The Other Victims of the Opioid Epidemic

By Katie Burge, Guest Columnist

Imagine the fear, frustration, helplessness and anger you might feel upon learning that your doctor cannot treat you to the best of his or her ability because they’re afraid of being arrested. 

I don't have to imagine that because I am a chronic pain patient with a degenerative spinal condition, plus severe osteoarthritis and fibromyalgia; each of which cause severe chronic pain 24/7. Combined, they can make simple tasks like getting dressed in the morning sheer torture.

Pain patients are the other victims of the so-called opioid epidemic, the ones the media usually don’t mention unless they're blaming us for other people's drug usage. 

Patients are being forced to live in agony and, as a result, increasingly lose their lives due to catastrophic medical events, such as stroke, heart attack and even suicide.

These can all be triggered by the physical, mental and emotional pressures of trying to survive with inadequately treated chronic pain.

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Why?  Because politicians and bureaucrats (who refuse to admit the government is completely impotent at controlling the proliferation of illicit drugs) have managed to sell the public on the ridiculous premise that refusing medically necessary medication to one group of people will somehow alter the behavior of another group, and handily end America's drug crisis.

This approach simply does not work. Torturing vulnerable pain patients by refusing them life-giving medication will never make the slightest dent in the illegal drug trade because, sadly, people who want to get high will find something somewhere that will enable them to do so. 

Also, most of the prescription opioids that people abuse DO NOT come from doctors or pain patients. Less than one percent of legally prescribed opioid medication is diverted.  People in true pain are not going to suffer additionally by sharing or selling their medication. And doctors are not as careless with their prescription pads as the powers-that-be would like you to think.  

Nonetheless, the entities that control doctors’ licenses to prescribe opioids have yielded to political pressure by ordering doctors to either cut back on pain medication to the point that it's ineffective or stop opioid treatment altogether, regardless of patient need or outcome.

Inadequately treated chronic pain has stolen a great deal of my independence and quality of life, and though I hate the idea of taking pain medication at all, my greatest desire is to simply be able to fully participate in my own life again.  I will never be pain free, but I long to be able to play with my grandchildren, go to the theater or sit through an entire movie (and still be able to walk back to my car).

The mainstream media is also responsible for the ridiculous narrative that opioids have no legitimate clinical use and are immediately addictive. The result of this bias and hyperbole is that most folks believe outlawing the legitimate medical use of opioids can only be a good thing. Society teaches us that pain is somehow shameful.  We must “suffer in silence” and learn to control our pain without complaint or medical intervention. 

With such an abundance of myth and misinformation, it's no small wonder that actual facts about pain tend to get lost in the mix. Please allow me to share a few:

First, many overdose deaths are made to sound as though they were caused by a single prescription or even a single dose of opioids, when they are actually the result of a mixture of different medications, street drugs and alcohol. 

Second, chronic pain affects more Americans than heart disease, cancer and diabetes combined.  And studies have repeatedly shown that less than 4% of those who take opioid medication for pain become addicted.  They might develop a dependence or tolerance, but that occurs with many medications.

Physical “dependence” simply means that, if a drug or substance is stopped abruptly, the body will react by exhibiting withdrawal symptoms.  “Tolerance” occurs over time, as the dosage of some drugs might need to be adjusted as the body grows tolerant to its effects. Neither of these conditions is unique to opioids, nor are they necessarily indicative of addiction -- which is characterized by compulsive drug seeking behavior and use, despite harmful consequences.

Personally, I believe the question of addiction simply comes down to motive.  If your primary motive in taking opioids is to get high, you might be a drug addict.  If your only motive is pain relief and once that relief is achieved you do not increase the dose, you are not a drug addict.

Drug abuse is a complex social issue that has no easy fixes.  It should not, however, be confused with the medical management of chronic pain.  All life is precious and should be valued and protected, but not at the expense of others.

So, the next time your favorite TV show has a story line about someone going to the hospital and being transformed into a raving drug addict, or you hear yet another biased news story about opioids, do something about it.  You can help save lives by contacting the source of those fallacies and insisting that they tell the whole truth about the opioid crisis. Call them. Write a letter. Send an email.

We desperately need your voice, your prayers, your empathy and your compassion.

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Katie Burge lives in south Mississippi, which she calls a “a veritable wasteland” for pain treatment. 

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

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

Can Stem Cells Treat Lyme Disease?

By A. Rahman Ford, PNN Columnist

In a recent article in Scientific American, author Mary Beth Pfeiffer paints a startling portrait of Lyme disease in America.  She describes the “peril and menace” now associated with many forests, parks and even some backyards -- landscapes that Lyme disease-carrying ticks inhabit in ever-increasing numbers. 

“Although children are the most frequently diagnosed group and thousands of infected patients develop long-term infirmity every year, little has been done to curb the spread of the ticks,” Pfeiffer wrote. 

According to the article, the primary reason for the explosion in Lyme disease is that mainstream medicine continues to labor under the long-disproven myth that the disease is easy to diagnose and treat.  In truth, diagnosis is complex, and treatment options are woefully inadequate and sometimes even dangerous. 

According to the Centers for Disease Control and Prevention , Lyme disease is the most common vector-borne illness in the U.S.  It is transmitted by the bite of a blacklegged tick, or deer tick, that is infected with Borrelia burgdorferi or Borrelia mayonii bacteria. 

Deer ticks tend to thrive in woody or grassy areas.  Although most cases are reported from northeastern states like New Jersey, Connecticut and Maryland, states like Minnesota and Wisconsin have also reported cases. The geographic distribution seems to be expanding, along with an increase in the number of counties reporting Lyme cases.

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In 2016, there were over 36,000 confirmed or probable cases of Lyme disease, although the actual number may be ten times as high. Common symptoms include a small red bump at the site of the tick bite, which can expand into a rash that forms into a bull’s-eye pattern.  Flu-like symptoms are also common. 

