Pain Community Reacts to ‘Big Brother’ Medicare Policy

By Pat Anson, Editor

Here we go again.

That’s seems to be the reaction from many in the pain community to plans by the federal government to have pharmacists report suspicious activity by doctors who prescribe opioids to Medicare and Medicaid patients. (See “Medicare Takes Big Brother Approach to Opioid Abuse”)

The Centers for Medicare & Medicaid Services (CMS) says its new strategy to fight opioid abuse is aimed at “incentivizing prescribing behavior” by having pharmacists identify and report doctors who may be overprescribing opioids and patients who may be abusing them. 

“It is a terrible idea to pit pharmacist against physicians. It is an unbelievably perverse way to solve a serious healthcare problem that requires trust and collaboration among all the stakeholders,” said Lynn Webster, MD, past president of the American Academy of Pain Medicine. “Many, many people with pain and addiction are going to be harmed by this decision.”

“This will only serve to further increase stigma and increase distrust between patients, their prescribers, and pharmacists,” says Anne Fuqua, a former nurse, chronic pain sufferer and patient advocate.

“Just the words ‘incentivized prescribing’ makes me shudder.  It may well help root out a limited number of substance abusers and decrease pharmacy claims for Medicare Part D and Medicaid, but this is neither an effective manner to intervene when substance abuse does exist nor an ethical way to decrease prescription drug benefit claims.”

CMS contracts with dozens of private insurance companies to provide health coverage to about 54 million Americans through Medicare and nearly 70 million in state-run Medicaid programs. Under the new policy, information about doctors and patients who’ve been red flagged by pharmacists would be shared through a database with all insurers. The companies would be empowered to “investigate provider and beneficiary behaviors that may be indicative of fraud or abuse.” Violators could be dropped from insurance networks or lose their coverage.    

“A policy like this, that encourages pharmacists to report the prescriber or patient to the insurer for investigation, is dubious enough.  It's even more serious that the allegations would be entered in a database whether or not they are proven,” said Fuqua. “This would be like your doctor saying they think it's possible a patient is misusing medication and then emailing this to all the doctors in your state.  Every element of this reeks of big brother and directly contradicts treating addiction as a health issue.”

“It appears that CMS is dictating that pharmacists perform activities that are both outside of their training and the legal authority granted to them under the state's practice act,” said Steve Ariens, a retired pharmacist and patient advocate. “Pharmacists don't have access to the patient's entire medical records. They are being told by CMS to both diagnose and prescribe what is right for a patient.”

“Many of the pharmacists I know are already overworked with other regulations to the point of PDMP’s not being updated in a timely manner. I know of patients who have been affected by this personally,” said Barby Ingle, president of the International Pain Foundation and a PNN columnist.   

“What a pharmacist believes about a medication’s appropriateness should not come into play when they are not trained on the medical aspects of chronic conditions. Pharmacists know about medication, but not in-depth information on diseases we are living with and therefore should not be making the call on what they deem suspicious on behalf of a prescriber.”

Medicare Policy Based on CDC Guidelines

CMS is basing many of its policy decisions on opioid prescribing guidelines released last year by the Centers for Disease Control and Prevention. The guidelines, which discourage doctors from prescribing opioids for chronic pain, are voluntary and meant only for primary care physicians. But they are being widely adopted by insurers and doctors throughout the country as a “standard of care,” even though the scientific evidence supporting many of the guidelines is weak.

CMS seems unconcerned by that lack of evidence.

“Where sufficient evidence was not available, the CDC guidelines are based on expert opinion, as noted by the CDC,” the agency said in a 30-page briefing paper on its Opioid Misuse Strategy.

“The guidelines were formed by consensus of mostly people with agendas, biased against opioids, and totally insensitive to the needs of people in pain. The dose limits suggested by the CDC guidelines are arbitrary, not evidence based,” said Dr. Webster. “

“Let's be clear about the CDC guidelines.  A major reason the guidelines were developed was to reduce cost of drugs for payers.  If Medicare and Medicaid patients have an increasing incidence of opioid use disorder it is because these people do not have any alternative treatments for their pain other than an opioid. 

“If CMS is going to endorse the guidelines that have little to no science basis, then they should mandate all of the alternative therapies to opioids have unlimited coverage and that payers be mandated to provide adequate coverage for the underlying reasons that lead to opioid use and mental health disorders.  This would more likely reduce the incidence of an opioid use disorder.”

CMS is not requiring insurers to cover alternative pain therapies, such as massage and acupuncture, but says it is a prioritizing efforts to develop more evidence to support their use.

Public Not Informed

CMS convened a “cross-agency working group” to develop its opioid misuse strategy, and says it is “working closely” with other federal agencies such as the CDC, Food and Drug Administration, National Institutes of Health, and the White House Office of National Drug Control Policy. Members of the working group were not identified.

“CMS sought representatives from every component of the agency to ensure a broad range of expertise and perspectives. This diverse group assessed the benefits, limitations, and improvement opportunities within CMS’s current policies and programs. The group then defined desired outcomes from the perspective of CMS’s unique role as a leading payer of health care and identified key actions to achieve those outcomes,” the agency said in a statement on its website.

But CMS never held a public hearing or sought public comment prior to the strategy’s release last week. Several medical organizations and patient advocacy groups contacted by Pain News Network were unaware the policies were even being developed. 

“I was not even aware that these new CMS policies were being created and as a patient on Medicare, I think that we should have been notified at minimum,” said Barby Ingle. “Our opinion as patients in the program should have been a part of the voice of something that will affect proper and timely access to care.”

“Society would never tolerate any other patient group being treated in this manner,” said Anne Fuqua. “It's no accident that this provision has been given so little attention.”

On its website, CMS says it now welcomes “input from clinicians, patients, consumers, caregivers, manufacturers, researchers and others.” But it never makes clear how interested parties can comment or participate, such as a notice or public comment period published in the Federal Register.

The secretive actions of the agency – so far – are similar to those used by the CDC in developing its opioid prescribing guidelines. For several months, the CDC refused to identify members of a “core expert group” that helped draft the guidelines, which were released in September 2015 to a small and mostly selected online audience.

Initially, the public was given only 48 hours to comment on the CDC guidelines -- a decision that was reversed after a public outcry and threats of a lawsuit. Over 4,300 public comments were later received online, most of them in opposition to the guidelines, which were released virtually unchanged in March 2016.

CMS has not responded to repeated requests for an interview about its opioid misuse policies. It is not clear when the policies will be initiated, who was involved in drafting them, or where the idea came from.

CMS caved into political pressure last year when it agreed to drop pain related questions from patient satisfaction surveys. Politicians, hospitals, the American Medical Association, and other health organizations all claimed the questions encouraged the overprescribing of opioids. CMS officials said there was no evidence that was true, but agreed to eliminate the questions in 2017 patient surveys. The agency is still working on a future set of questions to replace them.

