How Neuroinflammation Causes Chronic Pain

Barby Ingle, Columnist

What is neuroinflammation and why does it cause severe burning pain even when there seems to be no injury?

Let me explain it as simply as I can. Say you sprain your ankle. Your ankle then hurts, swells, discolors, and the pain limits use. The swelling occurs because of “healing” chemicals that move into the affected area and work to repair any damage.

In a typical person, this process is successful and the healing chemicals trigger another set of chemicals to take the healing chemicals away. The swelling and discoloration go away and the person doesn’t have any additional issues healing from that trauma.

But sometimes the healing process doesn’t work correctly and the neuroinflammation becomes chronic, activating glial cells in our spine and brain. This poor healing process changes your spine and brain in ways that essentially leave your pain signals turned on.  

Glial cells are small nerve cell that fire off about every two minutes looking for any threats to the body. This is part of your fight or flight system. They are non-neuronal cells that maintain homeostasis, form myelin, and provide support and protection for the brain's neurons. Glia is a Greek word meaning glue.

In the human brain, there is roughly one glia for every neuron, with a ratio of about two neurons for every three glia in the cerebral gray matter, according to the research article, “Equal Numbers of Neuronal and Nonneuronal Cells Make the Human Brain an Isometrically Scaled-Up Primate Brain.”

UNIVERSITY OF MANCHESTER

The four main functions of glial cells are to surround neurons and hold them in place; supply nutrients and oxygen to neurons; insulate one neuron from another; and to destroy pathogens and remove dead neurons. They also modulate neurotransmission, according to the “D-amino acids in the brain: d-serine in neurotransmission and neurodegeneration" research paper. Therefore, glia is a lot more than just the “glue” of the nervous system.

Why should we pay attention to glia activated neuroinflammation? There needs to be much more research into this area and ways to control glial activation. What else activates glia? What deactivates it?

At a medical conference in 2008, I learned how neuroinflammation primes the nervous system in chronic pain patients. Let’s say that someone slaps you unexpectedly. Your body reacts with a fight or flight response. Then down the road a few months, maybe a year, someone slaps you again. Now your fight or flight response is on guard. Instead of firing every two minutes or so, the glial are on full time. This is a signal to your healing process that something is wrong. Your body wants to be ready to protect you in case you are slapped again.

The second “slap” can be any kind of any trauma: a torn ligament, broken bone or even a paper cut. It can be just as big or even smaller than the first slap. The first slap causes the priming, the second one confirms the risk (even if there is none), and now the body’s protection system is “on” just in case.

Looking at my case, I had a tear in two of my knee ligaments in 2001 and underwent surgery. I bounced back in a very short time and continued on with my athletic activities as a head Division IA collegiate cheerleading and dance coach.

About a year later, I was in a minor auto accident and had a brachia plexus injury which devastated my life. The harder I fought it, the worse I got physically. Was it priming? Was I exposed to something that set off the neuroinflammation process?

Fortunately, years later I was able to deactivate my glia and go into remission because of infusion therapy. That helped me to understand the importance of controlling glia activation and neuroinflammation.

I hope by sharing my story it starts more conversations to get medical practices to catch up to the science that already exists. Is deactivating the glia a cure? No, but it does go a long way in assisting with chronic pain management.

It got me from wheels to walking. And now that I am walking, I will keep talking until more lives are changed for the better. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) 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.

Marijuana Based Drug Effective in Treating Epilepsy

By Pat Anson, Editor

A British pharmaceutical company has released positive results from a Phase 3 clinical study of an experimental drug derived from marijuana.

GW Pharmaceuticals (NASDAQ: GWPH) reported that the drug – called Epidiolex – significantly reduced seizures in patients with Lennox-Gastaut syndrome, a rare form of childhood epilepsy. Epidiolex contains cannabidiol (CBD) a chemical compound found in marijuana that does not produce the “high” associated with cannabis plants.

“From a physician’s perspective, the positive outcome in this trial of Epidiolex in patients with Lennox-Gastaut syndrome is very exciting. Lennox-Gastaut syndrome begins in early childhood, is particularly difficult to treat, and the vast majority of patients do not obtain an adequate response from existing therapies,” said study investigator Linda Laux, MD, Director of the Comprehensive Epilepsy Center at Ann & Robert H. Lurie Children's Hospital of Chicago.

“I am excited about the prospect of Epidiolex being made available on prescription in the future and believe it has the potential to make an important difference to the lives of many patients.”

The placebo controlled study involved 171 patients with Lennox-Gastaut syndrome. Epidiolex reduced the number of seizures in a month by 44 percent, compared with those taking a placebo medication that reduced seizures by 22 percent.

In March, another Phase 3 trial of Epidiolex also showed positive results in children with Dravet syndrome, another form of childhood epilepsy. GW is also conducting a Phase 3 trial of Epidiolex in Tuberous Sclerosis Complex and expects to initiate a Phase 3 trial of Epidiolex in infantile spasms in the fourth quarter of this year.

If approved by the Food and Drug Administration, the drug would be the first cannabis derived drug to win approval for the treatment of childhood epilepsy. Epidiolex has both Orphan Drug Designation and Fast Track Designation from the FDA. GW plans to formally file for FDA approval later this year.

GW is already marketing a marijuana-based oral spray called Sativex that is being sold in Europe, Canada and Mexico to treat muscle tightness and contractions caused by multiple sclerosis. Canada also allows Sativex to be used for the treatment of neuropathic pain and advanced cancer pain.

Sativex is not currently approved for use in the U.S. for any condition. It is estimated that over 400,000 cancer patients in the U.S. suffer from pain that is not well controlled by opioid pain medications. However, two recent Phase 3 studies found that Sativex worked no better than a placebo in treating cancer pain.

Wearable Devices Could Monitor Opioid Use

By Pat Anson, Editor

We’ve written before about wearable medical devices, a fast growing $2.8 billion industry aimed at helping us lead healthier lives. Some devices relieve pain, while others monitor your blood pressure, pulse, body temperature, sleep, or even the number of calories you’re burning.

One device can even be used as a sort of “Big Brother” to monitor your use of opioid pain medication.

A small study published in the Journal of Medical Toxicology followed 30 emergency room patients who were given opioids for severe acute pain. For four months the patients wore a Q sensor, a wristband device made by Affectiva,  a Massachusetts company that specializes in technology that tracks and measures human emotions.