If Lyme disease is left untreated, multiple symptoms may emerge which may be dermatological, musculoskeletal, neurological and/or cardiovascular in nature.  Symptoms can include severe joint pain and swelling, meningitis (swelling of the brain), paralysis, numbness, weakness of the limbs and impaired muscle movement.  These symptoms can last for months or even years.  Because they tend to mimic the symptoms of other diseases, Lyme is often misdiagnosed.

There is no consistently reliable test for Lyme disease and diagnosing it can be tricky.  Oftentimes, patients do not present with a rash or any other common symptoms.  Laboratory tests, like enzyme-linked immunosorbent assay (ELISA), which are designed to detect bacterial antibodies, can give false positives.  And the Western Blot test, used to confirm ELISA results, has no standard criteria for interpretation.

Treatment for Lyme disease is likewise problematic.  The standard course of treatment is a 14 to 21 day course of oral antibiotics.  If the patient presents with neurological symptoms, intravenous administration may be preferred.  According to the Mayo Clinic,  “after treatment, a small number of people still have symptoms, such as muscle aches and fatigue,  the cause of these continuing symptoms, known as post-treatment Lyme disease syndrome, is unknown, and treating with more antibiotics doesn’t help.”

However, many holistic practitioners disagree, contending that the number of patients with post-treatment symptoms is far larger than estimated, and an extended course of antibiotics – or other treatment modalities – may be warranted.  Several of these physicians have had their licenses revoked, faced other disciplinary actions for ethics violations, or even been sent to prison.

Stem Cells and Lyme Disease

Given that the standard course of treatment fails many Lyme disease patients, alternative therapies are needed.  Stem cells may be a viable option to treat symptoms associated with Lyme disease syndrome because they are inflammatory in nature.  Mesenchymal stem cells, which may be readily obtained from bone marrow or adipose (fat) tissue, are known to possess immunomodulatory properties.  This means they could potentially lower inflammation and resolve the stubborn persistent Lyme symptoms that refuse to respond to conventional antibiotic therapies. 

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KELLY OSBOURNE

Although the evidence for the efficacy of stem cell therapy in treating Lyme disease is largely anecdotal, the stories are compelling.

In one high-profile case, former E!’s Fashion Police host and Project Runway Junior judge Kelly Osbourne details her experience with Lyme disease in her memoir.  

In 2004, Osbourne was bitten by a tick from a reindeer at her father Ozzy’s 56th birthday party.  As a result of the bite, she suffered for a decade with “traveling pain” from a sore throat and stomach aches, which eventually led to a seizure on the set of Fashion Police.

 Osbourne was later diagnosed with epilepsy and prescribed drugs that, in her words, “turned her into a zombie.”  She went from taking Ambien to Trazodone to painkillers to anxiety medication.

After visiting an alternative medical practitioner, Osbourne tested positive for Lyme disease.  Rather than try to treat the disease with antibiotics, she went to Germany for stem cell therapy.  That therapy was a success.  In her words, “I was experiencing emotions and feelings again.” 

Osbourne initially kept quiet about what she calls her “cure” because she feared retribution from pharmaceutical companies.  She has since become an advocate for stem cell therapy.

Patients suffering from chronic Lyme disease need options.  Stem cell therapy could be one of them.

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

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

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

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A Bad Bill That Won't Fight Opioid Addiction

(Editor’s note: Last month, PNN reported on the “Post-Surgical Injections as an Opioid Alternative Act,” one of dozens of bills Congress is considering to combat the opioid crisis. HR 5804 would raise Medicare’s reimbursement rate for epidurals and other spinal injections used to treat post-surgical pain. The bill – which was lobbied for by doctors who perform the procedures – has drawn little public scrutiny and was rushed through a congressional committee after one brief hearing.)

By Denise Molohon, Guest Columnist

Raising the reimbursement rate for post-surgical spinal injections would dramatically increase healthcare costs and disability rates. This is based on historical research and medical evidence.

A harmful procedure should never be considered a “standard of care” by the medical profession. Yet that is what has happened with epidural steroid injections (ESIs) and Congress is going along with it under the guise of preventing opioid addiction.

“In the United States, more than ten million epidural steroid injections are delivered each year, a number that makes them the bread and butter of interventional pain management practices,” wrote Cathryn Jakobson Ramin, author of Crooked: Outwitting the Back Pain Industry and Getting on the Road to Recovery.” 

The National Health and Medical Research Council of Australia warned in 1994 that the risk of a dural puncture of the spinal cord during an injection was at least 5 percent. It also cautioned that “particular care must be taken if attempting an epidural injection in patients previously treated by spinal surgery.”

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In such cases, an epidural steroid injection (ESI) carries a very high risk of direct entry into the subarachnoid space, which can have catastrophic consequences to a patient, including the development of Adhesive Arachnoiditis, a chronic, painful and disabling inflammation of spinal nerves. I live with that condition, along with a growing number of other patients.

“The incidence of arachnoiditis has risen about 400% in the past decade,” says Forest Tennant, MD, Editor Emeritus of Practical Pain Management.

Between 2000 and 2011, there was a staggering 665% increase in the rate of lumbar and sacral epidural injections among Medicare beneficiaries. The data also show that there were enormous increases in spinal injections performed by physical medicine and rehabilitation specialists.

“We are doing too many of these, and many of those don’t meet the proper criteria,” Dr. Laxmaiah Manchikanti told The New York Times in 2012.  Manchikanti runs a pain clinic in Paducah, KY and is chairman of the American Society of Interventional Pain Physicians – which lobbied for HR 5804 and gave campaign contributions to its sponsors. He told The Times about 20 percent of doctors who perform ESIs are not adequately trained.

The growing use of spinal injections has not resulted in better care. Dr. Richard Deyo, a professor of family medicine at Oregon Health and Science University, told the The Times that “people with back pain are reporting more functional limitations and work limitation, rather than less.”