‘Substantial Evidence’ Marijuana Relieves Chronic Pain

By Pat Anson, Editor

A major new study released today on the health effects of medical marijuana has found “substantial evidence” that cannabis is an effective treatment for chronic pain in adults.

The lengthy study by a committee of the National Academies of Sciences, Engineering, and Medicine looked at over 10,000 scientific reports on marijuana and its active chemical compounds. The committee studied a range of possible impacts marijuana can have on pain, cancer, mental health, injuries and other health conditions.

Marijuana is now the most popular illicit drug in the United States, although it is legal under state law in 28 states and the District of Columbia.

A recent survey found over 22 million Americans have used marijuana in the past month, with nine out of ten users saying their primary use was recreational. Only about 10 percent reported they used cannabis solely for medical purposes. 

“For years the landscape of marijuana use has been rapidly shifting as more and more states are legalizing cannabis for the treatment of medical conditions and recreational use,” said Marie McCormick, the committee chair and a professor of pediatrics at Harvard Medical School.

“This growing acceptance, accessibility, and use of cannabis and its derivatives have raised important public health concerns.  Moreover, the lack of any aggregated knowledge of cannabis-related health effects has led to uncertainty about what, if any, are the harms or benefits from its use.  We conducted an in-depth and broad review of the most recent research to establish firmly what the science says and to highlight areas that still need further examination.”

The committee could find only five good-to-fair quality studies on whether cannabis was an effective treatment for chronic pain.  In all five studies, the cannabis was either smoked or vaporized, and did not include other delivery methods such as food, creams or oils infused with cannabinoids.  

“Thus, while the use of cannabis for the treatment of pain is supported by well-controlled clinical trials... very little is known about the efficacy, dose, routes of administration, or side effects of commonly used and commercially available cannabis products in the United States. Given the ubiquitous availability of cannabis products in much of the nation, more research is needed on the various forms, routes of administration, and combination of cannabinoids,” the committee found.

"It is wonderful to see that what I experience is now being recognized and respected in the medical community," said Ellen Lenox Smith, a PNN columnist who uses marijuana to relieve pain from Ehlers Danlos syndrome.

"I have been allowed nightly rest due to a simple teaspoon of oil at night. Somehow, the next day I rarely need to turn to more, for it continues to calm the body into the next day for me."

Others have also found that cannabis reduces their need for pain relievers. In states where medical marijuana is legal, the committee found growing evidence that users were replacing opioids with cannabis.

“Recent analyses of prescription data from Medicare Part D enrollees in states with medical access to cannabis suggest a significant reduction in the prescription of conventional pain medications,” the committee found. “Combined with the survey data suggesting that pain is one of the primary reasons for the use of medical cannabis, these recent reports suggest that a number of pain patients are replacing the use of opioids with cannabis, despite the fact that cannabis has not been approved by the U.S. Food and Drug Administration (FDA) for chronic pain.”

For adults muscle spasms caused by multiple sclerosis, the committee said there was substantial evidence that short-term use of oral cannabinoids – marijuana-based products that are orally ingested – improved their symptoms.  In adults with chemotherapy-induced nausea and vomiting, there was also conclusive evidence that oral cannabinoids were effective in treating those symptoms.

There was a lack of data on the effects of cannabis on the immune system, and insufficient evidence to support or refute a link between cannabis and adverse effects on the immune status of individuals with HIV.  Limited evidence does suggest that regular exposure to cannabis smoke may have anti-inflammatory effect.

Regarding the link between marijuana and cancer, the committee found evidence that suggests smoking cannabis does not increase the risk for cancers often associated with tobacco use. However, the committee did find that smoking cannabis on a regular basis was associated with more frequent chronic bronchitis, coughing and other respiratory issues.

To download a free copy of the study, click here.

Medicare Takes 'Big Brother' Approach to Opioid Abuse

By Pat Anson, Editor

A new strategy being developed by Medicare to combat the abuse of opioid pain medication will encourage pharmacists to report physicians who may be prescribing opioids inappropriately. Patients that a pharmacist believes are abusing opioids could also be referred for investigation.

The strategy, which has yet to be finalized, was outlined by the Centers for Medicare & Medicaid Services (CMS) last week in a 30-page report on the agency’s “Opioid Misuse Strategy.”  It has not been widely publicized by CMS or reported in the news media.

“Many Medicare and Medicaid beneficiaries and their families have experienced opioid use disorder, commonly referred to as addiction,” the agency says in the report’s executive summary.

“Given the growing body of evidence on the risks of misuse… CMS is outlining our agency’s strategy and the array of actions underway to address the national opioid misuse epidemic.”

One strategy CMS will explore is “incentivizing prescribing behavior” by encouraging physicians and pharmacists to consult with prescription drug monitoring programs (PDMPs) to review each patient’s prescription drug history. The use of PDMPs is fairly widespread already, but CMS would take it a step further by encouraging pharmacists to report suspicious activity by prescribers and patients.

“Pharmacies would be able to identify prescribers with potentially illicit prescribing practices or beneficiaries (patients) who may be overusing opioids. This information can be referred to health plans to investigate provider and beneficiary behaviors that may be indicative of fraud or abuse.”

Investigations of abuse or inappropriate prescribing would be shared with insurers enrolled in the giant Medicare/Medicaid system, even if the allegations are never proven. CMS contracts with dozens of private insurance companies to provide health insurance to about 54 million Americans through Medicare and nearly 70 million in Medicaid.

“Part D plans can use CMS’s information sharing platform to identify leads for their own internal investigations and can report actions they have taken. For example, if one plan sponsor suspects a provider of inappropriate prescribing behavior, it can alert other plans to that possibility so that those plans can conduct their own evaluations and take coordinated action if warranted.

“The results of these projects are provided to plan sponsors so that additional actions can be taken, including initiating new investigations, conducting audits, or terminating physicians and pharmacies from their network.”

“It looks like ‘Big Brother’ is going to watch everyone,” says Rick Martin, a retired Las Vegas pharmacist who suffers from chronic back pain.

“Pharmacists are going to be even more paranoid than they already are," Martin wrote in an email. “Retail pharmacists don't have time for this. They aren't the police. Nevada has a PDMP. It already shows a significant decrease in prescribing patterns over the last several years, so it is working.  With the CMS, just who decides what are appropriate quantities and proper prescribing habits?”

CMS Using CDC’s Prescribing Guidelines

In developing its strategy, CMS is relying heavily on prescribing guidelines released in 2016 by the Centers for Disease Control and Prevention, which discourage doctors from prescribing opioids for chronic pain. CMS says it will use the “evidence-based guidelines” to determine what constitutes inappropriate prescribing. The guidelines include a recommendation that opioids be limited to no more than 90 mg of morphine equivalent milligrams a day, a dose that many patients in severe chronic pain consider inadequate. 

The CDC maintains the guidelines are “voluntary” and intended only for primary care physicians. However, under the CMS strategy, the guidelines would apply to all prescribers, except those treating cancer or patients in palliative care.

