your mobility and increasing drug dependence. A cycle begins where depression causes and intensifies the pain and stress on your body.

It can be hard to face the emotional aspects of pain, but it is important to look at the signs and be aware of them. Remember, pain causes depression, not the other way around! 


Depression can keep you from taking care of yourself. You cannot afford to let yourself fall into dark dreary moods. Be sure, no matter how you are feeling, that you are following the goals set for your care, such as taking the correct dose of medication at the correct time of each day.

It may take a little effort to keep healthy habits when you are depressed. Here are 10 tips fellow pain patients, friends with seasonal affective disorder (SAD), and I have used over the years.  

  1. Use artificial light sources. The body’s internal biological clock can get really out of sync during the winter season. Bright light therapy becomes an important tool.

  2. Try something new, such as a craft or hobby.

  3. Progressive muscle relaxation, hypnosis and meditation can reduce stress and pain levels

  4. Stop doing things you don’t enjoy and do things you like, such as listening to music or aroma therapy.

  5. Physical therapy and exercise can break the cycle of pain and help relieve depression

  6. Make a list of life’s blessings, reminding yourself what you have accomplished in life. Even if you can’t do it now, you could once and no one can take that from you.

  7. Cognitive and behavioral therapies teach pain patients how to avoid negative and discouraging thoughts.

  8. Change everyday routines to ward off physical and emotional suffering

  9. Clean out or organize an area of the house. It could be as simple as clearing a bedside table or filing your medical records. Getting organized in one area of your life can help you manage other areas more successfully.

  10. Seek professional help if you start feeling overwhelmed. Dealing with chronic pain can slow recovery from depression. Specialists should treat both problems together.  

Getting your depression under control will help you focus on managing your health. As you learn to let go of anxiety and stress, it will help lower pain levels and make the holidays more enjoyable.  

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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.

Living in the Real World of Pain Care

By Ann Marie Gaudon, PNN Columnist

For years now, chronic pain patients in Canada and elsewhere have heard nothing but disingenuous and downright nonsensical information about opioid medication.

It’s beginning to feel like a cheese grater scraping on my very real nerves. No facts or just wrong facts from the government, regulators and the media. Are all of these players living in an alternate reality?

Rewind back to June 2, when pain patient and advocate Paul arranged a meeting between several physicians and pain patients. You can find out the whole story, as Paul told it to me, on this YouTube video. The sole doctor attending the meeting had one objective: To present (via PowerPoint no less) how “responsible and non-biased” leaders and physicians are when it comes to pain patients.

Indeed, the College of Physicians and Surgeons of Ontario put out “A Message to Patients Living with Chronic Non-Cancer Pain.” It tells us it is never appropriate to abandon a patient on long-term opioid therapy or abruptly cut off or threaten to cut off a patient’s medication” and that “patients taking prescribed opioids should not be stigmatized.”

In its guideline for accepting new patients, the college also tells us that “physicians must accept new patients in a manner that is fair, transparent and respectful…”

However, doctors live in their own reality, far apart from their college. In the real world of pain care where I reside, doctors everywhere and every day: 

  • Refuse to prescribe opioid medication for their patients

  • Abandon pain patients altogether because they need opioid medication

  • Drastically taper opioid medication against their patients’ wills and to the detriment of their health and quality of life

  • Stigmatize and discriminate against patients, who are labeled as addicted and in need of treatment

  • Refuse to accept new pain patients if they need opioid medication 

This picture of a doctor's window in Ontario reflects that reality:


What we experience in the real world doesn’t have any relation to what we are being told. I recently listened to a fascinating interview with Pulitzer Prize-winning journalist and author Christopher Hedges, who spoke about a “post-truth phenomena.”

“The facts don’t matter, we’re bombarded with lies…. Once facts are interchangeable with opinions, then it becomes an Alice in Wonderland kind of experience where nothing makes sense,” said Hedges

We are now living that experience, complete with mythology. The myth about pain patients is that they are cared for by an ethical medical establishment according to their own unique needs, and also recognized as valuable citizens deserving of human rights by a responsible government.

Mythologies were created by ancient peoples trying to make sense of the world. If you live in an alternate reality, you would need to create these narratives so that your distorted reality made sense to you.

For those of us whose bodies are pained and whose minds remain firmly planted on this earth, the myths about opioids are misrepresentations at best, pure hypocrisy and deceit at worst.