HR 5804 is more bad policy piling on top of an already failed campaign of opioid legislation -- much of it based on misinformation provided by the CDC -- that will perpetuate the tsunami of needless pain and overdose deaths. 

It needs to stop. Today. 

When profit is one of the major motivating factors of those seeking new legislation, those creating the legislation and those lobbying for it need to be questioned. Profitability should never play a factor in any treatment plan. However, it now seems to dominate the American healthcare system from diagnosis to testing to medication. 

This needs to change.

Medicine needs to be removed from the hands of lobbyists, PAC’s, and politicians and put back into the hands of the personal physician and his or her patient. It should be as individualized and unique as the medical needs of each patient. 

It truly is that simple. 

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Denise Molohon was disabled with Adhesive Arachnoiditis after multiple spinal surgeries.

Denise is a patient advocate for ASAP, the Arachnoiditis Society for Awareness & Prevention. She and her family live in Indiana.

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.

Life After Pain Meds

By Dana Stephenson, Guest Columnist

It was a warm October afternoon in 1997 when my boyfriend called and asked if I wanted to go for a ride. Being from the northeast and motorcycle season was almost coming to an end, I said sure.

I often wonder how my life would have played out if I had just stayed home that day.

It started out as a normal ride with another friend, until the friend took off down a back road. Being just 18, my boyfriend took off after him. Long story short, the road turned and we did not. We slammed head-on into a telephone pole at 85 mph. The brakes on a motorcycle don't work so well when the wheels aren't touching the ground.

I was airlifted to a hospital and was in critical condition for several weeks. I spent 10 months in the hospital and had at least eight surgeries for a fractured spine and pelvic bone, pierced colon, and bruised heart, lungs and kidney. On the outside, I only had a few scratches but I was lucky to be alive at all, considering I wasn't wearing a helmet. 

Sadly, the worst was yet to come.  I kept asking the nurses, “Where’s Mike?” The nurses would act like they couldn't hear me. I understand now they were just doing their job, but at the time I thought I was going crazy.

Three days into my hospital stay, I asked my dad the same question. He gave a simple reply, four words that I'll never forget: "He didn't make it."

Not only was this my first experience with broken bones, surgery and stitches, it was also my first experience with death.

Pain medications were necessary, along with some counseling. I made it out of the wheelchair, off the walker, and then finally the crutches. The doctors called me a walking, talking miracle.

After a few years they transferred me to pain management and I slowly began developing a new problem. To people that didn't know my story, I appeared to be normal. Pharmacists always gave me the impression that they thought I was a drug addict. Why is this young, healthy-looking girl taking such high doses of painkillers? Over the years this began to bother me more and more.

Ten years after my accident, I finally decided to get a spinal fusion, hoping the pain would go away and the social judgement would finally stop. Well, that didn't go as planned. In the 10 years since my initial fracture, I had developed scoliosis. During surgery the doctor pulled so hard on my spine, trying to get it as straight as possible before screwing it in place, he ended up re-fracturing it. Now I was in worse shape than before. 

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DANA STEPHENSON

Yet a new chapter of my life began. I had to accept that at age 29, I was going to have to file for disability. After a two-year struggle they approved my application, after first denying it because of my age. That's not even legal.

After 15 years of being in pain and treated like a junkie, I had enough. It was time to get off all pain medication. I went the Suboxone route and it definitely helped with the withdrawals. After a few years I quit that too.

Of course, I'm still in a lot of pain but taking the medications again is just not worth it to me. I moved away from home, so I wouldn’t be tempted to bum pills off my old connections.

I can honestly say I haven touched a pain pill in over 5 years. It's not easy, but I'm going to be in pain with or without the pills.

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Dana Stephenson lives in Florida.

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

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

What Chronic Pain Really Costs

By Pat Akerberg, PNN Columnist

I recently came across yet another dehumanizing equation about the cost of pain solely based on economic factors such as healthcare costs and loss of employee productivity.  What troubles me is that the human side is missing – the untold toll pain takes on people who are afflicted.

I set out to search for any published United States studies on the topic that address the human dimension of pain too.  To my dismay, a 2009 article in the journal Reviews in Pain was the most recent one I could find that discussed the economic and quality of life impacts of pain. 

A handful of other publications that acknowledge the detrimental effects pain can have on a human life were originated in other countries.

In the 2009 article, I was struck by this powerful closing quote taken from an editorial penned by Henry McQuay, professor of Anaesthetics at Oxford University:

“Chronic disease comes low on the political priority list, and chronic pain just gets forgotten. The burden for the sufferers, their families, and society is substantial and merits better treatment. The mark of a gracious society is how it treats those with least voice. That chronic pain puts people at the bottom of the pile is precisely why we should be agitating on their behalf for a fairer share of the medical resource cake.”

The nine-year gap between that plea and current reality is shameful, given the prevailing anemic attitude in the U.S. that champions the under-treatment of pain.

From a humanistic perspective, pain exacts a much steeper price than just the collective economics that get reported. Given short shrift are the countless human beings behind those collective economics who are paying dearly in pain’s wake. 

A generic equation about what pain costs in dollars fails to factor in serious quantity and quality of life dimensions or give them the weight and relevance they deserve. The result is lifeless and one dimensional.  It sucks the dignity and human cost of pain right out of it.

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The real bottom line about pain has to include the pervasive impact pain has on a person’s quantity and quality of life; such as lost time, lost energy/capacity, lost opportunities and sacrifices, altered self and relationships, financial losses and more.

Lost Time

Because the losses in every aspect of my life are ongoing, the full cost is unknowable.  But given that life is most precious and our time here invaluable; lost time is perhaps the most valuable, irretrievable cost to our lives.