“I just hate to see something that CDC itself said was voluntary, was a recommendation, and really isn’t all that specific if you really read it, get turned into something that creates bright red lines. And if you step across the line, you’re going to get yourself in trouble. I don’t think that’s right,” said Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management, the nation's largest pain management organization.

CMS says the additional scrutiny of doctors and patients is needed because “the Medicare population has among the highest and fastest-growing rates of diagnosed opioid use disorder,” which the agency estimates at 6 out of every 1,000 beneficiaries. Addiction rates are higher among Medicaid beneficiaries, at 8.7 patients for every 1,000, a figure 10 times higher than patients covered by private insurance plans.

“Because there is no systematic policy of screening for opioid use disorder and patients are unlikely to volunteer that they are misusing their medication or are using opioids like heroin because of discrimination and stigma, these rates are likely underestimates,” CMS says.

Rick Martin believes the Medicare policies will make physicians even less likely to prescribe opioids and pharmacists less likely to fill legitimate prescriptions.

“Pharmacists, like the docs, are just plain scared. If they don't know you, many are reluctant to fill,” said Martin, who is enrolled in Medicare's Part D prescription drug plan.

“One pharmacy I went to refused to fill my bona fide legitimate prescription because it exceeded an arbitrary amount. The manager didn't want any extra scrutiny from DEA, the home office, the PDMP, the board of pharmacy, or the (drug) wholesaler. Even though I was in the system for over 2 years and had previously had even higher amounts filled.

“One of the pain docs I am working with told me he has gotten numerous letters from Humana and one other (insurer) because he is in the upper 1% of dispensing opioids. Well, duh!  He is an exclusive pain management doctor. They didn't compare him with other pain doctors, just ALL doctors. Stupid. What will the CMS do on top of what goes on already?”

Bob Twillman worries the CMS strategy will create distrust between physicians and pharmacists.

“We’ve been trying to make efforts over the last few years to get pharmacists and physicians to work more closely together. I’m concerned this could increase suspicion between the two and be counter to that effort,” said Twillman. “Getting prescribers and pharmacists to work together is an important thing in enhancing patient safety and if we do something like this and short circuit that effort we’re doing more harm than we are good.”

CMS did not say when it planned to implement its Opioid Misuse Strategy or if public hearings would ever be held on them. The agency only said in coming weeks it would release “statements reflecting the agency’s Medicare and Medicaid goals.”

Also unclear is why CMS and the Department of Health and Human Services would take a major step affecting the healthcare of tens of millions of patients and their doctors in the final days of the Obama administration.

“The fact that this is coming out a couple of weeks before the new administration comes in does make it a little bit odd. It makes me wonder how many legs it has or whether it will carry over into the next administration,” said Twillman.

Experts Say Weather’s Not to Blame for Your Pain

By Pat Anson, Editor

The age old debate over weather’s impact on pain is heating up again with new research indicating that cold, rainy weather has no impact on symptoms associated with back pain or osteoarthritis.

Researchers at The George Institute for Global Health in Australia say damp weather makes people more aware of their pain, but the symptoms disappear as soon as the sun comes out – suggesting there’s a psychological cause.

“Human beings are very susceptible so it’s easy to see why we might only take note of pain on the days when it’s cold and rainy outside, but discount the days when they have symptoms but the weather is mild and sunny,” said Professor Chris Maher, director of the George Institute’s Musculoskeletal Division.  

“The belief that pain and inclement weather are linked dates back to Roman times. But our research suggests this belief may be based on the fact that people recall events that confirm their pre-existing views.”

Maher and his colleagues conducted two studies involving nearly 1,000 Australians with back pain and 345 people with osteoarthritis.

Using weather data from the Australian Bureau of Meteorology, researchers compared the weather at the time patients first noticed pain with weather conditions one week and one month before the onset of pain as a control measure. 

Results showed no association between back pain and temperature, humidity, air pressure, wind direction or precipitation. Warmer temperatures did slightly increase the chances of lower back pain, but the amount of the increase was not clinically important. 

A previous study on back pain and weather at The George Institute had similar findings, but received widespread criticism from the public.

“People were adamant that adverse weather conditions worsened their symptoms so we decided to go ahead with a new study based on data from new patients with both lower back pain and osteoarthritis. The results though were almost exactly the same – there is absolutely no link between pain and the weather in these conditions,” said Maher.

The back pain study was published in the journal Pain Medicine. The study on osteoarthritis was published in Osteoarthritis and Cartilage.

“People who suffer from either of these conditions should not focus on the weather as it does not have an important influence on your symptoms and it is outside your control,” said Associate Professor Manuela Ferreira.

The Greek philosopher Hippocrates in 400 B.C was one of the first to note that changes in the weather can affect pain levels. Although a large body of folklore has reinforced the belief that there is a link between weather and pain, the science behind it is mixed.

PNN readers say there’s little doubt in their minds that there’s a connection.

“I totally agree that rainy weather does affect pain. I have osteoarthritis and fibromyalgia, and pain is most severe when there is a change happening in the weather especially rain,” wrote Dee.

“It's been well established that the source of weather-related pain is a direct result from the variance in barometric pressure,” said Judith Bohr. “Changes in the intensity of that pressure is felt more acutely in the parts of the body where there are injuries, degenerative changes, surgeries, wherever there is an increased sensitivity because of inflammation.”

Others say they can predict the weather based on their pain levels.

“So many sunny days and I've said it’s going to rain. People thought I was crazy for a while, but now they know,” said Ashley. “My kids are always asking if it’s going to rain.”

A study currently underway in England suggests there is a connection between weather and pain. Over 9,000 people are participating in The University of Manchester’s Cloudy with a Chance of Pain project, using a special app on their smartphones to record their daily pain levels. The app also captures hourly weather conditions.

Preliminary results show that as the number of sunny days increase, the amount of time participants spend in severe pain decreases. When the weather turns rainy and cloudy, however, the amount of time people spent in severe pain increases.

New Efforts to Ban Kratom in Florida and New York

By Pat Anson, Editor

Federal efforts to ban kratom may be on the back burner – for now --- but that isn’t stopping lawmakers in Florida and New York from introducing bills that would make the sale of kratom illegal in those states.

Millions of Americans use the herbal supplement to alleviate symptoms of anxiety, depression, addiction and chronic pain.

Florida State Rep. Kristin Jacobs (D) has reintroduced legislation that would add mitragynine and 7-hydroxymitragynine – the two active ingredients in kratom – to the state’s list of controlled substances.  Selling, manufacturing or importing kratom in Florida would be a criminal misdemeanor if the bill becomes law.

Similar legislation has been reintroduced in New York by Assemblywoman Aileen Gunther (D), which would make the sale and distribution of kratom punishable with a fine of $2,000. After a third offense, retailers caught selling kratom would also lose their licenses to sell lottery tickets, alcohol and tobacco – a far bigger financial penalty.