The wristband only monitors skin temperature and locomotion (movement) of the user, but researchers found the data can be used to track and predict opioid use with a fair degree of accuracy.

Researchers say people who take opioids daily for pain or addiction treatment (methadone and buprenorphine) are more likely to fidget or show restless activity when they feel cravings for medication. A sudden decrease in movement and an increase in skin temperature can be signs that they had taken a dose of medication.   

affectiva photo

"The patterns may be useful to detect episodes of opioid use in real time," says lead author Stephanie Carreiro, MD, a professor of Emergency Medicine at the University of Massachusetts Medical School. "The ability to identify instances of opioid use and opioid tolerance in real time could for instance be helpful to manage pain or during substance abuse treatment."

Carreiro and her colleagues say wearable devices could help identify pain patients at risk for substance abuse or addiction. They could also be used to remotely monitor patients enrolled in addiction treatment programs to detect whether they are relapsing.

“Wearable biosensors show a consistent physiologic pattern after opioid administration in an ED (emergency department) population,” they said. “This biometric response shows some distinguishing features between heavy and non-heavy opioid users in a controlled ED setting. This pattern may be useful to detect episodes of opioid use in real time. Further study is needed to evaluate the potential diagnostic and interventional applications of these devices in drug abuse treatment and pain management."

The Q sensor was initially developed to monitor children with epilepsy or autism, but they’ve since grown into a tool used in consumer focus groups to measure responses to advertising. They’re also being tested in middle schools as an “engagement pedometer” to measure if students are interested in a particular subject.

Critics say the technology is creepy and the data it generates can easily be misinterpreted.

"In high school biology I didn't learn a thing all year, but boy was I stimulated. The girl who sat next to me was gorgeous. Just gorgeous," Arthur Goldstein, an English teacher and critic of the technology told Reuters.

Affectiva recently raised $14 million in funding to develop facial recognition software for video games.  

A Pain Poem: Configurations of Mourning

“Configurations of Mourning”

By Angelika Byczkowski

I mourn

Passion confined,

Freedom now curtailed,

Crammed into an angry knot.

No regrets for having lived to excess.

Desire's wide and glorious arc,

Stunted and diminished,

Trapped inside

My pain.
 

I mourn Desire's wide and glorious arc,

Passion confined, Stunted and diminished,

Freedom now curtailed, Trapped inside

My pain. Crammed into an angry knot.

No regrets for having lived to excess.
 

I mourn My pain.

Passion confined, Trapped inside,

Freedom now curtailed, Stunted and diminished

Desire's wide and glorious arc, Crammed into an angry knot.

No regrets for having lived to excess.
 

My pain,

I mourn

Trapped inside

Passion confined,

Stunted and diminished,

Freedom now curtailed,

Desire's wide and glorious arc,

Crammed into an angry knot.

No regrets for having lived to excess.

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome (EDS) and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various 4-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and writing about chronic pain, EDS, and fibromyalgia at EDS Info. Angelika’s essays and poems have been published in The New York Times and several healthcare blogs.

Pain News Network invites other readers to share their stories (and poems) with us. Send them to:  editor@PainNewsNetwork.org. 

Doctors Warn of Crisis in Osteoporosis Treatment

By Pat Anson, Editor

Thirty years of progress in treating osteoporosis and reducing bone fractures in the elderly is rapidly being reversed, according to two bone health experts.

In an article called A Crisis in the Treatment of Osteoporosis, published in the Journal of Bone and Mineral Research, Sundeep Khosla, MD, and Elizabeth Shane, MD, say too many patients at high risk of fractures are not being diagnosed or treated for osteoporosis, even though hormones and bisphosphonate drugs are available to help strengthen their bones.

“The field of osteoporosis may be coming full circle, and that is not good for the millions of older women and men who will suffer painful and disabling spine and hip fractures - fractures that might have been prevented,” Khosla and Shane wrote.

“As physicians, we are now watching as the fundamental progress made to reduce fractures and dramatically improve the quality of life of our patients during the past 30 years unravels.”

More than 10 million Americans suffer from osteoporosis and 44 million have its precursor, a loss in bone density that raises the risk of fractures and disability.  Breaking a bone in your spine or hip may be so traumatic – especially for the elderly -- that it doubles your chances of developing chronic widespread body pain.

Bisphosphonates such as Fosamax have been found to be effective at slowing the loss of bone mass and reducing fractures, but concerns about their use rose when patients reported side effects such as joint and musculoskeletal pain. That made some patients reluctant to take bisphosphonates and doctors less likely to prescribe them.  

Khosla and Shane cite a recent study that found only 3 percent of patients with a hip fracture in 2013 were given bisphosphonates to strengthen their bones, down from 15% of patients in 2004.

“In short, we, as physicians who care deeply about the treatment of patients with osteoporosis, find ourselves in a dire situation. At a point in time when we have developed pharmacologic tools capable of preventing enormous suffering and needless mortality, we may well be coming back full circle: the downward spiral of vertebral fracture, hip fracture, immobility, loss of independence, and premature death that we thought we had conquered may soon become the accepted norm again,” they wrote. 

“There can be no more urgent call to action for our field than we face today. We must find ways to ensure that patients who need appropriate treatment for osteoporosis are not only prescribed effective medications, but are also equipped with the information they need to make an informed choice on taking these medications.”

Khosla is an endocrinologist, research scientist, professor of medicine and director of the Clinical and Translational Science Award Program at the Mayo Clinic in Rochester, Minnesota. Shane is an endocrinologist, research scientist, professor of medicine and vice chair for clinical and epidemiological research at Columbia University in New York.

A quarter-million Americans sustain a hip fracture each year, according to the National Osteoporosis Foundation, but less than a quarter are treated for osteoporosis afterwards.

A recent survey of 42 hip fracture patients found a startling level of misinformation and mismanagement surrounding osteoporosis. A majority (57%) said their doctors did not recommend osteoporosis medication and one in four said they would reject taking the drugs.

Nearly two-thirds (64%) of those who said they were being treated for osteoporosis were taking calcium and vitamin D supplements, which researchers say are "useless" at preventing osteoporotic fractures.

Another recent study found that elderly men are far less likely to be screened for osteoporosis or to take preventive measures against the bone-thinning disease than women. The risk of death after sustaining a hip fracture is twice as high in men compared to women.