Sometimes peoples of the past got it wrong, but sometimes they got it right. Seventeenth century philosophers used the fundamental nature of knowledge and their reality to make sense of the world. Voltaire cautioned us not to take the myths too seriously.

"Those who can make you believe absurdities, can make you commit atrocities."


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 33 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.

Doctors Call for Urgent Review of Opioid Tapering Policy

By Pat Anson, PNN Editor

An open letter by healthcare professionals to the U.S. Department of Health and Human Services is warning that forced opioid tapering has led to “an alarming increase in reports of patient suffering and suicides” and calls for an urgent review of tapering policies at every level of healthcare.

“This is a large-scale humanitarian issue,” the letter warns. “New and grave risks now exist because of forced opioid tapering.”

The joint letter, recently published online in the journal Pain Medicine, is signed by over a hundred physicians, academics and patient advocates – including some longtime critics of opioid prescribing.  

Among the signatories are Keith Humphreys, PhD, a Stanford University psychologist who has warned of a global opioid epidemic “driven by the overuse of legal painkillers,” David Juurlink, MD, a board member of Physicians for Responsible Opioid Prescribing (PROP) who has called the War on Pain “one of the most spectacular failures of modern medicine,” and Red Lawhern, PhD, a strident patient advocate who has blamed PROP’s founder for “the deaths of hundreds of chronic pain patients.”


One thing these strange bedfellows have in common is that they all agree forced tapering has gone too far and has become “a genuine threat to a large number of patients.”

“Countless ‘legacy patients’ with chronic pain who were progressively escalated to high opioid doses, often over many years, now face additional and very serious risks resulting from rapid tapering or related policies that mandate extreme dose reductions that are aggressive and unrealistic,” the letter states.

“Rapid forced tapering can destabilize these patients, precipitating severe opioid withdrawal accompanied by worsening pain and profound loss of function. To escape the resultant suffering, some patients may seek relief from illicit (and inherently more dangerous) sources of opioids, whereas others may become acutely suicidal.”

We’ve shared the stories of several of these patients, including Bryan Spece, a Montana man who killed himself in 2017 after his oxycodone dose was abruptly cut by as much as 70 percent.

To avoid severe withdrawal symptoms, the CDC recommends a "go slow" approach to tapering, starting with 10% per week; while the Department of Veterans Affairs recommends a taper of 5% to 20% every four weeks. These tapering guidelines are not being followed by many doctors, who often feel pressured by insurance companies, regulators and law enforcement to lower doses, regardless of the harm it might cause a patient.

“Currently, nonconsensual tapering policies are being enacted throughout the country without careful systems that attend to patient safety,” the Pain Medicine letter warns. “We therefore call for an urgent review of mandated opioid tapering policies for outpatients at every level of health care — including prescribing, pharmacy, and insurance policies—and across borders, to minimize the iatrogenic harm that ensues from aggressive opioid tapering policies and practices.”

The letter also calls for pain management specialists and patient advisory boards to be included in future decisions about prescription opioids. They have often been excluded by federal agencies and commissions in previous decisions.

The letter in Pain Medicine is the second joint letter recently signed by healthcare professionals calling for a significant change in the nation’s opioid policies. A letter signed in October called on the CDC to make a “bold clarification” of its 2016 opioid guideline and to evaluate the impact it is having on pain patients — something the agency has not done.

Recall of High Dose Opioids Proposed in Canada

Marvin Ross, Guest Columnist

A citizen’s petition filed last year by Physicians for Responsible Opioid Prescribing (PROP) and other anti-opioid activists tried to get the FDA to ban high-dose opioid medications. Although the FDA has yet to decide on the petition’s merits, the very same proposal is now being made in Canada in an editorial in the Canadian Medical Association Journal (CMAJ).

Dr. David Juurlink, a Toronto physician and board member of PROP, penned the editorial with Matthew Herder, a lawyer from Dalhousie University in Halifax, Nova Scotia. They claim that high dose pills – such as those containing 100mg of morphine or 80mg of oxycodone -- are too risky and should be pulled off the market.

"There is little sign that the (opioid) crisis is abating in Canada," they wrote. "Ministerial recall of the most hazardous opioid formulations is a powerful regulatory tool that should be deployed to address one aspect of the crisis: the excessive prescribing of opioids for chronic pain."

