The Real Hoax About Prescription Opioids

By Barby Ingle, PNN Columnist

How many have to die? How many have to be denied? How many have to suffer unnecessarily?

Those are some of the questions I’m asking after reading a recent article in The Guardian about the CDC’s revised opioid guideline. The article has a few misstatements about prescription opioids that I have issues with. 

Before I share my take, I want readers to know that I do not take opioid medications myself. I have taken them in the past, but found other treatments that were more effective, so I stopped taking opioids in 2009. I also have an allergy to OxyContin, which I discovered after a knee surgery.

In 2018, I underwent pharmacogenomic testing, which I highly recommend for anyone who has chronic physical conditions. It has given me the best precision care available. I still live with multiple chronic pain and rare diseases, and will need treatment for the rest of my life.

You may be aware that I recently stepped down as president and a board member of the International Pain Foundation (iPain). It was a completely volunteer position. I have been advocating through many nonprofits since 2006 and have always been transparent about any funding that the charity or I received. I also have a degree from George Mason University in Psychology.

Which brings me back to the claims about addiction, opioids and patient advocacy that Dr. Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP), made in The Guardian article. This quote is from Kolodny about patient suicides:

“This is a really serious issue. But what the opioid advocates, many with industry ties, disclosed or undisclosed, pushed was this false narrative about an epidemic of suicide and so there was a manufactured backlash against the CDC guidelines.

“The notion that there are patients losing access to an effective treatment, and therefore they have no choice but to kill themselves because they’re in so much pain now, that’s a hoax. But the idea that someone in the context of acute withdrawal would kill themselves, that certainly could be real because it’s so excruciating.”

From the perspective of a pain patient and a former nonprofit board member, I want to set the record straight about Kolodny’s alleged “hoax.” Yes, addiction is a serious issue. Under-treatment of chronic pain is also a serious issue. Any mistreatment of people with chronic care challenges is an issue.

The healthcare system in the U.S. is working as it was designed and needs to be thrown out. We are all individuals and should be treated by the providers of our choosing to get the care that we need — not as the healthcare system dictates. Not every provider is great, not every patient is great, and no treatment works for everyone. 

In America, we live in a “free” society. I believe we should be able to choose our own care and moral stance. But I wonder why Kolodny believes his moral stance should supersede what a provider and patient feel is best, whether it’s addiction treatment, pain management or any particular choice of care.

We should have full access to whatever we are willing to do to our own bodies. I have said many times over the years that I do not want to be a guinea pig anymore. I work hard to manage my pain levels, my surroundings, my energy pennies, and the people around me.

‘Advocates With Industry Ties’

Kolodny claims that many “opioid advocates” have industry ties and manufactured a false narrative about patient suicides in a backlash against the CDC guideline.

As a patient advocate who has been working with nonprofits for almost 20 years, I believe that the pharmaceutical industry should be giving money to the pain community to help us with tools and resources that make our lives better.

People think it’s easy for advocacy groups to get funding from Pharma, but that is not true, at least for the small funding that I was involved with. I know firsthand the many checks and balances that are needed before any grant money is provided. It did not matter if it was $100 or $10,000. Nonprofits have to account for it on their tax returns and through audits.

Since 2015, grant money from Pharma for iPain completely stopped, even the small amounts that we were getting. We went from completing over 200 grant applications a year, and getting less than 5 percent of them approved, down to a 0% success rate. There is nothing to report when you receive nothing, which is how it is going now for most patient advocacy organizations and support groups.

Receiving nothing from Pharma did not change our opinions or goals. We found other ways to accomplish them on a shoestring budget. I wish it was easier, but being hard does not stop the movement, because it is a matter of life or death in too many cases. Our work at iPain continued, because it was never about spreading whatever Pharma wanted. It was always about helping patients get individualized care. And all options, including opioids, should be on the table.  

Our work continued on a smaller scale and more creatively than if we had a large budget to get things done. At about the same time that our funding dried up, social media took off and it became easier to reach more people and actually be heard. We were still able to accomplish our goals, at less cost and with less funding.

I do not have the time, energy or space in this column to go into the many financial ties — disclosed and undisclosed — that Kolodny and PROP have with law firms involved in opioid litigation, which funded their efforts to take opioids away from patients. Good God, what is the point of him being so moral in his own eyes, that he does not let other people choose what is best for them?  

Patients losing access to treatment is real. So are patients dying or contemplating suicide. I receive emails and calls from them regularly, even since stepping down from iPain.

The first patient I lost due to being cut off from medication was in 2012. She was one of my best friends at the time. I talked to her often. She was on a medication that was helping. The provider cut her off and put her on a different drug. Neither were opioids. She was stable and doing well with the first medication, but not on the second one. My friend decided that jumping out of a 10-story window to her death would be better than not having the medication that was giving her more quality of life.