AMA Defends Dropping Pain as Vital Sign

(Editor’s note: Last week we published a story on the American Medical Association’s decision to support the removal of pain as a “fifth vital sign” in professional medical standards – a move that some believe will make it harder for pain patients to be properly diagnosed and treated. Patrice Harris, MD, Chair of the AMA’s Board of Trustees, sent us the following letter objecting to how the AMA’s vital sign policy was characterized by PNN.)

By Patrice A. Harris, MD, Guest Columnist

The American Medical Association (AMA) unequivocally supports a patient’s right to receive the highest level of compassionate, comprehensive care for his or her pain.  It is unfortunate that the recent actions at the AMA House of Delegates were painted as anti-patient (“AMA Drops Pain as Vital Sign”), when the actual debate was focused entirely on how to ensure physicians have the necessary tools to deliver optimal care to our patients. 

Reducing the stigma of pain and advocating for comprehensive pain care are key recommendations from the AMA Task Force to Reduce Opioid Abuse – part of our multifactorial plan to ensure that balanced policies are in place to ensure patient’s access to care and promote the best evidence-based pain management practices, while reversing the nation’s opioid misuse, diversion, overdose and death epidemic.

When called for by a physician’s clinical judgment, this includes the use of opioid analgesics as a potential component of individual treatment plans.

Contrary to the claims in the article, however, our new policies complement and further our longstanding advocacy that emphasize the importance of treating each patient as an individual and tailoring care for that individual.

PATRICE HARRIS, MD

Pain satisfaction surveys, physician satisfaction surveys, even the Joint Commission’s Pain Care standards have not been shown to result in comprehensive improvements in pain treatment or protocols, or improved outcomes, but are clearly motivating forces for opioid prescribing. 

Patients with chronic pain deserve to benefit from the research and scientific approaches as envisioned by the National Pain Strategy, which the AMA strongly supports.  Not a single physician said, suggested, or hinted that anyone should “stop asking patients about their pain” as your recent article suggested.  Perpetrating this baseless, stigmatizing claim does your readers a tremendous disservice and does not reflect the opinions or practice of the nation’s physicians. 

We are well-aware that efforts to reduce the supply of opioids in the United States, without due consideration for unintended consequences and impact on chronic pain patients, have taken firm hold, and that many such patients have experienced disruption in their care and suffered. Many physicians at the AMA meeting decried the stigma that their patients experience. Others highlighted the audits and investigations by law enforcement among their colleagues.  And many noted the importance of treating all physical, psychosocial and behavioral aspects of pain. 

Furthermore, all discussed the importance of effective, evidence-based care, including the fact that vital signs are those that can be objectively measured and quantified. Identifying, treating and managing pain is central to medical practice, but it is not a readily quantifiable physiologic vital sign.  

We recognize that the pendulum has clearly swung too far. We know that the stigma of pain and opioid use has become pervasive, and we believe physicians and patient advocates must work together to restore balance.  But we can’t ignore the fear and stigma that pervades our society – and affects physicians and other health care professionals. We see (and experience) the increased scrutiny by law enforcement and government regulators.

In response, some physicians no longer treat chronic pain or prescribe opioids. But there are committed physicians in every city, town and state who provide the type of compassionate care that our patients need and deserve.  There are many examples of physicians doing all that is necessary to provide the type of complex, thoughtful care that chronic pain patients need. That is the vision we have for pain care in the United States.

We will, always stand up and speak out in support of patients who are in pain. We have done this countless times in Congress, with our state and specialty society colleagues, in front of the National Association of Counties, National Conference of Insurance Legislators, National Governors Association and many other leading organizations. 

We know all too well that pain is the number one reason patients come to us. We will continue to seek all avenues to provide the care our patients need – whether pharmacologic or non-pharmacologic – and insist that insurers cover the multimodal therapies required for effective management of chronic pain. 

The nation’s opioid misuse, overdose and death epidemic has harmed far too many, and the AMA is committed to working to ensure that patients with pain are not among those who must now become innocent bystanders in the regulatory response to this public health epidemic. To suggest anything less is to ignore the body of our advocacy and the mission that is central to our proud history.

Patrice A. Harris, MD, is Chair of the AMA Board of Trustees and Chair of the AMA’s Task Force to Reduce Opioid Abuse. A practicing psychiatrist based in Atlanta, Dr. Harris has served on the board of the American Psychiatric Association, as President of the Georgia Psychiatric Physicians Association and as Director of Health Services for Fulton County, GA.

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.

U.S. ‘Inundated’ with Fake Fentanyl Pills

By Pat Anson, Editor

With much of the U.S. focused on the so-called epidemic of prescription opioid abuse, another deadly problem is quietly taking root around the country: illicit fentanyl being sold as counterfeit pain medication.

“It’s unreal. They’re inundated with fentanyl in the Midwest and in the northeast,” says DEA spokesman Rusty Payne. “A lot of these fentanyl pills are being marketed as knockoff oxy (oxycodone).”

We first began reporting on the fake fentanyl pain pills in April, when 14 deaths in California and 9 in Florida were blamed on counterfeit medication.  Since then, the problem has spread to virtually every state.

In Massachusetts, Boston police are warning about counterfeit fentanyl pills that are nearly indistinguishable from prescription oxycodone.

“This dangerous drug is being sold to buyers who presume the pills, which are accurately formed and marked with the designation A/215, are Oxycodone 30 mg tablets. Anyone who ingests these Fentanyl pills may put themselves in serious danger of overdosing which can result in death,” police said.

In Layton, Utah, at least one recent overdose death is blamed on counterfeit roxicodone with the same markings.

LAYTON POLICE DEPT. PHOTO

“If you locate prescription pills with roxicodone markings "A" and "215" and you aren't sure where they originated from - use caution in handling them as you can absorb fentanyl through your skin,” the Layton police department warned in recent a Facebook post. “Counterfeit prescription pills are being made by street drug dealers and sold on the street, as they are cheaper and easier to obtain.”

In West Virginia, officials are investigating three non-fatal overdoses possibly caused by fentanyl disguised as Xanax, an anti-anxiety medication.

“You can tell it’s not really Xanax — if you look at the two they look the same, but not quite,” Dr. Elizabeth Scharman, director of the West Virginia Poison Center, told the Charleston Gazette-Mail. “The brand-name 2-milligram Xanax tablets are not that popular, so many people haven’t seen them before, and to them they look the same.”

And in Alabama, a routine traffic stop this week led to the arrest of a man with a vial of marijuana and a bag full of 78 white tablets. The pills looked similar to Xanax, but when tested were found to contain fentanyl.