It’s been nine years since my surgery for trigeminal neuralgia failed, permanently damaged my nerve and forever sensitized my central nervous system.  That translates to debilitating facial pain that delivers volleys of lightning strikes to the roots of my teeth when I talk or chew. 

Losing nine years of life quantity and quality is an unaffordable loss for me.   It’s no wonder then that no one likes to talk about the subtraction effect that ongoing pain has on his or her lifetime.

Lost Energy/Capacity

Energy loss is another way to calculate the price of living with an intractable pain condition.  Christine Miserandino writes about measuring her energetic capacity by how many spoons she has to spend in any given day.  Her theory is that when our spoons are gone; there’s no energy left to use and downtime is essential. 

I find that the energy drain of unrelenting neuropathic pain, coupled with life’s daily demands, often render me out of spoons by about 2 pm each day.  That means I start many days in arrears. 

Lost Opportunity and Sacrifices

There’s a hefty price tag attached to the many potential opportunities that intractable pain stops dead in their tracks.

Sometimes grieving over what might have been can be just as difficult as coping with what is. 

If you had to end your career early, curtail socializing, give up traveling, limit driving, miss important time with family/friends, or narrow your operating world significantly, then you understand sacrifice, limitations and/or lost opportunity.  

Altered Self and Relationships

A difficult personal price I’ve had to pay for pain is wondering who I might have become if I had never been limited by it. 

The other half of that is losing prized parts of ourselves, while being left with less desirable substitutes.  It really hasn’t been a fair exchange.

The underlying hits to heart and soul add up too for the courage, fortitude and considerable patience it takes to try to find ourselves again, craft a new normal and reach some level of acceptance. 

The cost of what has changed about me has also spread outward to my significant others.

Financial Losses

We all know pain costs too much money that could have been spent on better things or even saved.  While often coping with the stress of lost income, the bills for prescriptions, treatments and insurance quickly add up.

Not only does a protracted painful condition regularly send you a bill to be paid in full; when we’re overdrawn it has ways of challenging our will, perseverance, hope, faith, and even courage at times. 

An unforgiving creditor, pain offers no grace period, understanding or consideration.  It expects to be paid in time, energy, money or sacrifices, affordable or not.

Pain never skips a bill for what it takes, like some twisted accounting mistake. 

Whenever some bureaucratic, administrative, regulatory, or government agency assumes that they actually know the full cost of pain, I’d like to send them a bill for repeatedly excluding the human costs of serious pain and doing little about it.

For starters, I’d charge for putting up with their half-baked equations that don’t tell the whole story, their biased and anemic pain treatment guidelines designed to under-treat pain patients and threaten doctors, and their unconscionable ignorance endorsing Tylenol for serious pain.

In fairness, it needs to be a bill that they can’t afford to pay either.

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Pat Akerberg suffers from trigeminal neuralgia. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Facial Pain Research Foundation.

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.

Wear, Tear & Care: Second Thoughts About SpineGym

By Jennifer Kilgore, PNN Columnist

I wrote a story last year about an IndieGoGo campaign for the SpineGym, an exercise device that helps people alleviate lower back pain by developing their back and abdominal muscles.

The device sells for $198 and, according to the SpineGym website, is the most successful Finnish product ever to use international crowdfunding sources.

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INDIEGOGO

I received a complimentary version of the SpineGym to review, and I really, really liked it. The product itself is helpful, and I feel that it performs as advertised.

I haven’t developed a six-pack or anything, but it does seem to target some problem areas in my back that don’t get exercised enough by traditional means.

Then I started noticing some Tweets in which I’d been tagged. Thousands of people who invested in SpineGym or reserved it for loved ones are still waiting for their devices.

“Ordered a ‘spine gym’ via @Indiegogo in 2016, still have not received my ‘gym’ nor any answer. They have been anything but forthcoming, to the point of evasive. I am trying to just get an answer, but nothing but erroneous updates. Terrible,” said one Tweet.

“Bought mine for my dad. It will be two years in July. It would have helped him. Now too late,” said another Tweet.

SpineGym received an astonishing 928% in funding, almost $1.8 million. The campaign closed two years ago, and yet to date only about 200 of the 5,546 backers on IndieGogo and 2,255 on Kickstarter have received a SpineGym.

The company’s website still offers the product for sale and says that “SpineGym is used widely around the world to strengthen the core and to improve physical ability and well-being.”

‘Not Going to Put Up With This’

Meanwhile, angry backers have not received the product they were promised.

“If I hear nothing by Friday as I said, I’m putting a formal complaint in with my credit card company to get my money back,” a backer wrote on IndieGogo last week. “Not going to put up with this.”

While sites like IndieGogo are fundraising sites, not sale sites, the question must be asked: What happened to the $1.7 million raised on IndieGogo and the $460,000 on Kickstarter?

Why is SpineGym available for commercial sale but not available to backers, who’d provided money for the venture in the first place?

I sent an email to SpineGym’s customer service, asking what the problem is. Many of the individuals with whom I’ve corresponded on Twitter said they’ve tried emailing customer service and filing complaints, only to receive silence in response.

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INDIEGOGO

I received a response that same day. SpineGym's explanation (with no name attached to their email) was that the initial interest far overpowered their tiny team, and that this meant “re-designing the product, re-designing the manufacturing [sic] re-planning the chain of sub-contractors processes as well as the logistic chain.” 

They also said they are currently looking for an additional customer service representative to handle the “huge amount of questions” from backers. They do state, however, they are “100% sure” that backers will receive their products, though it is taking far longer than they’d anticipated.

There is little explanation as to why such overwhelming interest warranted the entire redesign of their product. SpineGym noted delays regarding additional manufacturing issues, namely the baseplates, which were substituted with a new laminate more resistant to scratching and dirt. The company says new production samples are under final tests “at this very moment” and, if they pass review, will be shipped to backers this month.