Kolodny says someone in acute withdrawal might kill themselves because it is so excruciating. Yes, Dr. Kolodny, withdrawal is hard and you are forcing it on people who are already in pain, who did not need or ask for your opinion. That is the real hoax.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com 

Ideology Is Guiding Pain Care, Not Science

By Roger Chriss, PNN Columnist

An overarching question in pain management and the opioid crisis is whether or not prescription opioids have any value in treating chronic non-cancer pain. 

Some say that the answer is a resounding “No.” Studies to date on the effectiveness of opioids are often too small, methodologically weak or too short-term to be convincing. But these same studies are often used to claim lack of efficacy, and for the same reasons they cannot do that.

At present, we don’t know if or how well opioids work for chronic pain. To establish efficacy, we’d need major studies or clinical trials that run for years, using many hundreds or even thousands of patients. Opioids would need to be compared to placebo or other treatments for various forms of chronic non-cancer pain, from inflammatory and autoimmune conditions to neuropathies and genetic disorders.

Such studies have not been done. A U.S. government website that tracks clinical studies lists 685 trials for “opioids and chronic pain,” with several terminated or withdrawn, others just now recruiting, and only a handful completed. Many of these studies look at substance use disorders, tapering or de-prescribing, or are small-scale efforts at comparing two opioids.

There are no large-scale studies of opioids for chronic non-cancer pain getting started or underway at present.

There are over 14,500 studies on “opioids and chronic pain” listed in PubMed, a database maintained by the National Institutes of Health. One of the few that looked at long-term use of opioids is the 2018 SPACE study, which found that opioids were not superior to non-opioid medications over 12 months.

But the SPACE study has important limitations: It only looked at patients with chronic back pain or osteoarthritis of the hip and knee. Researchers also put the opioid tramadol in the non-opioid group and let some patients switch from the non-opioid to the opioid arm in order to achieve good analgesia.

Another study found that only one in five patients benefited from long-term opioid therapy, with young and middle-aged women showing the least improvement in pain and function. But this was a telephone survey that relied on a pain scale to assess outcomes, with no mention of diagnoses and no randomization or placebo control.

Similar studies with more positive outcomes can be found. According to a Cochrane review, the opioid tapentadol (Nucynta) worked better than oxycodone and a placebo in treating chronic musculoskeletal pain. But the clinical significance of this finding is uncertain.

In other words, we don’t have the kinds of studies we need to figure out if opioids work for chronic pain. This means that when people claim there is no good evidence for opioids in long-term pain management, they have a point. But for the same reason, there is no good evidence against opioid efficacy, either.

Of course, there is good evidence about opioid risks. As PNN reported, an Australian study found that people on long-term opioids do sometimes engage in risky behavior such as filling a prescription early. But this study didn’t find major risks of dose escalation, diversion or overdose that are often claimed to be common.

The solution would be to do major trials. But there seems to be little incentive to do this. The opioid crisis and associated ideological debate about drug legalization have combined with lawsuits and public health policy to remove any motivation to find out more about efficacy. The results of such a study could sway outcomes in the ongoing opioid litigation or ignite new lawsuits, or could even cripple advocacy groups on either side of the opioid divide.

There are, arguably, subtle incentives not to pursue high-quality clinical trials on opioids for long-term pain management. Instead, we’re seeing lots of meta-analyses, reviews, and retrospective studies, none of which is particularly convincing because summarizing old studies with known weaknesses generally cannot answer big questions.

For the foreseeable future, we may be stuck with ideology instead of science guiding clinical pain care.

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

Back to the Future in Pain Care

By Carol Levy, PNN Columnist

The start of another year started me thinking about my 42-year fight against trigeminal neuralgia (TN) and how things have changed in its diagnosis and treatment.

I was 26 when the pain started. It came out of the blue, like a lightning bolt inside the skin of my left temple. It was horrendous, lasting maybe 20 seconds or so, and then it subsided. After a clinic doctor diagnosed it as trigeminal neuralgia, I was repeatedly told it could not be TN because I did not meet the criteria for the diagnosis.

At that time, it was very simple: TN pain had to be in a specific anatomical area. Mine was. The pain also had to be spontaneously triggered by touch, no matter how slight. Mine was. But you had to be at least 60 years old or, if you had multiple sclerosis, over age 40 to have TN. I was only 26. Too young.

So, regardless of the pain being in the right place and occurring in the proper fashion, it had to be something else, although they had no idea what that might be. It took more than a year before someone finally recognized it as trigeminal neuralgia, despite my youth.

Over the years the definition and diagnostic criteria for TN have changed. There are now two recognized types of TN:

• Trigeminal Neuralgia 1: Intense, stabbing pain attacks affecting the mouth, cheek, nose, and/or other areas on one side of the face.

• Trigeminal Neuralgia 2: Less intense but constant dull aching or burning pain.

You can have both types of TN. I have constant pain, as well as spontaneous and triggered pain. Neither type includes an age factor. This makes it easier for a young person to be diagnosed with TN today. 

Changing Treatments

Not only has the definition changed, but so too have the treatment options. When mine started, there were less anti-convulsants to try, the first line of treatment for TN. Now there are many new medications, including botulinin (Botox) injections.  