Buyers Playing Russian Roulette

Fentanyl is a synthetic opioid that is 50 to 100 times more potent than morphine and can be lethal in very small doses. It is available legally by prescription in patches and lozenges to treat more severe types of acute and chronic pain, but illicitly manufactured fentanyl is fast becoming a scourge across the U.S. and Canada.

“It’s just Russian roulette,” says the DEA’s Payne. “Pharmaceutical grade fentanyl that you have in hospitals and such, that’s really not what we’re talking about here. We’re talking about black market, underground labs in China that are manufacturing this stuff.”

Unsuspecting buyers, including some pain patients who were unable to get opioid medication legally, have no idea the drug they’re getting from a dealer or friend could be lethal.  The dealers may be killing their own customers, but they’re driven by profit.

“We found that the profit margin in fentanyl is so much larger than heroin. And so have the Mexican cartels and the drug organizations,” said Payne. “A kilo of fentanyl versus a kilo of heroin on the street, when you cut it up and adulterate it enough to get it ready for street level distribution, they’re making a million to two million dollars from a kilo of fentanyl versus $80,000 for a kilo of heroin. So finances and profit are really playing a part in this. And you’ve got people here who are so addicted to opioids that there’s a market for it unfortunately.

In the past year, the DEA has issued two public safety alerts about fentanyl, but the Centers for Disease Control and Prevention (CDC) has remained relatively quiet about the problem – focusing instead on guidelines to reduce the prescribing of legal opioid medications.  So have many politicians, who have railed against opioid prescribing while supporting more federal funding for addiction treatment.

But the fentanyl problem is becoming too big to ignore.

States like Massachusetts, Rhode Island, Ohio and Delaware have reported an “alarming surge” in fentanyl related deaths in recent months. In some states, the number of deaths from fentanyl now exceeds those from prescription opioids.

“We think fentanyl and fentanyl overdoses have been underreported over the years in a lot of places. But we think people are now starting to pay more attention to it,” says Payne.

What no one seems willing to admit is that – while fentanyl dealers may be killing their customers – restricting access to legal opioids may only be creating new ones. In Canada’s western province of British Columbia, where fentanyl is involved in over half the drug overdoses, regulators have adopted opioid prescribing guidelines that are even more stringent than the CDC’s.

“The guidelines will make it much harder for pain sufferers, but will do absolutely nothing to discourage abuse and addiction. That population just goes on to something else as we all know from history,” said Barry Ulmer, Executive Director of the Chronic Pain Association of Canada.

The guidelines are forcing pain sufferers like Hugh Lamkin to buy fentanyl off the street because doctors won't give him an opioid prescription for arthritis and chronic back pain.

"I don't want to be buying street drugs," Lampkin told CBC News. “I think that I have a legitimate medical condition where I should be getting medication from my doctor."

Heroin Use Reaches 20-year High in U.S.

Limits on opioid prescribing may also be fueling a surge in heroin use in the United States, according to the chief researcher for a United Nations report on worldwide drug use.

"There is really a huge epidemic (of) heroin in the U.S.," Angela Me told Reuters.

According to the U.N. World Drug Report 2016, the number of heroin users in the U.S. reached one million in 2014, the highest in 20 years. Heroin use has increased sharply over the last two years in both North America and Europe.

The increase has coincided with a drop in heroin prices, but Me believes it could also be connected to the development of abuse deterrent formulas for OxyContin and other opioid pain medications, which have made the pills harder to crush and snort.

"This has caused a partial shift from the misuse of these prescription opioids to heroin," Me said.

Pain Protestors: 5 Simple Ways to Stand Up

By Pat Akerberg, Columnist

It frustrates me that there’s such a huge gap between what I’d like to do and what I can actually do to protest how pain care has gone amok. 

The truth is I can’t talk without triggering unmerciful pain.  I can’t make lots of phone calls or present to audiences or groups anymore.  I can’t march, run or walk for any distance now.  Thanks to debilitating chronic pain, I can’t reliably commit my energies to much more than the daily challenges I face. 

Maybe you’re in the same place too? 

As discouraged underdogs, we want to change the lopsided fervor that’s trumping our critical need for safe and humane advancements in pain care.

I wish we could lead the charge, but in reality our compromised bodies often can’t keep up with what that requires. Starting from scratch is tempting, but that’s at cross-purposes with our limited capacities.    

Then I remember “the butterfly effect,” born out of physics and chaos theory.  It refers to a cumulatively large effect that a very small force may produce in a larger system over a period of time.  It postulates how the fluttering of a butterfly's wings in one part of the world may set off currents that will grow into a hurricane in another part of it.

We can’t predict or know when there will be enough pressure, conspiring events or cumulative conditions to bring about the butterfly effect for us.  But progress requires active involvement.

We have strength in numbers, but some patient advocates have called out pain sufferers, questioning where our support and voices of protest have been thus far.  That’s a fairly untapped opportunity.

If we want pain reform, it will take a critical mass of us calling for it.  Pragmatically, we can help build momentum and heighten the pressure for change quicker by supporting and working with current pain advocacy groups.

We have literally dozens of advocacy organizations, but ironically they lack organization.  Each represents a piece of the broader issue -- yet their efforts haven’t coalesced enough around a single goal or goals to gain substantial traction.

If you’re wondering what part you can play or where to put your limited energies, let’s look at some current opportunities.

Step #1

The oldest patient advocacy group, the American Chronic Pain Association, had a seat on a CDC advisory committee when the opioid prescribing guidelines were created.  But somehow that opportunity for active influence was reduced to a complicit check the box activity.

What can we do to call for better representation from such pain advocacy groups?  The well articulated comments that we write among ourselves could be leveraged to that end.  Copy, paste and send them to all national pain advocacy groups, starting with ACPA. Many of these organizations and their e-mail addresses are available by clicking here.  

Get involved.  Raise your concerns.  Urge all of their leaders to rally behind one unifying message for impact.  Ask them to recruit a spokesperson to give pain a face/voice (celebrity, athlete, or public/professional figure), devise ramped-up media and funding strategies, and enlist savvy lobbyists and lawyers.

If each of us would send out 5 letters, e-mails, or make 5 phone calls a week to a different advocacy group each week, we’d reach them all in just 8 weeks. 