Juurlink and Herder point to Vanessa's Law, which empowers the Canadian Minister of Health to recall drugs from the marketplace when they pose “a serious or imminent risk of injury to health.”

Vanessa's Law was introduced into Parliament in 2014 by Trevor Young, a government member, when his 15-year-old daughter tragically died from heart failure after taking a stomach drug called Prepulsid (Cisapride). That same year, Health Canada removed the drug, as did the EU and the UK. It is only available in the U.S. under special conditions.

Health Canada has always had the power to pull drugs off the market and issue safety alerts. As for Vanessa’s Law, Health Canada told me it “has not encountered a situation where it has been necessary to use its authority to order a mandatory recall.”


Obviously, there have been no valid safety reasons to limit high dose opioid prescriptions or it would have been done by now.

The CMAJ editorial claims that high dose opioids are potentially dangerous and that they increase the risk of accidental overdose, falls, fractures, cognitive impairment, worsening pain, motor vehicle accidents, and dependence. Of the five academic papers cited as evidence, four are authored by Juurlink himself or his research colleague at the Institute for Clinical and Evaluative Studies in Toronto. One of their papers was reported by this author in PNN as being erroneous and in need of correction. It was corrected, but it should have been retracted.

When the FDA sought public input into PROP’s petition, it received opposition from hundreds of patients and such groups as the American Academy of Pain Medicine (AAPM), the American Medical Association, the American Society of Anesthesiologists, and the American Pain Society. The AAPM said several of the petition’s underlying premises “are either false, misleading or speculative.”

“Perhaps the most serious problem with the petition is its cavalier assumption that in those patients in whom high doses are required, the change would be ‘unlikely to result in a significant inconvenience or hardship.’ Nothing could be farther from the truth. It is undisputed that many end-of-life patients require and benefit from opioid doses that are often quite high,” the AAPM said.

Other critics pointed out that taking high dose pills off the market would result in more lower dose pills being prescribed and stored in medicine cabinets, where they could potentially be stolen or diverted. It also raises the risk of a patient taking too many or too few low dose pills to get pain relief.

Dr. Juurlink has previously claimed that the long-term use of opioids results in an increase in pain called opioid induced hyperalgesia (OIH). He wrote about hyperalgesia in an earlier article in CMAJ, saying pain patients may think opioids are helping them, when they’re not.

“Why might some of these patients not be doing as well as they or their doctors perceive?” Dr. Juurlink asked.

Well, the answer is that Dr. Juurlink knows better. He knows better than the patient and he knows better than their doctor. He knows that they are not doing well. What can anyone say to that level of arrogance?

I did write a reply to his arguments in CMAJ and pointed out that his concept of hyperalgesia is simply a theoretical construct with no solid evidence in the research literature.

It is truly unfortunate and criminal that the response from some “experts” and politicians to the rising deaths we are seeing from overdoses is directed at pain doctors and their patients, when there is little evidence they are the main cause of the opioid problem.

As I pointed out in my last PNN article, the Minister of Health continues to blame the wrong people and is incapable of providing any evidence for her position. The coroner in British Columbia has already put out data on the source of opioids involved in overdose deaths. Fentanyl was involved in 3 out of 4 deaths and its source was illegal, not prescribed.

A very recent investigation by Global News Network in Canada found that the smuggling of illicit fentanyl into Canada via BC is the responsibility of a Chinese gang called the Big Circle Boys. The billions of dollars of profits they make is laundered through casinos in that province and to buy property in Vancouver. The police are aware but simply do not have the resources to counter any of this.

Instead, officials go after doctors and patients. One pain patient I am in contact with just e-mailed me that his doctor continues to reduce his opioids to the point that he is ready to leave this world.

“I can’t understand the thought process of my pain doctor who continues to taper away at my meds,” he wrote.

And neither can I.


Marvin Ross is a medical writer and publisher in Dundas, Ontario. He has been writing on chronic pain for the past year and is a regular contributor to the Huffington Post.

Pain News Network invites other readers to share their stories with us. Send them to

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.

12 Gifts of Knowledge About Chronic Pain

By Pat Anson, PNN Editor

Are you looking for a special gift for a loved one over the holidays? How about a gift to yourself? If you live with chronic pain -- or want to have a friend or family member have a better understanding of what you're going through -- here are 12 books that would make great gifts.

These and other books can be found in PNN’s Suggested Reading section. I recently added new books on kratom, stem cell therapy and medical cannabis, along with books on the history of pain and the opioid crisis.