Over the years I had many operations, some of them no longer in use. Now there are gamma knife and cyber procedures, things not even a glimmer in someone's eye when I was first diagnosed or being treated. 

Reflex Sympathetic Dystrophy (RSD) is another pain disorder which has come a long way. Even the name was changed, from RSD to CRPS (Complex Regional Pain Syndrome).

In 1981, I entered a residential pain program. There were only 8 of us. One was named Joanne, who had very weird, unbelievable symptoms and complaints, so weird even the doctor had trouble believing her.

Joanne said she had tremendous pain throughout her body, and trouble controlling her bowels and bladder. She insisted it all started right after a statue had fallen on her foot. It sounded fanciful at best. She seemed a perfect example of pain being psychological. 

If that happened today, Joanne’s complaints might be taken more seriously and she could be diagnosed with CRPS. But at that time, it was a disorder that did not appear on anyone's radar. 

Since then many new medications and treatment options have been devised or added to the armamentarium against CRPS, such as ketamine infusions, intrathecal pain pumps, hyperbaric oxygen therapy and bisphosphonates. The same is true for many of the other pain disorders. Research is ongoing, new medications and surgeries are being developed. 

We often lament that nothing new is being done for us. Where is the research? Where is the treatment that will finally give us relief? 

It can be hard to see sometimes where we have been vs. where we are now, much less where we may be going. But history shows that more progress is being made than most of us may realize. And that is a good thing. We have to look to the past to see not only how far we have come, but how much farther we still have to go.   

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.

3 Advances in Hormonal Pain Care

By Forest Tennant, MD, Guest Columnist

There are three new discoveries or innovations in hormonal pain care that I dearly love. I believe they are real trend-setters, but keep in mind that the “next big thing” may not endure.  Nevertheless, I’m so excited about these three newcomers to the hormone and pain care movement, that I wish to share them.

Hormone Derivative Treatment

Some really smart scientists know how to make derivatives or analogues out of the “real McCoy.” Why do this? Because the derivative can boost the potency of the basic hormone several fold. 

There are two hormonal derivatives that, in my hands, have been extremely beneficial to sub-groups of chronic pain patients.  The first is medroxyprogesterone, which is a derivative of progesterone.  In my experience, medroxyprogesterone is far more potent in treating intractable pain patients than is plain progesterone. 

I have administered medroxyprogesterone to intractable pain patients and most found that it reduced their pain and their need for opioids.  The causes of intractable pain in these patients were multiple and included Lyme disease, post-traumatic headache, post-stroke and arachnoiditis. We have often made a topical medroxyprogesterone (skin massage) cream for use over arthritic joints and over the lumbar spine of adhesive arachnoiditis patients.

The second hormone is nandrolone, which is a derivative of testosterone.  When a derivative is made from testosterone, it is often called an “anabolic steroid” because it grows tissue.

Anabolic steroids have a generally pejorative or negative view since they have been used to grow the muscles and nerves in athletes that wish to gain athletic advantage.  Don’t be too offended by the term.  After all, the pain patient needs to grow some nerves and muscle to relieve pain. 

The U.S. Food and Drug Administration has approved nandrolone for use in “wasting” or “catabolic” conditions that cause tissue degeneration.  Many severe pain patients qualify.  A big problem today in pain practice is the Ehlers-Danlos syndrome (EDS) patient whose nerves, muscles and connective tissue genetically and progressively degenerate. Nandrolone is proving to be a Godsend to some of these suffering individuals. 

One really good thing about the derivatives medroxyprogesterone and nandrolone is that patients can safely try these hormonal agents for only a month to see if they get a positive response.    

Medrol Test

Medrol is the commercial and best-known name for the cortisone derivative methylprednisolone. It’s an old drug, but ranks as a top-notch newbie because it is the cortisone derivative that best crosses the blood brain barrier and suppresses neuroinflammation. 

To date, we don’t yet have a reliable blood test to determine if there is neuroinflammation in the brain or spinal cord, but it is essential to know if active neuroinflammation is in the central nervous system (CNS). 

Step one on the mending road is to suppress and hopefully eliminate neuroinflammation.  A Medrol test is, in my experience, your best bet to know if you have active neuroinflammation.  There are 2 ways to take the Medrol test.  One is to take an injection of Medrol for 2 consecutive days.  The other is to obtain what is a 6-day dose pack.  You take a declining dose of Medrol over a 6-day period.  All MD’s, nurse practitioners and physician assistants are familiar with the Medrol dose pack. So ask for it.   

Here’s the payoff.  If you feel better with less pain and better physical function, appetite and sleep, you have just determined that you have active neuroinflammation that is not only causing pain today but will worsen your condition in future days. 