Step #2

Have you heard of the LifeBOAT Act? Its legislation that would tax opioid pain medications, introduced by Sen. Joe Manchin (D) of West Virginia, and co-sponsored by Democratic Senators Amy Klobuchar of Minnesota, Jeanne Shaheen of New Hampshire, Heidi Heitkamp of North Dakota, and Tammy Baldwin of Wisconsin, along with one independent, Angus King of Maine.

The legislation is a reverse Robin Hood version of robbery.  Lacking conscience, the LifeBOAT Act would take money from pain patients by punishing them for their medical misfortune.  In turn, an estimated $2 billion of our tax dollars would be given to favored addiction treatment centers to treat opioid addicts.

If you feel strongly about the injustice of this tax, email or call the senators’ offices with your reasoned, opposing comments:

• www.http://Manchin.senate.gov       (202) 224-3954
• www.http://Klobuchar.senate.gov    (202) 224-3244
• www.http://Shaheen.senate.gov      (202) 224-2841
• www.http://Heitkamp.senate.gov     (202) 224-2043
• www.http://Baldwin.senate.gov        (202) 224-5653
• www.http://King.senate.gov              (202) 224-5344

Step #3

The American Medical Association (AMA) recently decided to pass the hot potato by voting in favor of efforts to remove pain as a vital sign in professional medical standards, as well as disconnecting patient satisfaction scores from questions involving pain care in hospitals.

If this setback for pain sufferers pushes your buttons, you can call the AMA at (800) 621-8335 and let them know how you fell.

Step #4

September is National Pain Month, a good time to contact your local media and get them to cover our side of the pain story.  Press kits are readily available from some advocacy groups for this purpose.

Step #5

Our small efforts can quicken the overall cumulative effect, while giving us a personal and purposeful outlet.  A few more examples include:

• Join advocacy and social media groups (like Facebook) to understand their missions and volunteer for their initiatives
• Urge advocacy groups to get more media coverage of our side of the pain/opioid story
• Endorsing petitions sent out on our behalf
• Spreading the word and soliciting the help of family and friends

The Scottish writer W. H. Murray wrote this about the power of commitment: 

“Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation) there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. All sorts of things occur to help one that would never otherwise have occurred.”

By making a personal commitment on some level, each of us can contribute in ways that our physical limitations will allow. 

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

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.

DEA: Decision Not Made on Marijuana Legalization

By Pat Anson, Editor

The U.S. Drug Enforcement Administration is considering, but has not yet made a final decision on whether to reclassify marijuana as a Schedule II controlled substance, a move that would essentially make medical marijuana legal in all 50 states.

Last week two media outlets, the Santa Monica Observer and the Denver Post published reports speculating that marijuana could be rescheduled sometime this summer. The Observer even set a date for the announcement – August 1st – and cited an unnamed “Los Angeles based DEA Attorney” as the source of the information.

"Whatever the law may be in California, Arizona or Utah or any other State, because of Federal preemption this will have the effect of making THC products legal with a prescription, in all 50 states," the Observer quoted the DEA lawyer as saying.

The two stories fueled rampant speculation in blogs and on social media that a rescheduling of marijuana was imminent. Snopes.com even published its own take on the rumors, calling them “unproven.”

“There is as yet no indication that the information published on the topic was accurate, and there has been no official confirmation the DEA would moving in that direction on 1 August 2016,” Snopes said.

“We don’t have anything official to report,” DEA spokesman Rusty Payne confirmed to Pain News Network.

Like many rumors, there is some truth in the details. In a letter sent several months ago to Sen. Elizabeth Warren and seven other U.S. senators, a DEA official said the agency was finally getting around to making a decision on a five year old petition to reschedule marijuana.

“And in that letter we said we hoped to have a decision around July first. That’s certainly not a deadline, that’s just neighborhood ballpark, around that time. So people are getting antsy as the time is getting nearer,” said Payne, adding that DEA would not be making the decision alone.

“The agency that determines whether or not something is a medicine is the FDA, not the DEA. That’s why we have to rely on their portion of an in-depth study to determine whether or not something should be rescheduled or essentially determined to be a medicine. And if the FDA rules something is not a medicine, we’re bound by that. We cannot move it ourselves. We can’t overrule or override FDA on that,” said Payne.

The DEA has already received a recommendation from the FDA on whether to reschedule marijuana, but has not disclosed it. In the past, both agencies have resisted any attempt to legalize marijuana at the federal level, even as dozens of states moved to legalize medical marijuana.

In 2011, the DEA rejected a similar petition, saying “the known risks of marijuana use have not been shown to be outweighed by specific benefits in well-controlled clinical trials that scientifically evaluate safety and efficacy.”

Marijuana is currently classified as Schedule I drug – along with heroin and LSD – because it is considered to have no medical benefit and has a high potential for abuse. Moving it into the Schedule II classification, along with opioids such as hydrocodone and oxycodone, could potentially make marijuana available by prescription in all 50 states.    

Such a decision would upend the $40 billion medical marijuana industry, which is mostly composed of small companies and dispensaries that have created a niche for themselves while dealing with a cornucopia of state laws and municipal regulations. Rescheduling would open the door for pharmaceutical companies and pharmacies to get into the marijuana business.

"Schedule II would be a nightmare for the cannabis industry," Andrew Ittleman, a lawyer for a Miami law firm that advises marijuana companies, said in Inc.

Chronic Pain a ‘Silent Epidemic’ in UK

By Pat Anson, Editor

Nearly half of adults in the UK – nearly 28 million people – suffer from chronic pain, according to a new study in the British Medical Journal  that estimates about one in seven Britons have pain so severe it is disabling.

“Pain is really under-represented in terms of the public awareness of it,” lead author Alan Fayaz of Imperial College London said in The Guardian. “Nobody ever talks about chronic pain, it is like a silent epidemic.”

Fayaz and his colleagues conducted a meta-analysis of 19 studies involving nearly 140,000 people in the UK. Data from the studies was combined to arrive at the estimate that 43% of adults suffer from chronic pain – defined as pain that lasts for three months or more.

That estimate is over three times higher than a previous telephone survey study that found 7.8 million Britons have moderate to severe chronic pain.

About 8% of UK adults experience chronic neuropathic pain and 5.5% have fibromyalgia. Women are more likely to experience chronic pain than men.

Chronic pain was found to be a common experience among all age groups, including young adults, but increases steadily with age. Nearly two-thirds of adults over age 75 have chronic pain, according to one of the studies reviewed.