There’s even a book that might make you laugh out loud. Who knew chronic pain could be funny?

Click on the book's cover to see price and ordering information. Pain News Network receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

Backbone: Living With Chronic Pain Without Turning Into One by Karen Duffy

If you believe laughter is the best medicine, then “Backbone” is for you. In this funny and inspirational book, Karen Duffy recounts her struggles with chronic pain from sarcoidosis and how she learned to cope with it through perseverance and spunk. Duffy also offers tips to healthy people on how to be supportive to loved ones who live with chronic pain.

The Kratom Cure: Potent Plant for Pain, Anxiety, Addiction by Joanne Hillyer

In this beginner’s guide to kratom, Joanne Hillyer examines both the benefits and drawbacks of kratom and how it’s been used for centuries in southeast Asia as a natural stimulant and pain reliever. Hillyer also explores the various strains of kratom, where to get them, and the growing controversy over its use. Is kratom a dangerous narcotic that should be banned or a helpful and healing herb?

Real Food Heals by Seamus Mullen

“Iron Chef” star Seamus Mullen thought his career as a chef was over when he developed chronic joint pain and was diagnosed with rheumatoid arthritis. Mullen restored his health by changing his diet — and now avoids foods that are processed or inflammatory. In this cookbook, the celebrity chef shares his recipes for healthy eating with natural ingredients.

The Story of Pain: From Prayers to Painkillers by Joanna Burke

This book examines the history of pain since the 18th century, when many people believed that pain was a message from God and submission to pain was seen as redemptive. Today, pain is seen more as an evil that needs to be fought with painkillers and other therapies. Joanna Burke says knowing the history of pain can help us understand our own suffering and that of those around us.

Living Pain Free: Healing Chronic Pain with Myofascial Release by Amanda Oswald

Myofascial release expert Amanda Oswald explains how fascia — the main connective tissue in the body — is the key to restoring pain-free health and motion. She explains how stretches, exercises and other self-care techniques can relieve migraines, headaches, jaw pain, frozen shoulder, neck and back pain, pelvic pain and conditions such as fibromyalgia.

Heal Me: In Search of a Cure by Julia Buckley

Travel writer Julia Buckley went a a global quest to find an alternative treatment for Ehlers-Danlos syndrome. Buckley underwent a voodoo exorcism in Haiti, was doused with chicken blood in South Africa, and met a California masseur who believes he is guided by angels. Buckley says the best advice came from a Brazilian faith healer who taught her how meditation can help relieve pain.

American Overdose by Chris McGreal

Chris McGreal traces the history of the opioid crisis in the United States — starting with Purdue Pharma and OxyContin — and how it spread from Appalachia to the rest of the country. Purdue is not the only bad actor in the opioid crisis, as McGreal is also critical of the healthcare industry, law enforcement, politicians and regulators who adopted opioid policies based on greed, ignorance and political agendas.

The Medicalization of Marijuana by Michelle Newhart and William Dolphin

This book explores changing public attitudes about marijuana and its transformation from a stigmatized illegal drug to a promising new medical treatment. Individual stories capture how patients are using cannabis to treat chronic pain and other medical conditions, and how doctors are slowly accepting it as a form of medicine.

Stem Cells: The Healing Revolution by Dr. Raj Banerjee

This book answers some of the most basic questions about stem cell therapy and regenerative medicine. Dr. Raj Banerjee, who founded a clinic in St. Louis nearly two decades ago, shares the testimonials of his patients while exploring the history, challenges and benefits of stem cell therapy and how it can be used to treat a wide range of chronic pain conditions, including arthritis and degenerative disc disease.

Dopesick by Beth Macy

Journalist Beth Macy looks at the opioid crisis from multiple perspectives, including physicians and pharmacists, law enforcement and attorneys, community leaders and drug dealers. Macy examines opioid addiction with compassion and concern, but perpetuates many media-driven myths about pain patients and prescription opioids.

Unlearn Your Pain by Dr. Howard Schubiner

This is the third edition of Dr. Howard Schubiner’s book on the “Mind Body Syndrome” — the theory that many chronic pain conditions are the result of unresolved stress and emotional issues. Schubiner explains how to rid yourself of pain without drugs, surgery or psychotherapy by “unlearning” your pain.