At present, backers have little recourse aside from contacting SpineGym’s customer service and opening a claim. IndieGogo and Kickstarter have no options available, given that the campaigns have ended and all the money raised have been disbursed to the company. Technically, the campaigns were successful -- very successful -- so it’s not a matter of capital. It’s a matter of principle.

Despite my best intentions, I recommended a product that swindled backers out of hundreds of dollars. There is no reason why a plastic mat with two swiveling arms should take this long to create, regardless of redesigns, revamps, or whatever else SpineGym claims.

I will keep an eye on this situation and will hopefully have a better report soon. I recommend that backers keep up the pressure.  

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Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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.

Roseanne Shed Light on Chronic Pain

By Barby Ingle, PNN Columnist

The reboot season of the “Roseanne” show recently wrapped up and there won't be another. Lead actress Roseanne Barr put out a racist tweet that went viral and ABC immediately canceled her show.

Although Barr’s tweet -- or ‘bad joke’ as she calls it --- was a big disappointment to her fans and everyone involved in the show’s production, I think she did some good in Season 10. It shined a light on how chronic pain can affect a patient and their family, and how important access to proper and timely mental and physical care really is.

Roseanne (both her character and in real-life) is a chronic pain patient. As a child, she suffered a traumatic brain injury. Over the years she’s shared her mental health challenges, which include nervous breakdowns and a multiple personality disorder.

"I did have a few nervous breakdowns and was hospitalized several times. It was very difficult. Fame was difficult too," Barr said in an interview with 20/20.

In a 2015 interview with The Daily Beast, Roseanne talked about using marijuana to help relieve pain.

“It’s a good medicine, you know,” she said. “I have macular degeneration and glaucoma, so it’s good for me for that because I have pressure in my eyes. It’s a good medicine for a lot of things.”

Two years ago, Roseanne began using a cane after she slipped and broke her kneecap in three places during a trip to San Francisco's Golden Gate Park. Roseanne was prescribed opioid medication for her knee injury and her real-life story was an impetus for addressing chronic pain and opioids in her show this past season. Her character also had a knee injury and used a cane.

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ROSEANNE BARR

Throughout the final season, Roseanne's knee injury and chronic pain were woven into the storyline. The last two episodes were the hardest hitting. I have read articles that talk about how she was trying to share the plight of people living with addiction. I have another take on that. I believe Roseanne was actually trying to show what many pain sufferers go through because of the lack of proper and timely care.

I watched and saw a woman in real pain. Roseanne and her husband Dan worked together to overcome some of the invisible challenges of living with chronic pain. They installed an electric stair chair in Episode 3. I get this. When my husband and I chose our house, we chose one with no steps. I was still in a wheelchair at the time  and needed to get around the house without my husband’s help.

Roseanne couldn’t move to a new house due to financial challenges her TV family faced for over 20 years. She helped demonstrate how people in chronic pain must make adjustments to their living spaces to accommodate mobility.

Throughout her final season, Roseanne used a cane, went to physical therapy, and used mindfulness exercises. She even brought up that she didn’t have the money to have a procedure on her knee or to even see the doctor as often as she needed. I get that. The treatments that help me the most are not covered by my health insurance.

I have hosted personal fundraisers with family and friends to help raise the money I needed to get proper care. I’ve also had to make many appeals to my insurance company over the years. I had to find options that work for me, just as Roseanne has in both real life and as her character.

In one episode, she didn’t have enough pain pills and wondered if someone was stealing them. It turned out that Roseanne was hoarding them. She was not taking extra pills as a person with addiction would do. She was stockpiling them because she was not receiving adequate pain care and didn’t know when the pills would be cut off or how long she would need to make them last.

Two and a half million Americans live with opioid addiction, but we must never forget that 100 million will face chronic pain at some point in their lives and 30 million will need opioid pain medication. The vast majority will never abuse it.

Roseanne Barr and her show did a great job showing the limitations of our healthcare system and what happens as result of poor care. I was looking forward to next season and seeing what happened to Roseanne’s health and whether her treatment improved.

We need more media examples of what the challenges are in chronic pain and how to overcome them. I hope to see them addressed properly in future TV shows so that we change the lives of many Americans in need of better healthcare.  

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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.

Sessions: ‘Drug Overdoses Finally Started to Decline’

By Pat Anson, Editor

There are signs – very tentative signs –  that the U.S. is making progress in the so-called opioid epidemic. Attorney General Jeff Sessions alluded to some of them in a speech on Friday.  

“New CDC preliminary data show that last fall, drug overdoses finally started to decline.  Heroin overdose deaths declined steadily from June to October, as did overdose deaths from prescription opioids,” Sessions said at the Western Conservative Summit in Denver.

Overdoses from heroin and prescription opioids did indeed fall by about 4 percent during that five-month period, but what Sessions failed to mention is that deaths from illicit fentanyl and other synthetic opioids rose by 12 percent – more than making up for whatever gains were made in reducing deaths from heroin and painkillers. 

From October 2016 to October 2017, the CDC estimates that 68,400 Americans died from drug overdoses, a 12% increase from the previous 12-month period.

So overdoses have not “finally started to decline” as Sessions claims. And the Attorney General, who once urged chronic pain sufferers to take two aspirin and “tough it out,” continues to blame prescription opioids for much of the nation’s drug problems.

“This (Justice) Department is going after drug companies, doctors, and pharmacists and others that violate the law,” Sessions said. “Since January 2017, we have charged more than 150 doctors and another 150 other medical personnel for opioid-related crimes.  Sixteen of those doctors prescribed more than 20.3 million pills illegally.”

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The Drug Enforcement Administration, which Sessions oversees, is also seeking a rule change that could lead to further tightening of the nation’s supply of opioid medication -- in addition to the 45% in production cuts the DEA ordered over the last two years. The DEA wants to change the rules so it can arbitrarily punish drug makers who fail to prevent their opioid products from being diverted and abused.  