 “Bearing in mind that we are, in general an ageing population, that’s of concern because what you would then expect would be if you repeated this study in about 10 years time, the prevalence of chronic pain would be higher,” said Fayaz.

 “What I would really like is for us to have better tools in order for us to identify those people who are most severely affected and how we can help them, what their care needs are.”

The prevalence of chronic pain in the UK is similar to that in the United States, where the Institute of Medicine estimated that 40% of American adults – about 100 million people – have chronic pain.

Pain Care Shouldn’t Be Political Theater

By Richard Oberg, MD, Guest Columnist

The current hysteria over opioid pain medication is, without a doubt, the most unbelievable and difficult situation for patients I've ever seen in my 30 years of practice. With an increasing number of deaths due to overdose, the message has become that opioid medication is the problem. 

Healthy people, including healthy physicians, don't seem to believe chronic pain really exists to the degree that it does. Add in media hysteria with gross misrepresentation of the facts, often-cited CDC propaganda, and you have a recipe for disaster: addiction models applied to chronic pain patients.

Everyone's favorite defense mechanism – projection -- is overused constantly and many healthy people really think if they had chronic pain they'd somehow handle it differently or “beat it” which is nonsense.

Empathy is not a learned skill, nor is it widely prevalent in the population, including the majority of physicians. You feel it every time you see that look of disbelief from anyone, including physicians, regarding your chronic painful illness. Skepticism overrides compassion.  This attitude in the current climate has led to a crisis for patients.

At age 39, before I was diagnosed with psoriatic arthritis and eventually late stage complications of spondylitis and neuropathy, I was a multi-mile runner and very active member of our large hospital staff. Then suddenly every step was like walking on broken glass, aching everywhere with flu-like symptoms, and getting maybe two hours of sleep per night.

I saw multiple colleagues who'd give me a pat on the back and tell me to “hang in there” as I was heading for a meltdown.  Instead of a rheumatologist, I was sent to a psychiatrist.  Even after I got a definitive diagnosis, everyone still just chose to ignore it.

Sound familiar?

RICHARD OBERG, MD

I finally found an “old school” internist, one of the few in our area willing to treat chronic pain, who convinced me to try opioid medication cautiously, despite my reservations.  Like many people, I thought they'd make me fuzzy headed (bad for a diagnostic pathologist spending 8 hours under a microscope), but the opposite happened. Suddenly I was back at a tolerable pain level and able to sleep at night again. I’ll never forget how compassionate he was.

Biologic drugs such as Enbrel, which were new then, helped a lot for maybe 12 years. Over time they can become less effective for many patients. I became severely allergic to Remicade (anaphylactic reaction) and all other biologic/systemic medications also ceased to do anything, including Rituxan, which is for rheumatoid arthritis and B-cell lymphoma. I was desperate to continue working and was only able to with opioid medication.

Opioid Propaganda

So here's our dilemma as pain patients: we have a major federal agency (CDC) peddling “addictionologist” propaganda on a massive scale and investigative journalism no longer exists. The news media is no longer the fourth branch of government, but merely a vehicle for their propaganda.

Our physicians, despite being the highest paid in the world in the most expensive healthcare system in the world, have signed onto this -- not wanting any scrutiny whatsoever from state or federal regulators. They won't script in these “militarized” situations, and are either risk averse or co-dependent (the latter is why they want to drop the pain scale). Most are going along with the CDC because they don't want the extra trouble and have abandoned patient responsibility entirely, going for the low hanging fruit of more routine healthcare issues instead.

We have a supply and demand situation working against us with too few providers, an abundance of chronic pain patients, and pills that aren't as profitable as procedures. This varies from state to state and even within states, but is rapidly spreading. Physicians obviously caused part of the problem by over-prescribing, but they have the money and power, and are now just walking away from it all. There is a deafening silence from physicians, even when they know their patients are being abused.

In many states, like Tennessee where I live, physicians run everything. State officials passed tort reform, so lawyers won't take medical cases anymore (we tried and know firsthand).  Physicians own our state malpractice insurer, State Volunteer Mutual, which brags every year about malpractice premium refunds due to a decreased numbers of lawsuits. It's not because our state has a phenomenal group of physicians, it's just that the bar for a lawsuit is so high (like death of someone young) there are very few of them.

Within relatively few years (partly due to addictionologists like Dr. Andrew Kolodny having an outsized voice at the CDC) the conversation went from the “epidemic” of overdose deaths (which it never really was) to “opioids don't work for chronic pain” -- despite the fact that there are no good studies to support that because they really haven't been done.

They just say it and the news media repeats it, much like Dr. Sanjay Gupta, who stated on CNN’s “Prescription Addiction: Made in the USA” that overdoses were the #1 cause of preventable deaths in the Unites States. 

Sorry Sanjay, not even close. The CDC’s own statistics state that smoking and alcohol are the leading causes, with about 480,000 people dying every year – 25 times higher than the alleged 19,000 dying from prescription opioid medications.

How does this blatant propaganda get on CNN and what makes Sanjay Gupta an expert?

The ridiculous Consumer Reports cover story, The Dangers of Painkillers, also misused information supplied by the CDC. I've had a running email conversation with someone there for over a year asking why the bogus misuse of data - and got no answers of course.

Perhaps one of the most abominable statistical misuses by the CDC is confirmation bias, where they cherry pick data to “confirm” what they want to peddle, while ignoring other data, like the vast majority of pain patients doing well with opioid medication and most not having addiction issues.

Their argument simply doesn't work. In the 1990’s, the first decade of “massive” opioid prescribing that media outlets love to cite, there was no similar increase in complications caused by the number of “highly addictive” pills being prescribed. Then we had the 2008 financial meltdown, society changed, drug addiction became a prominent issue, and suddenly people were dying from too many pills.

Finally, the artificial breakdown of “cancer” pain vs. “non-cancer” pain is complete nonsense and always has been. The final common denominator of pain is pain, and cancer is merely one of many etiologies that can cause it.

Incidentally, the word “cancer” is pretty meaningless, especially to a pathologist like me. Large numbers of physicians and virtually all lay people have little understanding of the pathophysiologic processes pathologists are trained to understand.  Most things called “cancer” aren’t chronically painful and many autoimmune diseases can be much more painful than cancer.

Ironically, as cancer treatments have become better (such as those for breast cancer) and with longer survival times, many cancer patients are developing chronic pain conditions that have nothing to do with their cancer.

Do they get special treatment even if they have a good long-term prognosis?