If you have active neuroinflammation, you will need to start medicinal agents that are known to suppress neuroinflammation.  If your Medrol test is negative -- meaning it didn’t reduce your pain or improve other symptoms -- it means you don’t have much neuroinflammation and that your pain is due to nerve damage and scarring.  In this case you will have to rely on symptomatic pain relievers and perhaps try some long-term neuro-regenerative anabolic hormones to hopefully regrow or revitalize some nerve tissue.  

Hormonal Extracts

Years ago, including the days of the medicine man and shaman, extracts of whole glands, particularly the adrenals, gonads, pancreas and thyroid, were given to the sick.  In the early part of the last century, this practice was known as “glandular medicine” and whole gland extracts were administered by practicing physicians. Many a person today still finds that an extract of thyroid (made by the Armour Company) is superior to a single component of the thyroid gland or a synthetic thyroid. 

Some commercial companies have brought back whole adrenal and gonadal extracts.  These extracts are non-prescription and are starting to be used by chronic pain patients.  To date, they appear to be essentially void of complications or side-effects. Some chronic pain patients are reporting positive results for pain reduction and improvement in energy, appetite and sleep.  They are a safe, inexpensive way for patients and physicians who don’t like steroids or cortisone.

Hormonal treatments for chronic pain patients are fundamentally essential if a chronic pain patient wants some curative effects. 

Although hormones are a great advance, with more progress to come, they will never be a total replacement for symptomatic care with opioids, neuropathic agents and medical devices. Many long-term intractable pain patients have damaged and scarred nervous systems that neither hormones nor other known treatment can cure. 

“Hormone treatments should be initiated as early as possible if a person develops chronic pain.  I recommend hormone blood testing at least twice a year.”

— Dr. Forest Tennant

Hormone treatments should be initiated as early as possible if a person develops chronic pain.  I recommend hormone blood testing at least twice a year with a six-hormone panel.  You should replenish any hormone that is low in the blood stream. 

The hormone oxytocin has, as one of its natural functions, pain relief.  It is an excellent short-term pain reliever that can be taken with other symptomatic pain relievers to avoid an opioid.  There are other hormones made in the CNS that protect nerve cells by suppressing neuroinflammation and then regenerating them. To download a full copy of my latest report on hormones and pain care, click here.

Hormones and their derivatives are beginning to be used by chronic pain patients.  All chronic pain patients can and should ask their medical practitioners for a short-term therapeutic trial to find one that fits them.  While one size doesn’t fit all, all can find one size that does fit.  It’s the way forward.  

Forest Tennant, MD, MPH, DrPH, recently retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis.

The Tennant Foundation has updated its free handbook for patients and families living with adhesive arachnoiditis and intractable pain. The handbook features the latest groundbreaking research on hormones and pain care. To see and download a copy, click here.

This report is provided as a public service by the Arachnoiditis Research and Education Project of the Tennant Foundation and is republished with permission. Correspondence should be sent to veractinc@msn.com

Pain Management Association Shutting Down

By Pat Anson, PNN Editor

An association of pain management providers that was a leading advocate for patient access to pain care is closing its doors. The board of directors of the Academy of Integrative Pain Management (AIPM) voted unanimously this week to cease operations, largely due to financial problems.  

“This is an incredibly difficult and sad decision,” said Bob Twillman, PhD, AIPM’s Executive Director. “Our message has never been more relevant than now, amid the nation’s opioid crisis, yet we have found it increasingly difficult to maintain the resources needed to sustain our efforts.”

For over three decades, AIPM promoted an “integrative model” of pain care that utilizes a variety of different treatments, including both drug and non-drug therapies.

Although that model has become a standard of pain care, AIPM’s membership has steadily declined due to demographic and other industry trends. With doctors under increasing scrutiny for opioid prescribing, pain management is not an attractive specialty for recent medical school graduates.

“Joining associations like ours just is not a high priority for younger health care providers, and decreased interest in attending in-person educational events has contributed to significantly decreased conference revenues for AIPM,” said W. Clay Jackson, MD, President of the Board of Directors.

The demonization of opioid medication by policymakers and politicians also played a major role, causing many drug makers to limit or drop their support for medical associations and patient advocacy groups.

“My understanding is that the decreased industry support is not limited to the pain space, but it is especially acute here because for many years it was the opioid manufacturers who were the greatest source of funding,” Twillman wrote in an email to PNN. “As recently as five years ago, it would not be unusual for a company to drop nearly $100,000 at a single conference, between big exhibit hall booths, grants for continuing education programs, sponsored meal programs, and items such as bags, lanyards, key cards, etc.

“But when the lawsuits against opioid manufacturers started to ramp up, the logical response from the manufacturers was to withdraw support. After all, if they are being accused of using groups like ours as ‘front organizations,’ then it is completely logical for them to stop any behavior that might be perceived that way.”

A 2018 report by Sen. Claire McCaskill (D-MO) even accused the AIPM and other industry supported groups of playing “a significant role” in starting the opioid epidemic.

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

"Sen. McCaskill and the others haven’t spent the necessary time talking to us to understand how we do things and what we have to offer," Twillman said at the time. "It appears that they’ve simply looked at how much money we got from a set of pharma companies, constructed a narrative about what that means, and published it."