Sessions ‘Socially Irresponsible’

“I think they’re attacking it from the wrong end, to be candid with you,” says Tony Mack, the CEO and chairman of Virpax Pharmaceuticals. “Who is going to end up suffering is the real patients that have chronic pain and can’t get a hold of these opioids.”

Although Virpax is focused on developing non-opioid pain medication, Mack has a wealth of experience in opioid pharmaceuticals, having worked for Purdue Pharma, Endo and Novartis. In an unusually blunt interview for a drug company executive, Mack told PNN that Sessions’ focus on prescription opioids was “socially irresponsible.”

“I believe Attorney General Jeff Sessions needs to sit down and talk to some of these physicians who are pain specialists and understand that what he’s doing is going to put the chronic pain patient, the post-operative patient, and the patient that comes to the emergency room in serious jeopardy,” Mack said. “I think that Jeff Sessions is not educated well. I think he is picking on something that sounds good politically but doesn’t make sense socially. It’s socially irresponsible.”

Mack says pain patients would be caught in the middle if the DEA changes the opioid production rules and, for example, tells Purdue Pharma to stop selling OxyContin, its branded formulation of oxycodone.

“If you cut off that particular company, since they have more oxycodone out there than anyone, what will happen is patients will have to go to morphine or have to go to fentanyl,” Mack told PNN. “You’re not going to give patients the choices that they need to have in order to manage their pain. Not every single opioid works the same way for every single person. They all work differently."

Mack thinks the DEA’s earlier production cuts have contributed to nationwide shortages of IV opioid medications, which are used to treat hospital patients recovering from surgery and trauma.

“Absolutely, I do,” he said. “It’s just a domino effect to me. You’re going to send more patients home or you’re going to be postponing surgeries until they get opioids because they can’t do (surgeries) without it. It would be inhumane.”

Mack says efforts to limit opioid prescribing and production may have backfired, giving patients little choice but to turn to the black market for pain relief.

“I think they’re trying to throw the baby out with the bathwater here. They’re not thinking it through,” Mack said. “They’re probably going to increase the amount of (illegal) drugs out there. And patients aren’t going to try and get help, because they’re going to be on heroin. Not on a prescription medication. They’re going to be shooting up heroin.”

Lost in the debate over opioids and their role in the overdose crisis is this little known fact: A recent study by the Substance Abuse and Mental Health Services Administration (SAMHSA) found that psychotherapeutic drugs used to treat depression, anxiety and other mental disorders are now involved in more overdoses than any other class of medication. They include antidepressants, benzodiazepines, anti-psychotics, barbiturates and attention deficit hyperactive disorder (ADHD) drugs such as Adderall. Over 25,000 overdoses in 2016 involved psychotherapeutic drugs. That compares to 17,087 deaths linked to opioid pain medication.

The Difference Between Pain and Suffering 

By Ann Marie Gaudon, Columnist

It’s very easy to increase your pain and suffering. That’s not a typo. Believe me, we do it all the time. 

In my field, we use the term “clean pain” to describe something that we don’t have any choice over. Clean pain is the biological pain that science just can’t seem to fix. My clean pain is a result of disease. Your clean pain may be a result of disease or injury, or perhaps a combination. In the context of chronic pain, clean pain is unavoidable.

Clean pain is influenced by many factors and culture is one of them. For example, some African women deliver their babies in total silence due to learned beliefs. Clean pain can also be influenced by context, such as athletes who feel no pain as they push through their training and competition. Only when it is over do they feel pain and get care.

Clean pain is influenced by anticipation and previous experience. For example, you tell yourself that it’s happened this way in the past, so it’s absolutely going to happen this way again. We catastrophize (“It’s going to be awful and I won’t be able to cope!”) or we ruminate and obsess over our pain thoughts.

Grieving over the past or imagining a catastrophic future are two long highways to hell for chronic pain patients. I’ve driven on both of them. It’s not a fun ride.

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Clean pain is also influenced by emotional and cognitive factors such as fear, anxiety, anger, depression and distorted thinking (“I will die from this pain!”). 

Dirty Pain

Clean pain is unavoidable within the context of chronic pain. However, what psychotherapy sees as avoidable, and completely within our control, is a second layer of struggling that we add to our pain. This second layer is called “dirty pain.” 

This dirty pain accumulates when we focus our attention on the negative thoughts and feelings about the pain, as well as the stories we tell ourselves (“I cannot live my life until I am pain free!”), and the rules we make up about the pain (“I cannot exercise in any capacity at any time with this pain”).

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Some of these beliefs have a bit of truth to them, while some are arbitrary with no evidence to support them. Yet we can come to buy into them hook, line and sinker. Let the suffering begin.

Just to be clear, we absolutely must try to help ourselves with medical treatment in an attempt to alleviate our clean pain. However, there comes a time when the pain will budge no more. When we’ve reached that limit, yet continually strive to control pain that is not controllable, our efforts then become maladaptive and we suffer even more.

This metaphorical “chasing your tail” is also added to the layers of dirty pain.

We are all allotted only so much time and energy. We have a choice: Spend this time and energy trying to change the unchangeable, or engage in activities and relationships that help give you a sense of purpose and well-being.  

The goal of therapy is to help pain patients increase their repertoire of behaviours, guided by what they see as important, their own goals, and what they value in their life. This is in direct opposition to a restricted, limited and socially isolated life where pain is lord and master. By helping people to change the way they experience their thoughts, feelings and pain sensations, there is an opportunity to drop the struggle with your pain and to connect to what really matters to you.

Therapy for chronic pain management is a tool, and a good one at that, especially within a multi-disciplinary setting where you also have access to a team of other professionals. Some people with mild pain do very well using just one or two tools. However, if you are moving toward severe pain, you will need to have a larger toolkit.

My own toolkit -- in alphabetical order -- contains diet, exercise, ice packs, lifestyle modifications (e.g. strategic scheduling of work), medications, psychotherapy, rest, and a support system of family members, friends, and colleagues.