A request for an interview with Gunther went unanswered.

“This would be the nail in the kratom coffin for New York wouldn't it?” said Fred Kaeser, the former Director of Health for New York City’s public schools.

Kaeser started using kratom a few months ago and found that it relieved his chronic back pain and reduced his need of opioid pain medication.

“So I find something that helps me to minimize my opioid consumption for my severe chronic pain, and this bill will now force me to reconsider resuming that opioid consumption. Truly amazing isn't it? Let's ban the very substance that helps you to limit your opioid intake,” said Kaeser in an email.

“Why ban something that has very limited empirical research behind it? Yet what research that does exist on kratom suggests promise as a real alternative to opioids. Why not advocate for more research to determine the true risk-benefit of this plant rather than a bill that shuts down that potential promise altogether?”

Kratom or its active ingredients are already illegal in six states (Alabama, Arkansas, Indiana, Tennessee, Vermont and Wisconsin), and came close to being banned nationwide last year.

The Drug Enforcement Administration announced plans in August for the emergency scheduling of kratom as a Schedule I Controlled Substance, the same classification given to heroin, LSD and marijuana. The DEA called kratom “an imminent hazard to public safety” and cited anecdotal reports that the herb was linked to several deaths.  

The emergency scheduling was withdrawn after an unprecedented lobbying campaign by kratom users, retailers and some members of Congress.  Over 23,000 comments were made on a federal website – the vast majority of them supporting the continued classification of kratom as a dietary supplement. The DEA said it would reevaluate its decision and ask the Food and Drug Administration to conduct a full scientific and medical review of kratom.  

Three previous attempts to ban the herb in Florida have failed, but Rep. Jacobs is not giving up. She calls kratom a “scourge on society” and said the American Kratom Association was spreading lies about the herb’s medical value.

“They have a story,” Jacobs told the Florida Politics blog. “Just like Hitler believed if you tell a lie over and over again, it becomes the truth.

“The Kratom Association stands to lose a lot of money if they aren’t able to continue profiting off the misery of addicts.”

In 2015, the Florida Department of Law Enforcement released a report stating that “no pervasive health issues” have been attributed to kratom and the herb “does not constitute a significant risk to the safety or welfare of Florida residents.”

A survey of over 6,400 kratom users by Pain News Network and the American Kratom Assocation found that 98 percent did not consider kratom a harmful or dangerous substance. Three out of four also said they did not get "high" from using kratom.

FDA Approves New Long Acting Painkiller

By Pat Anson, Editor

The U.S. Food and Drug Administration has approved a new extended release opioid pain medication with abuse deterrent properties.

Egalet Corporation announced Monday that the FDA has approved Arymo ER – a long-acting version of morphine -- for the management of pain severe enough to require daily, around-the-clock opioid treatment. It comes in the form of a pill that is very difficult to crush or liquefy, methods used by abusers to speed the release of an opioid into the bloodstream.

"With the majority of ER opioids in easy to abuse forms, it is important that healthcare professionals have additional treatment options like Arymo ER that are resistant to different methods of manipulation using a variety of tools," Bob Radie, president and CEO of Egalet said in a news release.

“Arymo ER has physical and chemical properties expected to make abuse by injection difficult which is important given it is the most common non-oral route of morphine abuse and the most dangerous.”

An FDA advisory panel recommended in a 18-1 vote last August that Arymo be approved. It is is the 7th opioid with abuse deterrent properties approved by the FDA. The other medications are OxyContin, Targiniq, Embeda, Hysingla, Morphabond, and Xtampza.

Arymo has been approved in three dosage strengths: 15 mg, 30 mg and 60 mg. Egalet plans to make the drug available in the first quarter of 2017.

Arymo is the first commercial product developed with Egalet’s Guardian technology, which incorporates the medication into a polymer matrix tablet to make it difficult to misuse or abuse.

“Guardian Technology results in tablets that are extremely hard, very difficult to chew, resistant to particle size reduction, and inhibit/block attempts at chemical extraction of the active pharmaceutical ingredient,” the company says in a statement on its website.

“In addition, the technology results in a viscous hydrogel on contact with liquid, making syringe-ability very difficult. These features are important to address the risk of accidental misuse (e.g., chewing) in patients with chronic pain, as well as intentional abuse using more rigorous methods of manipulation. “

The approval of abuse-deterrent medications is still somewhat controversial. Some medical professionals and anti-opioid activists say the technology does not completely prevent abuse and the drugs are still being misused by addicts.

Wear, Tear & Care: The Edge Desk

By Jennifer Kilgore, Columnist

Let’s talk about how much I hate sitting.

I have two neck fusions, a permanently messed-up thoracic spine, and bulging discs in the lumbar spine. All of these combined make it very difficult for me to sit for long periods of time. This was a large part of why I had to leave the traditional working world and work from home.

I am always looking for improvements to my physical work setup. I already have a kneeling chair that I’d used in my old office, and even that -- my best option -- is something I can only do for a limited period of time before my back flares.

It seemed that coupling a kneeling chair with a normal desk was sometimes an odd combination because the height difference could mean bending my wrists to type (bad) or adjusting my neck (also bad). For some reason, I couldn’t figure out the right height to put the kneeling chair to correlate with my computer monitor.

So the question became, is there a desk that’s made specifically to work with kneeling chairs?

Why yes! There is!

I backed the Edge Desk on Kickstarter in March 2016. Every square inch of my house is occupied by something and I have no extra space. I bought this desk without caring about that.

As of now the desk is sitting in the middle of my office, where it’s blocking the printer and two bookcases (it’s not a big office).

This thing came fully assembled in a huge box in the middle of December. Now I’ve had enough time to use it and gather my thoughts.

courtesy: edge desk

Thoughts on the Edge Desk

●       It’s ergonomic

There’s something about kneeling that makes you sit up straight. It’s not an uncomfortable sort of straight, though -- a lot of the pressure is taken by your shins and thighs. Most importantly, it doesn’t bother your shins or knees, or at least it shouldn’t. This ensures proper alignment of the spine. I actually also felt like it kept me alert and more awake at my desk in a way that normal chairs do not.

●       It’s compact and light

I am not a strong person. Let’s get this out of the way right now. I am basically an anthropomorphic noodle. However, I can manipulate this desk myself if I try. It’s still something I’d ask my husband to carry for me, were that option to arise -- it’s 25 lbs., though it folds down to an impressive 6 inches and can fit underneath a twin bed for storage. So, once I decide to move it from its current position in the middle of my office, it won’t take up too much room. 

●       Angle of the easel

The really cool thing about this desk is the connected tabletop. It can be flat, or it can tilt at an angle, like an artist’s easel. It can also tilt at a very sharp degree, like an architect’s table.