Over a five-year period, McCaskill’s report found that AIPM received over $1.25 million in support from opioid makers. But the report failed to mention that AIPM also accepted funding from chiropractors, yoga therapists, acupuncturists and massage therapists.

“We’re all very sad at this turn of events, but we’re also very proud of what we accomplished.”

— Dr. Bob Twillman

Among other things, those donations helped AIPM host the 2017 Integrative Pain Care Policy Congress, a meeting that united dozens of providers, insurers, patients, researchers and policymakers.

The Congress adopted a consensus definition of integrative pain management that is “person-centered and focuses on maximizing function and wellness.”

Twillman says AIPM — formerly known as the American Academy of Pain Management — had less of a financial cushion than other pain organizations and was not able to adjust to changing times or the backlash against pain management.

“I fear for the future of those organizations, because I'm not sure this set of problems is going to get better, and I don't see the other organizations adapting as quickly as perhaps they should,” said Twillman, who has long stood up for patient rights and been a reliable source of common sense for PNN.

“I very much want to remain in a pain policy position if possible, because that is my real passion,” he said. “We're all very sad at this turn of events, but we're also very proud of what we accomplished, and can only hope that others will pick up the baton and continue the race while we look for ways to keep pursuing our passion.”

Trump and Clinton Pursue Same Policies in Pain Care

By Pat Anson, Editor

Chronic pain patients hoping for a dramatic change in federal pain care policies as a result of the presidential election are likely to be disappointed.

Both Donald Trump and Hillary Clinton favor more restrictions on opioid prescribing, as well as expanded access to addiction treatment programs, which are essentially the same policies being pursued by the Obama administration.

At a rally in New Hampshire this weekend, Trump outlined for the first time his strategy to combat the nation’s so-called opioid epidemic.

“DEA should reduce the amount of Schedule II opioids -- drugs like oxycodone, methadone and fentanyl -- that can be made and sold in the U.S. We have 5 percent of the world’s population, but use 80 percent of the prescription opioids,” Trump said in prepared remarks.

“I would also restore accountability to our Veterans Administration. Too many of our brave veterans have been prescribed these dangerous and addictive drugs by a VA that should have been paying them better attention.”

Trump said the Food and Drug Administration has been “too slow” in approving opioid pain medication with abuse deterrent formulas. And he said he would “lift the cap” on the number of patients that a doctor can treat with addiction treatment drugs.

donald trump

But the Republican nominee seemed confused about the difference between abuse deterrent formulas and addiction treatment drugs like buprenorphine (Suboxone).

"The FDA has been far too slow to approve abuse-deterring drugs. And when the FDA has approved these medications, the rules have been far too restrictive, severely limiting the number of authorized prescribers as well as the number of patients each doctor can treat," he said.

There are no limits on doctors for prescribing abuse deterrent drugs, but there are for the buprenorphine. In August, the Obama administration nearly tripled the number of patients that a doctor can treat with buprenorphine.

Trump also seemed unaware that the DEA recently said it would reduce the production quota for many opioids by 25 percent or more.

Trump claimed the Obama administration has worsened the nation’s drug problem by commuting the sentences of drug traffickers and by releasing “tens of thousands” of drug dealers early from prison. He also pledged to stop the flow of illegal drugs into the country.

“We will close the shipping loopholes that China and others are exploiting to send dangerous drugs across our borders in the hands of our own postal service. These traffickers use loopholes in the Postal Service to mail fentanyl and other drugs to users and dealers in the U.S.” said Trump.

“When I won the New Hampshire primary, I promised the people of New Hampshire that I would stop drugs from pouring into your communities. I am now doubling-down on that promise, and can guarantee you – we will not only stop the drugs from pouring in, but we will help all of those people so seriously addicted get the assistance they need to unchain themselves.”

Like Trump, Hillary Clinton has also promised to expand access to addiction treatment, but in more detail. Her Initiative to Combat America's Deadly Epidemic of Drug and Alcohol Addiction would allocate $10 billion in block grants to states to help fund substance abuse programs.  

Clinton also wants doctors to undergo training in opioid prescribing before they are licensed to practice and to require that they consult prescription drug databases before writing prescriptions for controlled substances.

One area where Clinton differs with Trump is that she puts less emphasis on law enforcement. Saying she wants to “end the era of mass incarceration,” Clinton has called for low-level drug offenders to get treatment and not just be locked up.

“For those who commit low-level, nonviolent drug offenses, I will reorient our federal criminal justice resources away from more incarceration and toward treatment and rehabilitation. Many states are already charting this course — I will challenge the rest to do the same,” Clinton wrote in an op/ed published in the New Hampshire Union Leader.

hillary clinton

In their public statements, neither Trump or Clinton have given any indication that they believe that  federal policies affecting pain care, such as the CDC’s opioid prescribing guidelines, have gone too far. If anything, they want to go further.