The Furnace of Fire by Elaine Ballard

Elaine Ballard suffered a severe back injury when she was 22 years old. Fifty years later, she is confined mostly to bed and recently learned she has arachnoiditis. Ballard wrote this book to help educate other pain sufferers about arachnoiditis and to share how her Christian faith helped her through many difficult times and pain flares.

If there is a book or publication that's helped you manage chronic pain and might help others, let us know.

Taking Control of My Disability Case

By Mia Maysack, PNN Columnist

This stack of papers may not look like much, but it is my medically documented life beginning in the year 2002.


I personally highlighted them, so I can confidently report that the words “headache” and “migraine” are mentioned hundreds of times throughout.

I've been in the process of pursuing Social Security disability for about three years, which is not uncommon. Many have abused the system and there's also a high volume of claims being submitted and reviewed every day.

It took me a long time to even get to the point of filing for disability.

What does filing say about me as a person? Will I be judged? They probably won't even believe it. There are so many out there that need and deserve this more than me.

I still have those thoughts from time-to-time, even though my chronic migraines and cluster headaches have impacted every aspect of my life in a negative way – including employment.

I do not take the collection of denial letters I have received personally, as they've got to do what they can to weed out whoever isn't entirely legitimate. I know that I am, so I'll keep fighting.   

In recent months, another denial letter came. They acknowledged I am unwell but still deem me “well enough.” I decide to appeal immediately, as they only give you 60 days to do so. I also hired legal representation to help me through the process.

When I called them to check on the progress of my case, their tone felt dismissive. I would get put on hold before finishing a sentence or receive roundabout answers to basic questions. I’d also be reminded -- as if I wasn't already aware -- that disability court dates are scheduling 23 months from now.

I don't mind waiting, considering the fact I have no choice.  But it seemed as though I was being slow walked on a hamster wheel and not moving forward at all. This week I chose to contact Social Security directly and they informed me that, according to their records, there is no appeal on file for me at this time.

What does this mean, exactly?  In short, my legal representatives have not been covering their responsibilities to me as their client. I've been scraping by with 26 cents to my name while relying on their word, which I've now been convinced means next to nothing. 

I asked a Social Security representative what my next steps should be to take control and clean up this mess. He instructed me to visit their website and file an online appeal, which has since been done. Since I can’t account for where exactly all the paperwork I've been sending to my "help" has been going, I plan to stop in my local Social Security office to hand my stack of medical records directly to them.

We are our own best advocates, but how do I advocate for myself?  This is one way. I am the one who knows and understands the extent of how this debilitation has derailed just about every goal or dream I've set my sights on. But I won’t let that define me. I am more than my illness and won't allow my case to be dismissed.

I'm aware that representing myself may very well set this process back even further, but I've come to the realization that if we want something done right, we've got to make it happen ourselves.

At first, I felt disheartened because this seems like a full-time job in itself. But when others do not hold up their end, I now see this as an opportunity to raise awareness, address policy, educate and ultimately claim ownership of my own life. Now and in the future.


Mia Maysack lives with chronic migraine, cluster headaches 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.

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.

New Spinal Discs Grown from Stem Cells

By Steve Weakley

Scientists have moved a step closer to being able to replace degenerated spinal discs with new ones grown in a laboratory from a patient’s own stem cells.

Spinal discs are soft tissues that cushion the vertebrae and enable our backs to conform and perform the tasks of everyday movement. Over time, the discs can wear out and cause the bones of the spine to rub together and pinch nerves. This disc degeneration is one of the leading causes of back pain.

University of Pennsylvania researchers reported in the journal Science Translational Medicine that they have successfully grown and implanted replacement discs made from the stem cells of goats. The cells were grown in a laboratory in a disc shaped form and then implanted into the necks of goats.

After 8 weeks, MRI’s showed that the replacement discs functioned just as well or better than the goats’ original cervical discs. The implanted discs were left in for 20 weeks and became part of the animals’ own tissue.

Researchers told Medical News Today that this was a major step forward from previous experiments in which they implanted discs into rat tails. Goat discs are more comparable to humans in size, structure and function.

"I think it's really exciting that we have come this far, from the rat tail all the way up to human-sized implants," said co-senior author Harvey Smith, MD, a professor of Orthopaedic Surgery at the Hospital of the University of Pennsylvania.  