Richard Oberg, MD, is disabled by psoriatic arthritis and no longer practices medicine. Dr. Oberg receives no funding from pharmaceutical manufacturers. 

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.

Benefits of 'Sunshine Vitamin' Not So Clear

By Pat Anson, Editor

Maybe Vitamin D isn’t all it’s cracked up to be.

We’ve reported on several studies showing that low levels of Vitamin D are linked to a variety of chronic pain conditions, as well as anecdotal reports that taking Vitamin D supplements can relieve pain and make you feel better.

But a Canadian researcher says there is very little evidence that the “sunshine vitamin” does any of that.

"Wouldn't it be great if there was a single thing that you or I could do to be healthy that was as simple as taking a vitamin, which seems benign, every day? There is an appeal to it. There is a simplicity to it. But for the average person, they don't need it," says Michael Allan, a professor of Family Medicine and director of Evidence Based Medicine at the University of Alberta's Faculty of Medicine & Dentistry.

Allan is the lead author of a review published in the Journal of General Internal Medicine that examines the evidence for 10 common beliefs about vitamin D. Those beliefs include the ability of vitamin D to prevent rheumatoid arthritis, treat multiple sclerosis, reduce falls and fractures, and improve depression.

The review found little evidence that Vitamin D supplements have much effect at all.

"Even areas that we really thought there was good evidence for benefit early on, don't seem to be bearing out," says Allan. "It makes it really difficult to determine a lot of time if there is anything substantial there that you could tell a patient, 'You can take this and it can help you this much.' There's really not nearly enough there to say that."

Allan and his colleagues did find evidence that Vitamin D can have an impact in reducing the number of falls and fractures among the elderly. But the effect is minor.

"Many people would say taking a drug for 10 years to stop one in every 50 fractures is probably not enough to be meaningful. And that's the best vitamin D gets as far as we know now," he said.

There have been over 1,600 studies conducted on Vitamin D in the last decade alone, but Allan says much of the research was poorly executed and is of low quality. He doesn’t dispute the overall health benefits of Vitamin D – such as building strong bones and teeth -- but thinks taking supplements is unnecessary and could even be harmful in large doses.

Most people get all the Vitamin D they need by being exposed to ultraviolet rays in sunlight. You can also get it by eating foods rich in Vitamin D, such as oily fish and eggs.

“Evidence does not support vitamin D supplementation for the treatment of multiple sclerosis and rheumatoid arthritis or for improving depression/mental well-being. Regular testing of 25-hydroxyvitamin D is generally not required, and mega-doses appear to increase harms,” Allan said. “Much of the evidence is at high risk of bias, with multiple flaws, including analyses of secondary endpoints, small and underpowered studies, inconsistent results and numerous other issues. Therefore, enthusiasm for a vitamin D panacea should be tempered.”

Despite the lack of evidence, belief in the benefits of vitamin D supplements remains strong. Allan believes much of it stems from misplaced trust in studies that show low vitamin D blood levels are linked with poor health. However, association does not prove causation.

"The 40 year old person is highly unlikely to benefit from vitamin D," says Allan. "And when I say highly unlikely, I mean it's not measurable in present science."

Tips on Living with POTS

By Ellen Lenox Smith, Columnist

I suddenly had my life come to a halt when “POTS” hit me in my sixties. Some of you may not be familiar with what that is.

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that affects the nervous system, causing light-headedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and sometimes even death.

According to Dysautonomia International,  between as many as three million Americans have some form of dysautonomia, and over 70 million around the world.

I had always lived with low blood pressure, but as the instability of my neck, due to Ehlers-Danlos syndrome progressed, I suddenly felt that standing or even just sitting up in bed might cause me to faint.

I reported the symptoms to my cardiologist, who worked with me on finding treatments, but that journey was not a simple one.

The first thing he encouraged me to do was to salt my food, to keep my blood pressure elevated. When that was not enough, he prescribed salt tablets.

Suddenly, I started gaining weight. There was no evidence of swelling in the extremities, the weight retention for me landed in my chest. However, I continued to faint and feel horrible.  

I reported back to the doctor and was encouraged to add more salt. I got scared when I gained another nine pounds and decided to stop taking salt, assuming that was the culprit. Soon after, I passed out, was sent to the hospital, and diagnosed with congestive heart failure.

I came home after three days in the hospital and proceeded to melt out of my husband’s arms, hearing both legs snap as I fell to the ground. I woke up with terrible leg pain and now had to face two micro-fractures from the fall.  

When my cardiologist was contacted, he mentioned a medication that he thought he had prescribed for me, but I was certain he not ordered anything besides the salt. I admired his honesty in when he later admitted his mistake. He had confused me with another patient. Once I started the medication he intended for me to take, life started to return to me.

I wanted to share my story in hopes that a reader with POTS might find these tips helpful. It’s such a debilitating condition that I hate to think of anyone else suffering unnecessarily.

Here is what has helped to get my life back and blood pressure to almost normal:

1)  Sleep elevated at a 30 degree angle. You want to elevate the head of your bed under the frame, not just sleep with pillows to elevate. If you need to travel, you can take plastic containers often used by college students to elevate their beds to create storage. I use two containers on each side of the head.

2)  Keep hydrated. Drink plenty of water daily.

3)  Exercise to keep your circulation strong.

4)  My magic medication turned out to be Midodrine HCL, 5 MG tablets. Once I started taking them three times a day, I started to live with normal blood pressure! This specific medication may not be suitable for you, but there are other medications that may help. You should consult with a doctor before trying any of them.

I hope this might provide you with useful strategies to cope with POTS.  Don’t settle with being stuck in bed. Although finding the correct combination of medication takes time, I hope that it will bring some normalcy to your life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their 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.

New Molecules May Combat Immune System Disease

By Pat Anson, Editor

A team of international researchers may have unlocked an ancient secret in the human immune system that could lead to new treatments for rheumatoid arthritis, multiple sclerosis and inflammatory bowel disease (IBD).

"Innate immunity is so old it goes all the way down to frogs, fish and even insects," says Professor Matt Cooper of the University of Queensland’s Institute of Molecular Bioscience.

Cooper and colleagues at Kings College London and the U. S. National Institutes of Health say the human immune system is basically comprised of two parts: the adaptive immune system, which produces antibodies against infection, and a very ancient pathway, known as the innate immune system.