Most of my work is done on a computer, which this desk can still accommodate, but as some of my spine damage affects my hands, I’ve been trying to think of interesting new activities to work on my manual dexterity. I’ve tried knitting, and now I’m experimenting with calligraphy. This new desk is great for that purpose.

I’m perfectly okay with letting this desk float around my house until we can find a proper place for it. It’s very portable, so at least it won’t be difficult to move around!

courtesy: edge desk

All in all, I quite like the Edge Desk. It’s very good for people who require an ergonomic setup that is gentle on the spine, yet it’s sturdy enough to travel to an office if needed. And it’s a talking piece, because who else has anything like it?

You can purchase the Edge Desk for $350 through the company’s website.

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

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

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

Will End of Obamacare Hurt the Chronically Sick?

By Barby Ingle, Columnist

When a pebble is thrown into a pond, it creates a ripple effect that is noticeable, but no long-term damage occurs.

But if an asteroid were to land in the ocean, it could be catastrophic to all life on earth. We are simply not prepared for such a disaster.

The chronic pain community was hit by an asteroid of sorts last year with the release of the CDC’s opioid prescribing guidelines. The tsunamis are still hitting patients in its aftermath. To make any change to the healthcare system without having something to replace it is never a good idea.

Now we are anxiously waiting for details on what President-Elect Donald Trump and the Republican-led Congress will offer to replace Obamacare.

Although things won’t change overnight, the early signs are that “Trumpcare” could affect the already limited healthcare that the poor, elderly and chronically ill receive.

Some of you who are not chronically ill may feel like I am saying the sky is falling. But many of us are already unable to afford proper and timely treatment with the coverage we have now, because the system is set up to give priority to acute care, not chronic care.

Republican lawmakers can’t wait until Obamacare is repealed and replaced. But they need to take the time to develop a system that is effective for patients, providers, educational institutions, insurance companies, pharmaceutical companies and government agencies. Patients and providers are far too often left out of the discussion about treating the chronically ill and appropriate compensation for those providing their care.

In the first few days of 2017, GOP leaders such as House Speaker Paul Ryan and Health and Human Services Secretary-nominee Dr. Tom Price announced that they will target the Medicare system with major restructuring. They have not yet offered any details on their plans, but say they will lower healthcare costs for taxpayers. 

Medicare is an east target. With the number of elderly increasing as baby boomers move into retirement age, it’s inevitable that health care costs are going to increase. In 2015, Medicare spending grew 4.5% to $646 billion, and Medicaid grew twice as fast, by 9.7% to $545 billion.

"Value-Based" Medicine

Based on their recent announcement, congressional leaders are likely to try to convert Medicaid from an entitlement program for low-income, elderly and disabled Americans to one that is “value based” with fixed federal contributions to the states. They have not yet offered details on how those payments would be calculated or whether they would keep pace with inflation. 

Measuring a providers’ pay using a value based system is not going to work with chronic illness. There is not enough incentive in the current system that gives providers the compensation they need. We have already seen many providers across the country choose to stop treating people with chronic pain diseases. 

Every patient is also different. There is no one-size-fits-all cure for any disease. Two people can be given the same medication for cancer, and while it may work for one patient, the other one may have to try other treatments. This is the same for every single chronic disease. 

A person who breaks a bone can go to the emergency room, get the bone set, and wear a cast while it heals. They don’t have to think about how they are going to keep living with an incurable disease and the roadblocks they have to face in getting treatment.

Now we have people who don’t understand the complexity of treatment for chronic care patients deciding what additional roadblocks they can put up to keep costs down. 

Can we start by paying Congress with a value based system, like they want to do with our providers? Can we punish lawmakers with fines for needing extra hearings to get a bill passed or blocked? I don’t think so. Yet the current leadership wants states to provide better healthcare at a lower cost by giving them greater flexibility in setting eligibility and benefits. I see it as taking away even more of the limited coverage we currently have. 

Without federal guidelines, states will push poor people out of programs, eliminate important benefits, and cut already-low payment rates to providers to save money.

I remember a time in Arizona when poor men and women qualified for state assistance for health and food. Now, you must have children to qualify for many of our assistance programs. 

Every state is different in what its Medicaid program covers and the eligibility requirement. Giving additional incentives states to “cut costs” instead of putting the focus on patient care is a big mistake and will cost society more in the long run. 

It reminds me of something I have seen in the insurance industry. Insurers want to lower emergency room costs, so they put payment practices in place to discourage chronic care patients from seeking the care they need. 

I have personally been in the position of not wanting to go to the ER because I knew they wouldn’t do anything to help me. As soon as the attending doctor sees my complicated medical history, they don’t want to treat me for the acute issue that I am having due to the extra precautions they need to take due to my chronic disease. They spend more time trying to find another hospital to transfer me to than they spend working on me! 

This past September, I had two hospital doctors fight in front of me because one didn’t want to be my attending provider. I am a complicated case, and he knew he was not going to be compensated properly for taking care of me. The outcome was leaving me in the emergency room for over 12 hours before getting me a room. This gave him enough time to pressure me to check myself out and head to another hospital, which was suggested more than once. 

The emergency room provider knew I needed to be in the hospital, so she loudly spoke up to keep me there and worked hard to help me as best she could. The delays in getting me treatment only wound up increasing the insurance bill.

New congressional proposals would phase out enhanced federal payments to the states to cover low-income adults. States need to save money as well, so what will they do to offset these costs? They will either raise taxes or cut what is covered to those in need. Long-term care coverage items seem to get cut first, as they are the most costly. 

President-elect Trump campaigned on not touching Medicare and promised to make sure everyone has access to healthcare. But we don’t know whether he will go along with the healthcare agendas of top congressional leaders. We do know that the Trump administration is receptive to the states' Medicaid waiver proposals. This would impose more patient-responsibility requirements. Chronic care patients already have trouble paying insurance premiums, sustaining employment, and dealing with illnesses that last a lifetime. Putting time limits on benefits for a chronically ill person is ridiculous.

Congressional leaders are now saying they are working to turn Medicare into a program that would pay private plans and the traditional fee-for-service program a fixed amount per beneficiary by 2024. If traditional Medicare competes with private plans on equal terms, there will be a loss in coverage of long-term care needs for the chronically ill. 

We are not equal to a healthy working individual and our coverage needs are critically different. It is also important to remember those who are disabled and qualify for Medicare have earned it by paying into the system when they could work. Demanding someone to be engaged in meaningful work to receive Medicare benefits when they are disabled is ridiculous.  

Let’s not wait to move until the asteroid hits. Let us unite and voice our needs so we are not overlooked as these new policies are developed. Let’s demand that our congressional leaders give chronically ill patients a seat at the table, and take the time to create a health system that is right for all Americans. Don’t let them forsake the chronically ill to save money. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.

Finding the Right Doctor to Treat Fibromyalgia

By Lana Barhum, Columnist

Numerous studies show patients have better health outcomes when they have a doctor they trust and who listens to their health concerns.  Further, patients who trust their doctor are more likely listen to their advice and be compliant with treatment.