Clinton has endorsed a proposed tax on opioid pain medication sponsored by West Virginia Sen. Joe Manchin (D). If approved, the so-called Lifeboat Act would raise $2 billion annually to fund addiction treatment programs. The tax would be the first federal tax on a prescription drug ever levied on consumers.  

During a roundtable discussion about opioid overdoses in West Virginia, Clinton called the tax “a great idea” and said it was “one of the reasons why I am such an admirer of Sen. Manchin.”

Pain News Network has asked the Trump campaign where the Republican nominee stood on the opioid tax. We have yet to get a response.

Pain Patients Fed Up with Poor Treatment in Hospitals

By Pat Anson, Editor

Eight out of ten pain patients feel hospital staff have not been adequately trained in pain management and over half rate the quality of their pain care in hospitals as either poor or very poor, according to a new survey.

Over 1,250 acute and chronic pain patients participated in the online survey by Pain News Network and the International Pain Foundation (IPain). The survey findings -- supported by the comments and experiences of hundreds of pain patients -- amount to a stinging indictment of hospital pain care in the United States.

It’s not uncommon for pain patients to suffer from a variety of chronic conditions and diseases, and many told us they've been hospitalized several times. 

Asked to rate the overall quality of their medical care in hospitals, pain patients were fairly even-handed in their ratings. About a third said it was good or very good, 37% said it was fair and 29% said it was poor or very poor.

But some said they were so badly treated and traumatized by the experience, they’re afraid to go back.

“It's so bad that I will not seek treatment in an ER or hospital unless I really feel like my life is in jeopardy. They do not get it, they do not listen, and they do not care,” is how one pain patient put it.

“I refuse to go to ER. It will end up killing me because I know how sick I am, but I would rather die than deal with ignorant, condescending doctors and nurses,” wrote another.

HOW WOULD YOU RATE THE OVERALL QUALITY OF YOUR MEDICAL CARE IN HOSPITALS?

Several healthcare providers also wrote to us, admitting pain patients were often treated poorly.

"Many of my colleagues would refuse to medicate patients in pain, especially women in pain. They had many misconceptions that women were attention seeking, or exaggerating their pain. They also believed that even short term opioid therapy would 'create' addiction," wrote a nurse.

"I am a nurse anesthetist as well as a patient with fibromyalgia and severe arthritis," said another nurse. "The USA does a horrible job treating chronic pain. Too many suffer and too many commit suicide because of this."

When asked to rate only the quality of their pain treatment, the survey results were decidedly negative. Over 52% said their pain treatment in hospitals was poor or very poor, 25% rated it fair, and only 23% said it was good or very good.

Many patients complained that their pain went untreated or under-treated, even though pain was usually the primary reason they were admitted to a hospital. 

“I was at the ER once crying because I was in so much pain and I had a nurse tell me to shut up and cut the act. Never been treated so inhumanely,” said one pain patient.

“I've had to fight for proper pain management every time I've been in a hospital in the last 10 years. The DEA created this problem and the CDC is only reinforcing it. It's a travesty,” wrote another.

HOW WOULD YOU RATE THE QUALITY OF YOUR PAIN TREATMENT IN HOSPITALS?

“If I were an animal and was treated the way I was after surgery my owner would have been arrested for cruelty to an animal. As a human being, don't I deserve to be treated at least as well as an animal?” asked another pain sufferer.

"I've stopped going to hospitals even if I feel I'm having another stroke or heart attack, due to the horrific lack of pain control," wrote a patient who has multiple autoimmune diseases. "I'd rather die than be judged or be left writhing in pain."

"Pain is under-treated and at times downright ignored. I believe that this is leading to the cause of chronic pain in some patients," wrote another patient.

There is some evidence to support the claim that untreated or under-treated acute pain can turn into chronic pain. A study published in the Lancet warned that “an alarmingly high number of patients develop chronic pain after routine surgery.”

Yet when pain patients were asked in our survey if their pain was adequately controlled after surgery or treatment in a hospital, nearly two-thirds (64%) said no and only 34% said yes. 

“There is research demonstrating that the intensity of acute postoperative pain correlates with the risk of going on to develop chronic pain. This suggests that aggressive early therapy for postoperative pain is critical for preventing the pain from turning chronic,” says Cindy Steinberg, National Director of Policy and Advocacy for the U.S. Pain Foundation.

IF YOU EXPERIENCED PAIN AFTER A SURGERY OR TREATMENT IN A HOSPITAL, WAS IT ADEQUATELY CONTROLLED?

“Minimizing and deemphasizing the focus on controlling acute pain in hospital settings is likely going to set us up for potentially dramatic increases in the number of Americans with long term chronic pain.”

By treating acute pain so poorly, could our hospitals and emergency rooms be mass-producing future chronic pain patients?

And, if so, what can be done to stop it?

One solution – overwhelmingly supported by respondents to our survey – is better education in pain management for doctors, nurses and other healthcare providers.

Asked if they feel hospital staff are adequately train in pain management, nearly 83% of pain patients said no and just 9% said yes.  