Some tools help with my clean pain while others help with my dirty pain. They all work together so that I can disconnect from struggling and connect to what matters to me. It isn’t an easy thing to do – especially at first -- but it is doable, as countless others are doing it as well.

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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.

Do Anti-Opioid Ads Hammer Home Wrong Message?

By Pat Anson, Editor

People who take opioid pain medication are often accused of bad behavior – such as stealing, selling and diverting their drugs. Or being lost in a haze of opioid addiction.

Now pain patients are being depicted as self-destructive maniacs so hopelessly hooked on opioids they'll do anything for their next high.

Four government-sponsored ads released this week by the White House feature young people who deliberately and violently injure themselves to get opioid medication.

All four ads are cringe worthy.

Kyle smashes his hand with a hammer.

Chris breaks his arm by slamming a door on it.

Joe breaks his back when he crawls underneath a car and lets it fall right on top of him.

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“They gave me Vicodin after my knee surgery," says Amy in the 4th ad. "They kept prescribing it, so I kept taking it.  I didn’t know it would be this addictive. I didn’t know how far I’d go to get more."

Amy then unbuckles her seat belt and drives her car into a garbage dumpster.

“Opioid addiction can happen after just five days. Know the truth, spread the truth,” an announcer solemnly warns.

The White House Office of National Drug Control Policy partnered with the Ad Council and the Truth Initiative to launch “The Truth About Opioids” campaign. The four 30-second ads are based on real life stories.

“After testing 150 different messages, we are all excited to launch four hyper-realistic ads that show true stories — not fictionalized and not embellished — true stories of four young adults who took extreme measures to get more prescription pills in order to feed their addiction,” said White House counselor Kellyanne Conway.

“The goal is for other young adults to see these ads and ask themselves how they can prevent their lives and others’ lives from going down a similar path.  We hope these ads will spark conversation to educate teens and young adults to talk to their doctors about alternatives to opioids.”

The White House was vague about when and where the ads will run, and dodged questions about how much the campaign will cost taxpayers. Most of the productions costs and airtime are being donated by Facebook, YouTube, Google, NBCUniversal and other media partners.

Like the CDC’s recent Rx Awareness Campaign, the four commercials focus exclusively on opioid prescriptions, while ignoring the rising death toll taken by illicit fentanyl and heroin. It is also rare for anyone to become addicted to opioid medication after a few days, as the ads suggest.

A recent report by the Substance Abuse and Mental Health Services Administration (SAMHSA) warned that fentanyl and other black market opioids are now involved in more fatal overdoses than opioid medication. Drugs used to treat depression and anxiety are also linked to more deaths than painkillers. SAMHSA said that “widespread public health messaging is needed” about the rapidly changing nature of the overdose crisis.

Why then the continued focus on pain medication?  

“The fact is that the greatest amounts of misuse are happening among 18- to 24-year-olds.  Almost 6 million young people a year get prescribed opioids.  They are initiated into this.  And we know that most long-term heroin addiction starts among young people through a first experience with opioids.  So that is what we’re focusing on here because there is great need,” said Robin Koval, CEO and President of Truth Initiative.

But a recent study of high school heroin users found that most abuse a wide variety of substances – not just painkillers. Alcohol was the most common drug abused, followed by marijuana, ecstasy, LSD and other psychedelics, cocaine, amphetamines and tranquilizers. 

“The Truth About Opioids” campaign makes no mention of those other drugs.

"It may be inadequate to focus on heroin and opioid use in isolation,” said lead author Joseph Palamar, PhD, a  professor of population health at NYU School of Medicine. "A deeper understanding of how heroin users also currently use other drugs can help us to discern better prevention measures."

A Pained Life: An Open Letter to President Trump

By Carol Levy, Columnist

Dear Mr. President Trump,

I have had trigeminal neuralgia, a chronic facial pain disorder, since 1976. For the last 30 years, I’ve been able to get all of the pain medications my doctors prescribed for me, including codeine, Demerol, morphine, Percodan, hydrocodone, and even an 8-ounce bottle of tincture of opium.

For the latter, I only had to go to 2 pharmacies. The first one didn’t carry it. The second store gave me the bottle with no questions asked.   I was trusted. My doctor was trusted. My doctor trusted me.

Many of us are now losing our doctors, who are fearful of being raided or arrested by the DEA because they prescribe opioids. Pain sufferers who were once able to get out of bed in the morning to work, watch their kids, and be a part of the world are joining the ranks of the disabled because opioids are being reduced or withdrawn completely.

Often patients get little or no warning when their pain management doctors decide they can no longer treat them.  Many doctors have closed their doors or decided not to prescribe opioids, no matter what the patient's condition or if they benefited from them. Often there is no rhyme or reason for this abandonment, other than fear of the DEA.

The Justice Department, CDC, VA and other federal agencies continue blaming patients and physicians for the opioid crisis, when the true “epidemic” involves illicit fentanyl and heroin. It has little to do with prescriptions.

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This blaming of patients and pain management physicians has caused untold additional suffering.  The worst part is the many anecdotal stories of patients committing suicide because the opioids that were helping them are no longer available in the same dosage, if at all.

The damage is not just physical from the increased pain, there is psychological pain as well.  Sources that once may have been a comfort become accusers.

Patients tell story after story: “My family now calls me an addict because I am on opioids.”

Or they fear letting their friends know they take opioids for pain: “Then they’ll think I am an abuser or an addict.”

Yes, some doctors overprescribe and some patients abuse their opioids.  But they’re a small number. We don't sell our prescriptions and we don't give them away like candy.  We take them because they help our pain.  Often, it is the only treatment or option left to us.  We would be fools to give away, sell or abuse that which is helping. 

It is time, past time, for the "compassionate conservatism" of the Republican party be put into use. And Democrats need to show that the compassion they talk about is real.