According to a 2014 breakdown of 13 clinical studies, a good doctor-patient relationship can have significant effects on positive health outcomes. The research, published in the PLOS One online journal, looked at studies where doctors were randomly assigned to either practice their normal care methods or take additional training to provide more empathy and patient focused care. The health benefits of patient focused care showed measurable results towards better patient outcomes. 

"The patient-clinician relationship has a small, but statistically significant effect on healthcare outcomes,” the researchers found.  

If you think you might have fibromyalgia, you will need to work closely with your doctor to diagnose and treat it.  You want a doctor who is knowledgeable about fibromyalgia and treatment options, including medicinal and non-medicinal therapies. 

In addition, your doctor should be someone you can confide in when you have concerns about treatments, symptoms, pain and lifestyle.

What Doctors Treat Fibromyalgia?

The American College of Rheumatology’s (ACR) updated fibromyalgia diagnostic criteria has made it easier for medical professionals to learn about the diagnosis and management of fibromyalgia. Still, not every doctor understands fibromyalgia, so it is important to find one who is up-to-date on the latest treatment and research. 

The following doctors can treat fibromyalgia:

Rheumatologists. Rheumatologists treat arthritis and other diseases of the bones, joints and muscles. This includes fibromyalgia, osteoarthritis and autoimmune arthritis, such as rheumatoid arthritis and lupus. 

Neurologists. A neurologist diagnoses and treats patients with nervous system disorders. Researchers have long speculated fibromyalgia is the result of a pain processing disorder, which causes amplified pain that shoots through the bodies of sufferers. 

"Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition," said Daniel Clauw, MD, a professor of anesthesiology at the University of Michigan.

Neurologists might be in the best position to treat fibromyalgia, as they are able to narrow down pain and symptoms and treat them more specifically. 

Pain Specialists.  Pain specialists are experts in diagnosis and treatment of chronic pain.  They offer a variety of treatments that include both medical and psychological therapies.  They generally work in private pain management clinics or as part of pain treatment centers in hospitals and university medical centers.

Family Practice Doctors and Internists. Traditionally, fibromyalgia fell under the scope of rheumatologists. These days, however, family practice doctors and general internists are seeing more patients with fibromyalgia.

Finding the Right Doctor

Here are a few tips to find the right doctor to treat your fibromyalgia:

Support Groups. Local fibromyalgia or arthritis support groups are great places for referrals to someone who treats fibromyalgia. 

Don’t limit yourself to rheumatologists.  While the ACR's rheumatologist search is a great resource, there is no reason to limit yourself.  Rheumatologists generally have demanding patient loads and it could take months to get in for an appointment. 

Check with pain clinics. Pain clinics may treat fibromyalgia patients separately from pain management.  They also provide referrals to fibromyalgia specialists.

Call your insurance company. Your insurance company may have a list of health care providers   covered by your policy that will also include doctors who treat fibromyalgia.

Your family practice doctor. Your family doctor likely knows someone who specializes in fibromyalgia treatment. He or she may also be qualified to treat you.

Ask around. Someone you trust, such as a loved one or co-worker, may know a fibromyalgia doctor.  You may also find someone else who is living with fibromyalgia.

Hospital websites. Hospital websites offer directories of medical providers on their websites.  They share doctor resumes and expertise, which may include experience in treating fibromyalgia.

My Experience Finding the Right Doctor

Because fibromyalgia is still controversial in the medical community, finding an informed doctor can help you to get the best control of your situation, the medical help you need, and relief for pain and symptoms. 

My current treating doctor -- a rheumatologist -- understands that our doctor-patient relationship is a partnership.  She respects my time, never makes me feel rushed and answers my questions.  Moreover, she is knowledgeable about my diagnosis, treatment plan and lifestyle, and doesn’t rely on my chart for answers.   But I didn’t always have a doctor I trusted, who listened and addressed my concerns.

In 2009, I didn’t know what a successful doctor-patient relationship looked like. I had a doctor who dismissed my worries, felt fibromyalgia could only be treated with diet, exercise, and anxiety medications, and did not want to hear how fibromyalgia affected my life as a young mother in my early 30s.  After that first miserable year with fibromyalgia, I came to the conclusion that if I wanted a healthy and thriving life, I would first have to find the right person to treat me.

Experience has taught me the relationship I have with my fibromyalgia doctor is the main determinant of how successful my treatments will be.   That first fibromyalgia doctor told me I'd be disabled within four years, but it has been over eight years and I am not disabled and still able to work and care for my family.  I know this couldn’t be possible if I continued to see that doctor. 

Finding a doctor who understands fibromyalgia may take time, but don’t get discouraged. Look for a doctor who is knowledgeable about fibromyalgia, believes in team work, is empathetic and who listens. 

And if you find yourself with one that isn't a good fit, as I did, it is okay to look for someone else. But keep the current one until you find someone new.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

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

A Pained Life: Keep it Simple

By Carol Levy, Columnist

Simple always seems… so simple to me, especially if it’s medical-related and even more so when it involves pain.

When I was 23, I developed a terrible pain in my left arm. And oddly, whenever I turned my head, the pulse in that arm disappeared. 

My journey was typical. I had trouble getting a diagnosis and was told it was psychological. The doctors were not thinking it through. How can someone psychologically obliterate a pulse? 

Finally, I was diagnosed with thoracic outlet syndrome (TOS). My symptoms were text book.

At the time, I was a physician assistant student and one doctor had lectured on TOS. Knowing I had it and without asking me, he directed students to have me turn my head and feel the pulse disappear.

Finally a thoracic surgeon told me, “I'll operate and remove your first rib. That should help.”

It sure did. I woke up from anesthesia and the pain was gone, and my pulse no longer disappearing.

A physical therapist also suggested an exercise: “Run your fingers up and down the wall a few times every day.” She never explained why.

“This is so silly,” I said to myself. After all, I was 23. I knew everything. What good can something this simple do? Just silliness. So I didn’t do it.

And I have had problems with my shoulder ever since. For over 40 years. All because simple seemed... too simple.

One more example. This time easy as pie escaped the doctors, except for one. 

Facial paralysis from trigeminal neuralgia sometimes causes my left eye to not close completely. As a result, my eye sometimes dries out to the point where it needs to be sewn closed. I abhor this, but I have had it done a number of times through the years. In truth, they wanted it to be done permanently 30 years ago. But they respected my choice not to.

On one occasion, three doctors agreed the eyelid had to be closed. Even the one who usually held out came on board. A fourth doctor was relatively new -- new enough to think outside the box -- and realized there might be another solution. 

Every night I taped the eye shut, using tissue paper and tape on both sides of the eye patch.

“Before we close it, let’s try this,” she said. “I want you to add one more piece of tape, directly down the middle.”

Seemed silly. You know, too simple. But I tried it anyway. And voila! The eye cleared within a day.