“All staff should be educated and able to understand the difference between opioid dependency and opioid abuse," wrote one pain patient. "Over the last decade I have witnessed the quality of care for pain management plummet, and I have also observed increased chronic mistreatment of pain patients.”

"I am a nurse. Anyone who has chronic pain is labeled automatically as a drug seeker. The under-education about chronic pain is alarming. The way truthful patients are treated is just deplorable," wrote another pain sufferer.

OVERALL, DO YOU FEEL HOSPITAL STAFF ARE ADEQUATELY TRAINED IN PAIN MANAGEMENT?

"I think that hospital staff members are trained to be afraid of pain patients. They know what is necessary to treat pain, even chronic pain, but the fear that is instilled in them by oversight committees, the DEA, and Congress that all opiod pain prescriptions lead to drug addiction has led them to be afraid of treating pain patients. Education is the key," wrote another pain sufferer.

“In my 20+ years of having CRPS (Chronic Regional Pain Syndrome), I have never been to an ER where the staff even knew what it was,” wrote one of several readers who lamented that doctors and nurses are often ignorant about CRPS and RSD (Reflex Sympathetic Dystrophy).

“I have experienced this myself. The nurses didn’t understand my pain conditions and how my body reacted. They didn’t understand that I had additional needs," said Barby Ingle, president of IPain, who suffers from RSD. "I have recently had a provider ask, 'Does it really hurt that bad?' while doing a procedure on me under local anesthesia. I was screaming, crying, and moving so much that a normal patient gets 7 anesthetic shots. For me it took 28 and those were extremely painful.

“For a pain patient to go to a hospital for pain care and still have their pain unaddressed, under-treated, or misunderstood is clear evidence that we need better education for hospital staff."

The lack of pain education in medical schools is not new. A 2012 study published in the Journal of Pain  called pain education "lackluster" in the U.S. and Canada. The study of 117 medical schools found that less than 4% required a course in pain education and many did not have any pain courses.

Despite that, opioid prescribing guidelines released this month by the Centers for Disease Control and Prevention only briefly mention the agency will "work with partners to support clinician education" and even that vague promise is only focused on reducing opioid use. The same is true for the Food and Drug Administration, which recently announced several sweeping changes in its opioid policies, none of which address physician education.  

Only the recently adopted National Pain Strategy (NPS) acknowledges that "most health care professions’ education programs devote little time to education and training about pain and pain care," and suggests several ways to improve them.  But it's unclear how the NPS will ever be implemented, since it has no budget and relies on major policy changes involving medical schools, accreditation groups,  healthcare providers, and regulatory agencies. 

"I think it’s true that many hospital providers are poorly educated about pain management, and, especially if the patient’s condition is complex, understanding what is going on and finding a good solution can be very challenging,” said Bob Twillman, PhD, Executive Director of the American Academy of Pain Management, who believes providers need more empathy, as well as education.

"In my experience, I found that hospitalized patients were much more satisfied if they just felt like someone understood them and their pain, expressed a sense of caring, and made a strong effort to help. For those patients, even if you weren’t able to get their pain controlled for a little while, they really appreciated the fact that someone believed them and was trying to help. Sometimes, it’s as much about caring for the person with pain as it is treating the person with pain."

To see the complete survey results, click here.

Hospital Pain Care Needs Improvement

By Barby Ingle, Columnist 

Most hospital staffs are poorly trained in pain management, in my opinion. They are used to acute emergency situations and seeing many of the same ones over and over. So when a “zebra” (someone with a complex chronic condition) gets pushed in on a stretcher, they tend to have thoughts like these:

“Oh boy, I am going to have to work.”

“I don’t believe that this person is as bad as they say.”

“I have seen others in worse physical condition and this person looks ‘normal’ so they can’t be experiencing what they say is going on.”

I had an emergency room doctor tell me once that I didn’t have a blocked bladder. He got out a machine to measure how full my bladder was, but I think he never even turned it on. He said my bladder was empty.

I was in so much pain at the time that I told him he was reading it wrong and that my bladder was extremely full and hurt dramatically. I begged him use a catheter on me. Finally, probably after being sick of hearing me cry out in pain, he let the nurse use a catheter. Guess what? I was right. After my bladder was drained, the pain subsided and I was released to go home. The doctor apologized.

Another time I was taken to the hospital with multiple kidney stones. The ER rooms were full and patients on stretchers were lining the hallways. I was quietly crying from pain, curled up in a ball on my stretcher, watching as other patients were being paid attention to and given pain care. What were they doing different than me? They were loud and obnoxious.

I finally reached my breaking point. I allowed myself to yell out in pain and a few choice words also followed. In less than a minute, a nurse who had told me before that she couldn't give me anything for pain until they got me in a room was beside me with a dose of pain medication.

I know my body. Most people living with a chronic condition know their body and what is new, different, worse, or better. We just know. It’s time that providers trust us and realize that we are there for a reason. The vast majority of us are not trying to score opioids, but trying to get relief because we have reached our breaking point. 