"It stops us getting infections, but it also drives a lot of inflammatory diseases,” explains Cooper.  "So, in one case it's keeping us alive by stopping the bugs getting us, but if it goes wrong, we start to get diseases like arthritis, multiple sclerosis and IBDs such as colitis.

"Researchers always thought key components of these pathways acted alone, but our teams have discovered they can communicate and work together."

IBD is a chronic and painful inflammation of the gastrointestinal tract. Inflammation affects the entire digestive tract in Crohn’s disease, but only the large intestine in ulcerative colitis.

The study findings, published in the journal Science, may have significant implications for treating millions of people who suffer from inflammatory diseases.

"Inflammation in diseases such as colitis occurs when the immune system is activated inappropriately, and causes symptoms including pain, diarrhea, fever and weight loss," said Cooper. "Current treatments are not always effective, possibly because they are only blocking one of the key pathways and inflammation still occurs through the other pathway."

Researchers have developed two small molecules that each block one pathway.

activated immune cells

"We have tested these molecules and the results show that they both reduce inflammation when administered separately," Cooper said. "This work is still in the early stages but we are hopeful our ongoing research will lead to more effective treatments for the millions of IBD sufferers.

"It may give other scientists opportunities to develop new drugs against these diseases."

A healthy immune system is activated when the body recognizes invading microbes and alerts immune cells, such as T cells. Disease begins when the immune response spirals out of control and begins attacking healthy tissue.  

Researchers at New York University’s Langone Medical Center are also working on a theory known as the "hygiene hypothesis" that may explain why there is an increase in inflammatory bowel disease worldwide. They believe intestinal parasites and bacteria that humans were long exposed to are beneficial and help balance the immune system.

Sanitary practices have sharply reduced these parasitic and bacterial infections in developed nations, which now have some of the highest rates of Crohn’s and colitis. Researchers believe the immune response to infections triggers the growth of Clostridia, a bacterium known to counter inflammation.

AMA Drops Pain as Vital Sign

By Pat Anson, Editor

The nation’s largest medical society is recommending that pain be removed as a “fifth vital sign” in professional medical standards – a move critics say will make it even more difficult for pain sufferers to have their pain properly diagnosed and treated.

Delegates at the annual meeting of the American Medical Association in Chicago also passed several other resolutions aimed at reducing opioid prescribing and increasing access to addiction treatment. The AMA represents over 200,000 physicians in the U.S. and is very influential in setting public health policy.

The AMA’s new president said physicians played a key role in starting the so-called opioid epidemic by overprescribing pain medication, and now must do their part to end it.

“We have taken ownership of that, and physicians have taken ownership of being part of the solution,” AMA president Andrew Gurman, MD, told Modern Healthcare.

The AMA’s main “solution” to the opioid problem is to stop asking patients about their pain.

Pain was first recognized as the fifth vital sign in the 1990's, giving pain equal status with blood pressure, heart rate, respiratory rate and temperature as vital signs. The policy encourages healthcare providers to ask patients about their pain.

But critics say pain is not a vital sign, but more of a symptom, and cannot be measured like a patient's temperature or blood pressure. They also claim The Joint Commission,  a non-profit that accredits hospitals and other U.S. healthcare organizations, sets pain management standards too high, which contributes to opioid overprescribing.

"Just as we now know (the) earth is not flat, we know that pain is not a vital sign. Let's remove that from the lexicon," James Milam, MD, an AMA delegate said in MedPage Today. "Whatever it's going to take to no longer include pain as a vital sign ... Let's just get rid of the whole concept and try to move on."

“I am astounded that physicians don't believe we should assess pain on a regular and ongoing basis. That is exactly what removing pain as a vital sign means,” said Lynn Webster, MD, past president of the American Academy of Pain Medicine and vice president of scientific affairs at PRA Health Sciences.

Webster says dropping pain as a vital sign would setback pain care three decades.

“The problem is that too many physicians and policymakers equate assessing pain with giving opioids,” he said in an email to Pain News Network. “It appears that advocates for removing pain as a 5th vital sign are suggesting that if we just ignore pain then we won't have to deal with pain and opioid abuse will disappear. That is not only fantastical thinking, it is harmful to millions of people in pain.” 

"This is a very unfortunate decision, one that creates the very real possibility that we will see a decrement in the quality of pain care delivered in various institutions," warned Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management.

"The Joint Commission standards say you need to assess pain in every patient; record the results of that assessment; provide some kind of treatment; re-assess to see if the treatment was effective; and teach staff how to manage pain. They do not say we should ask patients how much pain they have on a 0-10 scale and give them opioids until the pain level is 4 or less. Not asking about pain does not make pain go away, and it does not relieve healthcare providers of their moral and ethical obligation to treat that pain effectively."

AMA Adopts PROP Policies

AMA delegates also passed a resolution urging The Joint Commission to stop requiring hospitals to ask patients about the quality of their pain care. Medicare has a funding formula that requires hospitals to prove they provide good care through patient satisfaction surveys.  The formula rewards hospitals that are rated highly by patients, while penalizing those that are not. 

"Judging health care facilities on an overly subjective measure – that is, how well it is perceived that they treat pain -- is an overly simplistic approach to measuring clinical effectiveness," said AMA Board chair Patrice Harris, MD, in a statement.

Passing the two resolutions means the AMA has essentially adopted the same policies as Physicians for Responsible Opioid Prescribing (PROP), which is also lobbying the Joint Commission to weaken its pain management standards.  PROP is funded by Phoenix House, which runs a chain of addiction treatment centers. 

“At a time when millions of individuals in pain are under siege, the AMA has made it clear they are no friend to people in pain as they are opposed to being accountable for the pain care they provide, “ said David Becker, a patient advocate and social worker. “The AMA has become regressive, vision less, and hard-hearted toward the suffering that millions of people in pain endure on a daily basis. It is clear that the AMA is in need of moral reform.”

A recent survey of over 1,200 patients by Pain News Network and the International Pain Foundation found that many were dissatisfied with their pain treatment in hospitals. Over half rated the quality of their pain care as either poor or very poor, and over 80% said hospital staff are not adequately trained in pain management.

The AMA House of Delegates also passed a resolution calling for greater access to naloxone, which reverses the effects of an opioid overdose, and adopted a policy urging health insurers to increase coverage of non-opioid and non-pharmacological pain treatments.

“Insurers must cover non-opioid and non-pharmacologic therapies that have proved effective. Insurers must take a broader view to give patients and physicians more choices," said Harris. “These policies will save lives. That's the bottom line.”