Between me and the doctors, simple often seems too silly, too unsophisticated, and unscientific. We are so accustomed to the harder answers: more drugs, more treatments, and more surgeries.

I regret greatly that the easy answer for my arm seemed so preposterous at the time that I refused to even try it. But I am so grateful that Dr. Smith saw the simple and made the suggestion anyway.

We get accustomed to high tech solutions, higher level treatments, stronger doses and more difficult surgeries.

I realized my journey is akin to going up a ladder. It is tempting to skip the first or even the second step on the ladder, forgetting or ignoring your pain. But each step carries more risk, and climbing the ladder becomes more difficult and dangerous the higher you go. 

Sometimes simple is exactly what we need.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

The Hidden Risk of Eye Strain From ‘Blue Light’

By Pat Anson, Editor

Do you get frequent headaches? Suffer from neck and shoulder pain? Have trouble getting to sleep?

If you spend a lot of time online, the culprit could be high energy visible (HEV) light – also known as blue light – emitted by your smartphone, laptop, desktop computer and other digital devices.

Blue light has a very short wavelength that penetrates deep into the eye. In its natural form, blue light is what makes the sky look blue and can have beneficial effects, such as boosting alertness and elevating mood. But the additional burden of artificial blue light is exposing us to more blue light waves than our eyes can handle.

According to a nationwide survey of nearly 10,000 adults by The Vision Council, nearly 9 out of 10 Americans use digital devices more than two hours per day, and over half regularly use two digital devices simultaneously.

Many don’t realize that prolonged exposure to blue light raises the risk of digital eye strain, age-related macular degeneration (AMD) and cataracts; and can also suppress of the body's natural release of melatonin, the hormone that regulates sleep.

"Patients underestimate how their technology use may be contributing to eye strain and do not consider ways to reduce this stress," says Dr. Justin Bazan, OD, medical adviser to The Vision Council.   

About a third of those surveyed reported having symptoms of digital eye strain, including neck and shoulder pain (30%), headache (23%), blurred vision (22%) and dry eyes (22%). 

More than 80% also report that they use digital devices in the hour before going to bed.  Eye exposure before bedtime has been shown to disrupt sleep patterns.

Prolonged blue light exposure is common in children. Three out of four Americans say their children get more than two hours of screen time a day. Half report these children suffer from headaches, neck and shoulder pain, irritated eyes, reduced attention span, poor behavior, or irritability.

The Vision Council says there are a number of easy steps to prevent digital eye strain:

• Follow the 20-20-20 rule, by taking a 20-second break from the screen every 20 minutes and looking at something 20 feet away
• Reduce overhead lighting to eliminate screen glare
• Position yourself at arm's distance away from computer screens
• Increase text size on devices to better define content on the screen

Specialized eyewear is also available with lenses that can block blue light, decrease brightness, minimize glare, and reduce the blurriness and pixilation of screens. The lenses are constructed for the mid-distance range at which users typically view a digital screen, and can be purchased with or without a prescription. 

"The optical industry has recognized and responded to the increase in digital habits and has developed lens and coating technology to protect the eyes from blue light, glare and other environmental stressors, ultimately to improve the way people see," says Ashley Mills, CEO of The Vision Council.

More information about blue light can be found at BlueLightExposed.com.

Relieving Pain Should Be a Pro-Life Issue

By Anne Fuqua, Guest Columnist

There’s an article in the Boston Globe this week about doctors who stopped prescribing opioid pain medication, even when they knew it might be harmful to patients.

As a registered nurse, I never expected to be on the other side of this issue.  But primary generalized dystonia and surgical complications inducted me into the “chronic pain club” 17 years ago.

As a patient in Alabama, I can attest to the fact that there is an overwhelming atmosphere of fear among physicians about prescribing opioids.

In 2012, seven Alabama doctors were investigated for over-prescribing.  Two years later that number sky-rocketed to 44 investigations.  The very few doctors that still prescribe are now distrustful of their most reliable, long-term patients. 

When my own well-respected doctor of nine years left pain management out of fear for his license, I had my medical records sent to almost 60 different physicians in the state. 

None of them were willing to treat me.

This was the most difficult and physically painful time of my life.  In just a few weeks’ time, I went from driving and being thrilled to start a part-time job as an “Obamacare Navigator” to being barely able care for myself independently.  I had no quality of life whatsoever.  Over a year later, I still have lasting physical effects from the wear and tear of severe spasms on my body. 

Beyond simple pain relief, opioid medication has always exerted a direct effect on my dystonia and makes a huge difference.  It’s far more than the benefit I received from any of the medications typically prescribed for dystonia (and without their side effects).  I’m so grateful to have the life I have today, even if I don’t live in the same body I did before I was forced to taper my medications.

Of the nearly 60 doctors I contacted 18 months ago, not a single one is still treating chronic pain patients. Those that didn’t stop out of fear for their licenses have been investigated by the state medical board or raided by law enforcement. 

We have entered an era where politicians, bureaucrats and licensing board members are now practicing unlicensed medicine by dictating the care that healthcare professionals should provide. 

Forcing patients with chronic pain to suffer because some people abuse opioids is no different than jailing someone just because you think they might commit a crime someday. This type of government over-reach directly contradicts the principles on which our nation was founded

We need more emphasis on determining who is at risk of developing addiction and the ability to provide a necessary structure for their safe use of medication.  Treatment should be available without stigma for those who need it. 

The same grace of withholding stigma that we provide to addicts should also be given to chronic pain patients.  Responsible patients have done nothing to deserve the horrible stigma they often face because they require opioids for a decent quality of life. 

Life without quality isn’t living at all.  There is no more of a “pro-life” issue than controlling pain and providing quality of life.  If you are pro-life and don’t support physician-assisted death, then you need to support physician-assisted quality of life. And that means pain management that utilizes opioids when necessary. 

This isn’t a special interest issue.  It’s everyone’s business. If you haven’t been affected or known someone who has, you will.  As a society, it’s our moral imperative to care for the least among us.  Relieving pain is the least we can do – and when life expectancy is limited, it’s the most we can do.

Anne Fuqua has primary generalized dystonia.  She is a former registered nurse and does volunteer work with at-risk youth and in animal rescue.  Anne is very involved with patient advocacy efforts, pushing for access to all forms of therapy, including opioids.

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

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

Can Stem Cells Treat Arachnoiditis?

By Pat Anson, PNN Editor

Sara Bomar thought she’d be spending the rest of her life in a wheelchair or bedridden.

sara bomar davis and husband george

But the 54-year old Tennessee woman is not only walking again, she’s been able to resume her career as a doctor after an experimental stem cell treatment for her chronic back pain.

What makes her recovery all the more remarkable is that Bomar has arachnoiditis, a spinal disease that leaves many patients permanently disabled.  

“I am able to walk. I am able to workout at the Y. I am still careful. It’s not like I don’t ever have any pain, I do have a little bit from time to time. But it is nothing compared to what I had before,” says Bomar, who practices general medicine in the Nashville area.