We have enough trouble dealing with our physical pain. Please stop making it worse by taking away our medications. Let our doctors doctor us, not the government.

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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.

CDC Report Ignores Suicides of Pain Patients

By Pat Anson, Editor

The suicide rate in the United States continues to climb, with nearly 45,000 people taking their own lives in 2016, according to a new Vital Signs report by the Centers for Disease Control and Prevention.

The suicide rate in the U.S. is so high it rivals the so-called “opioid epidemic.” The number of Americans who died by suicide (44,965) exceeds the overdose deaths linked to both illicit and prescription opioids (42,249).  The nationwide suicide rate has risen by over 30 percent since 1999.

“Unfortunately, our data shows that the problem is getting worse,” said CDC Deputy Director Anne Schuchat, MD. “These findings are disturbing. Suicide is a public health problem that can be prevented.”  

Contrary to popular belief, depression is not always a major factor in suicides. The report found that less than half of the Americans who died by suicide had a diagnosed mental health issue. Substance abuse, physical health problems, and financial, legal or relationship issues were often contributing factors. So was the availability of firearms, which were involved in nearly half of all suicides.

But while CDC researchers can go into great detail about the methods, causes, demographics, ethnicity and even the drugs used by suicide victims, they did not investigate anecdotal reports of a growing number of suicides among pain patients.

“Our report found that physical health problems were present in about a fifth of individuals as circumstances considered to lead up to suicide," Schuchat said in a conference call with reporters. "That doesn’t differentiate whether it was intractable pain versus other conditions that might have been factors.”

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Asked directly if lack of access to opioid medication may be contributing to pain patient suicides, Schuchat said that federal agencies were “working on comprehensive pain management strategies,” but they were not investigating patient suicides, such as the recent tragic death of a Montana woman.

“We don’t have other studies right now. But I would say that the management of pain is a very important issue for the CDC and Health and Human Services,” she said.

PNN asked a CDC spokesperson if the agency was conducting any studies or surveys to determine whether the CDC's 2016 opioid guideline was contributing to patient suicides, and what impact it was having on the quality of pain care. The boilerplate response we received essentially said no, and that the CDC was only tracking prescriptions. 

"Through its quality improvement collaborative and its work with academic partners, CDC is evaluating the impact of clinical decisions on patient health outcomes by examining data on overall opioid prescribing rates, as well as measures such as dose and days’ supply, since research shows that taking opioids for longer periods of time or in higher doses increases a person’s risk of addiction and overdose," Courtney Leland said in an email.

As PNN has reported, the CDC’s guideline may be contributing to a rising number of suicides in the pain community.  In a survey of over 3,100 pain patients on the one-year anniversary of the guideline, over 40 percent said they had considered suicide because their pain was poorly treated.

Most patients said they had been taken off opioids or had their doses reduced to comply with the  CDC guideline, which has been widely adopted throughout the U.S. healthcare system. Many patients say they can’t even find a doctor willing to treat them.

‘Making Plans to End This Life’

“I am scared to death as pain for me is unbearable. If I cannot get a prescription for relief I will probably be one of those (suicide) statistics because as far as I'm concerned, my quality life would be gone and no longer worth living. I will be sure to leave a note telling the CDC to go to hell too,” one PNN reader said.

“If my life is reduced to screams of agony in my bed while my father has to watch, if that happens and I can’t take anymore suffering, I will leave a note (probably a very long one), and in it I will say that the people who are making these guidelines into law, should be charged with my homicide,” another patient wrote.

“My suicidal ideation has increased exponentially. I have now resorted to cutting and punishing myself in order to distract from the physical chronic pain I suffer with,” said another patient. “I am struggling terribly and can’t even get sleep. I have been making plans to end this life and if the pain continues without treatment, it will not be hard to do.”

“My wife has been talking about suicide as the only option to escape her chronic pain and migraine headaches. I am starting to think the same thoughts,” wrote a man who also suffers from chronic pain. “Many chronic pain patients left without a doctor or opiate painkillers will commit suicide to escape the pain and suffering. My wife and I included.”

British Columbia Revising Its Guideline

The Canadian province of British Columbia was one of the first to adopt the CDC guideline as a standard of practice for physicians. In April 2016, British Columbia declared a public health emergency because overdose deaths from illicit fentanyl, heroin and prescription drugs were soaring. In response, the College of Physicians and Surgeons of British Columbia released new professional standards and guidelines that were closely modeled after the CDC’s.

Two years later, the British Columbia guidelines are now being revised because too many patients were being denied care or abandoned by doctors fearful of prescribing opioids.

“Physicians cannot exclude or dismiss patients from their practice because they have used or are currently using opioids. It’s really a violation of the human rights code and it’s certainly discrimination and that’s not acceptable or ethical practice,” college registrar Heidi Oetter told The Globe and Mail.

Under the old guidelines, British Columbia doctors were strongly encouraged to keep opioid doses below 90 milligrams of morphine a day – the same recommendation as the CDC’s. Now they’re being told to use their own discretion and to work with patients in finding an effective dose.

“Hopefully it’s clear to physicians that the college is really expecting that they exercise good professional discretion, that they are really engaging patients in informed consent discussions and that patients are really aware of the potential risks that are associated with opioids, particularly if they’re taking them in conjunction with alcohol or sedatives,” Oetter said.

Not only were the old guidelines harmful to patients, they were ineffective in reducing overdoses. British Columbia still has the highest number of overdoses in Canada, with 1,448 deaths last year.

Overdoses also continue to soar in the United States – mostly due to illicit fentanyl and other street drugs. Will the CDC change its guideline -- as promised -- because it is harming patients and failing to reduce overdoses?

"CDC will revisit this guideline as new evidence becomes available," the agency said in 2016. "CDC is committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted.”

Today’s report on suicides indicates the agency has no plans to do either.