"Using a true tissue-engineered motion-preserving replacement device is not something we have yet done in orthopaedics. I think it would be a paradigm shift for how we really treat these spinal diseases and how we approach motion sparing reconstruction of joints.”


Current treatments for degenerative discs include spinal fusion or artificial implants.  Both have limited benefits and usually cannot restore full functionality. Artificial implants also break down and have be replaced.

"The current standard of care does not actually restore the disc, so our hope with this engineered device is to replace it in a biological, functional way and regain full range of motion," said co-senior author Robert Mauck, PhD, a professor for Education and Research in Orthopaedic Surgery.

"This is a major step, to grow such a large disc in the lab, to get it into the disc space, and then to have it to start integrating with the surrounding native tissue. That's very promising."

The researchers say the next step is longer and more extensive tests on goats, before working on a bioengineered human model.  If those tests are successful, they eventually hope to test the implants in human trials.

"We have every reason to be optimistic, and if it works, we can change the way we think about treating some of these disc diseases," said Smith.

Rising Overdoses Show CDC Guideline Not Working

By Pat Anson, PNN Editor

Rising suicides and drug overdose deaths led to another decline in U.S. left expectancy last year, according to two sobering reports released by the Centers for Disease Control and Prevention.

Americans born in 2017 are expected to live 78.6 years, about one month less than those born in 2016. Life expectancy has fallen or remained flat in the U.S. for three consecutive years. The UK is the only other country in the industrialized world where life expectancy is dropping.

“Tragically, this troubling trend is largely driven by deaths from drug overdose and suicide. Life expectancy gives us a snapshot of the Nation’s overall health and these sobering statistics are a wakeup call that we are losing too many Americans, too early and too often, to conditions that are preventable,” CDC director Robert Redfield, MD, said in a statement.

Redfield, who almost lost a son to a drug overdose, has been nearly invisible since becoming CDC director in March. He has previously called the opioid epidemic “the public health crisis of our time” and pledged to “bring this epidemic to its knees.”

So far, the CDC’s strategies, including its controversial 2016 opioid prescribing guideline, are not working. As PNN has reported, the guideline may even be contributing to the rising number of suicides and overdoses.

Over 70,200 people died of a drug overdose in 2017 – the highest number on record and nearly a 10 percent increase from 2016. Deaths involving illicit fentanyl and other synthetic, mostly black market opioids surged 45 percent, while deaths involving natural or semisynthetic opioids, mostly painkillers such as oxycodone and hydrocodone, remained flat.  The rate of heroin deaths also remained unchanged.



CDC researchers noted that their data is flawed. Drug overdose deaths often involve multiple drugs, and “a single death might be included in more than one drug category.” A death “involving” a specific drug also doesn’t mean that drug was the cause of death. It only means the drug was present at the time of death.  The competency of medical examiners and coroners who complete death certificates can also vary widely from state to state.

The CDC reported that over 47,000 people committed suicide last year, nearly 4 percent more than in 2016. Suicide is the 10th leading cause of death among all age groups – and the 2nd leading cause of death among adolescents and young adults aged 10 to 34.

Reports Ignored Role of Antidepressants, ADHD Drugs

The CDC reports did not explore the role of drugs used to treat depression, anxiety and attention deficit hyperactive disorder (ADHD) in either suicides or overdoses.

According to a recent study by the Substance Abuse and Mental Health Services Administration (SAMHSA), Xanax, Valium, Adderall and other psychotherapeutic drugs were involved in more overdoses in 2016 than prescription opioids.

A report this week from the Research Abuse Diversion and Addiction Related Surveillance System (RADARS), which tracks illicit drug use nationwide, underscores that emerging trend. RADARS found that the abuse of ADHD stimulants now exceeds the abuse of prescription opioids by Americans aged 19 or younger. The rising trend in “intentional exposures” to stimulants – which includes suicide – began in 2010 and is accelerating.    



“There have been more pediatric exposures involving stimulants than pediatric exposures involving natural/semi-synthetic opioid analgesics in every quarter since 4th quarter 2014. The increase appears to be driven by exposures where the intent of the patient was suicide,” the RADARS report found. 

“Multiple factors may contribute to the observed increase in suspected suicide exposures. The increase may reflect overall increases in suicides in the United States. It may also be a result of increases in stimulant misuse.” 

In the 2nd quarter of 2018, there were 822 reported cases of intentional exposure to stimulants among young people, while there were 503 cases involving opioid analgesics.