One of the most important issues in an emergency room after lifesaving measures is the patient’s pain care. This is especially true in an acute situation, which is typically why we go to the emergency room in the first place. I don’t know many people who go to the ER or are hospitalized for chronic pain only.

The need for optimal pain care during hospitalization is high, but unfortunately proper and timely pain care is hit and miss at best.  

That’s why Pain News Network and the International Pain Foundation (IPain) are conducting a survey of pain patients about their treatment in hospitals.

The survey, which you can take by clicking here, will help us document how bad the problem is and what can be done to fix it.

Patients who try to be their own best advocate and take personal responsibility for their health should not be discarded because addicts or a small number of pain patients are abusing medications. Yes, abuse needs to be addressed. But pain should not be neglected. Controlling pain is important to the overall outcome of the emergency situation.

In past columns I have discussed the importance of asking for your pain medication at least 30 minutes before you may need them while in the hospital. That is because hospital nurses are trained to wait for you to ask for the medication before they order it -- even if the provider has it marked in your chart that pain medication is allowed. If you do not know to ask, your pain cycles and levels will become harder to control. I have been in this situation many times myself.

I know if I go to the hospital closest to my house, I will not get as good assistance with pain management as I would if I drove a little farther to another hospital. I have to consider other issues as well, such as how long I may have to stay at the hospital, will they have my regular medications, and will they have a staff that understands reflex sympathetic dystrophy and the secondary challenges that come with treating a ‘thick case file’ patient.

When I know I am being listened to as a valuable and knowledgeable patient and team member in my care, my pain will be better managed and I will rate the hospital higher in patient satisfaction surveys. When my underlying condition is not addressed, they’ll get a negative review.

Should a doctor be worried about how I am going to score them? Not if they treat me fairly, individually and as part of my treatment team. Does this mean they should just hand me whatever I ask for? No. It means that they need to use my personal assessment of pain as part of the planning for my care. Not doing so is neglecting the patient.

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.

Take Our Survey About Hospital Pain Treatment

By Pat Anson, Editor

Over the last few months, we’ve received hundreds of reader comments about the poor quality of their pain care in hospitals and emergency rooms. Many said they their pain was not treated or undertreated, while others said they were misdiagnosed or labelled as addicts if they asked for pain medication.

In an effort to keep the dialogue going and see just how common these problems are, Pain News Network and the International Pain Foundation (IPain) are conducting a survey of pain sufferers about their treatment in hospitals. The survey, which you can take by clicking here, should only take a few minutes to complete.

One reason we’re doing the survey is because a group of U.S. senators recently proposed that Medicare no longer require hospitals to ask patients about the quality of their pain care. The senators believe questioning patients about their pain leads to over-prescribing "because physicians may feel compelled to prescribe opioid pain relievers" to improve their hospital's ranking in patient satisfaction surveys.

“Why would we want to reduce pain care or stop asking about a person’s comfort and pain levels?” asked Barby Ingle, president of IPain, who knows from experience what it’s like to go untreated or undertreated in a hospital. Barby recently wrote a column about ways to make your hospital stay easier.

“The International Pain Foundation has been hearing increasing stories of undertreated pain care in ER and hospital settings over the past few years,” she said. “With such a large outcry from pain patients across the country saying ‘don’t go the hospital for pain, they don’t know how to treat pain,’ we know there is a problem. How can it be addressed? Surveying the pain community will help put a spotlight on this issue and show lawmakers, providers, insurance companies, and the pain community that we need more focus on our pain care needs, not less.”

A recent development that will affect future pain care in hospitals is the release of new guidelines for post-surgical pain management. The American Pain Society is encouraging physicians to use opioids alongside “multimodal therapies” such as acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDs), Lyrica, Neurontin, and cognitive behavioral therapy to treat patients in post-operative pain.

“Cognitive behavioral therapy? Really? So you cut into my nerves and tissue and muscles for 6 hours, and the pain is all in my head?” is what Janet Lynn wrote about that idea.

“So when the NSAIDs shut down a person’s kidneys or cause massive stomach irritation and bleeding is it time to give a patient a narcotic pain med?” asked Sharon Storck

Even doctors aren’t immune from poor treatment in hospitals. Family practice physician Lisa Kehrberg, who has severe abdominal pain from visceral neuropathy, recently wrote about one of her experiences in a hospital (see “My Journey From Doctor to Chronic Pain Patient”)

“The first surprise was, after admission, they refused to treat my excruciating pain. I was doubled over, rocking, vomiting, and crying with the worst pain of my life. Worse than labor, appendicitis, or anything else I'd experienced,” wrote Dr. Kerhberg. “Doctor after doctor walked in and witnessed this and continued to refuse ordering opioids. After all the tests were complete and normal, the doctors were very rude to me and implied this was all a psychological problem.”

Has this ever happened to you? Are you satisfied with the quality of your pain care in hospitals? Take our survey and let us know, by clicking here.