Bomar’s back problems started in 2000 with a ruptured disc. Surgery, physical therapy, epidural steroid injections and spinal cord stimulators all failed to stop the pain and her condition worsened. By 2008, she was in a wheelchair and diagnosed with arachnoiditis, an inflammation of the arachnoid membrane that surrounds the spinal cord.

The inflammation causes scar tissue to build around spinal nerves, which begin to adhere or stick together. That is known as adhesive arachnoiditis, which causes burning or stinging pain that can be felt from head to toe. The disease is progressive and thought to be incurable.

Or is it?

Two years ago Bomar heard about innovative stem cell treatments being offered by Todd Malan, MD, at the Center for Regenerative Cell Medicine in Scottsdale, Arizona. At the time, Malan had successfully treated only one other patient with arachnoiditis, but in that case the disease was still in its early stages. Bomar’s arachnoiditis was more advanced, but she thought stem cells were worth trying.

“It was kind of a shot in the dark,” she says. “There was really nothing else.”

Stem Cells as “Seeker Hunters”

Most people think stem cells can only be found in bone marrow or human embryos, but Malan uses fat-derived stem cells found in the patient’s adipose (fatty) tissue.  When injected into the blood stream, Malan says these stem cells are “incredible seeker hunters” that can locate and repair damaged tissue, while reducing inflammation and improving circulation.

“The key is to understand that these stem cells are designed by the body to do this repair process,” Malan said. “What we’re trying to do with these procedures is to enhance the normal process that the body uses.”

Malan enhances the process further with a high-dose infusion of as many as 100 million stem cells. For patients with spinal cord or brain injuries, he also injects mannitol, a drug used to treat head trauma that apparently helps the stem cells pass through the blood-brain barrier into the central nervous system.  

In August 2014, Bomar received a high-dose infusion of her own stem cells through an IV in her arm. Within a week, she noticed that the blood circulation in her left leg seemed to be improving.

“My mom came and visited me three days after I had the procedure and she said, ‘You know, I think your foot looks a little pinker.’ And I looked down and said, ‘Gosh mom, you’re right.’”

A few days later, Bomar noticed reduced swelling in her feet and could put on shoes that she wasn’t able to wear before. Months later, she was able to exercise on an underwater treadmill and then an elliptical machine. There was also less pain.

“The pain started to lessen. It was slow, it wasn’t all at once. But over months, which I think was fantastic progress, that pain did lessen,” she remembers. “Arachnoiditis is a pain that you deal with constantly. And it was really something not to have that constantly. I remember at first just thinking, wait a minute. I don’t have any pain right now. That was pretty amazing.”

sara and daughter anna

Bomar’s condition has improved so much that she was able to vacation with her family in California last summer, and go hiking and bike riding.

Because Bomar still has metal in a spinal cord stimulator implanted in her back, an MRI can’t be taken to confirm if the nerves in her spine are still encased in scar tissue. But Malan is confident the scar tissue is either gone or the stem cells have created enough healthy nerve tissue to bypass the problem.

“The studies have been well documented, especially for scar tissue breakdown,” he says.

Malan has now treated about two dozen patients with arachnoiditis, but is careful not to say that a cure or treatment has been found. He says more studies are needed to confirm if his stem cell therapies are safe and effective. 

“We have not had a patient yet who hasn’t had a clinical response,” he told Pain News Network. “The vast majority of the patients with adhesive arachnoiditis or chemical arachnoiditis have gotten to a point where they say their quality of life has significantly improved.” 

“I believe the doctor. I think it could be a breakthrough,” says Forest Tennant, MD, a California pain physician who is one of the world’s leading experts on arachnoiditis.

Tennant plans to begin using stem cell treatments himself, along with other experimental therapies such as growth hormones. But he doesn’t think stem cells will work on patients with advanced cases of arachnoiditis.

“I do have two patients who have tried it and it did not work. But their cases were so far along. They were already bed-bound and paralyzed, and you can’t expect a treatment like that to help,” he said. “The disease has to be in its fairly early stages for it to work, would be my guess. We don’t know enough. It’s the old story of one case does not make a treatment, but one good case certainly stimulates investigation into that treatment. And that’s where we’re at with this.”

More Clinical Studies Needed

One issue that’s been holding up investigation is that most stem cell treatments have not been approved by the Food and Drug Administration. FDA commissioner Robert Califf, MD, was openly skeptical of stem cells derived from body fat (adipose tissue) in a commentary recently published in the New England Journal of Medicine.

“Stem cells derived from sources such as adipose tissue are being used to treat multiple orthopedic, neurologic, and other diseases. Often, these cells are being used in practice on the basis of minimal clinical evidence of safety or efficacy,” Califf wrote.

Dr. Malan bristles at the notion there is not enough evidence and blames the FDA for holding up stem cell research.

“The FDA hasn’t approved a single stem cell technology in 16 years in the United States,” he said. “These are approved therapies in other countries. And to make statements that there is inadequate evidence is ridiculous. The reason there is inadequate evidence is because the FDA has not permitted us to do anything but Phase I studies.”

Until more advanced studies are conducted and new stem cell therapies approved, the treatment that appears to have worked so well on Sara Bomar will not be widely available for patients who suffer from arachnoiditis. Dr. Tennant estimates as many as one million Americans may have the disease, many of them misdiagnosed with “failed back syndrome” or other spinal problems.

“It certainly helped me,” Bomar says of stem cell therapy. “As far as I’m aware, there is nothing else out there could provide this kind of relief.”

Few Pain Patients Become Long-Term Opioid Users

By Pat Anson, Editor

Less than two percent of patients with prescriptions for opioid pain medication become long-term opioid users, according to a large new study published online in the journal Pain.

Researchers at Indiana University studied a nationwide database of over 10 million patients who filed insurance claims for opioid prescriptions between 2004 and 2013. The study was designed to look at opioid use by patients with psychiatric and behavioral problems, but in the process uncovered data indicating that the overall risk of long term opioid use for six months or more was relatively rare for most patients.

“Of the 10,311,961 incident opioid recipients, only 1.7% received long-term opioids during follow-up,” wrote lead author Patrick Quinn, PhD, of Indiana University, Bloomington.

“The probability of transitioning from first fill to long-term opioids was 1.3% by 1.5 years after the first prescription fill, 2.1% by 3 years, 3.7% by 6 years, and 5.3% by 9 years. Fewer than half of long-term recipients met a stricter long-term definition (at least 183 days supply) during follow-up. The likelihood of receiving long-term opioids by this stricter definition was 1.0% by 3 years.”

Addiction treatment specialists and public health officials have long claimed that even short-term use of opioid medication quickly raises the risk of addiction and death.

“The bottom line here is that prescription opiates are as addictive as heroin. They’re dangerous drugs,” CDC Director Thomas Frieden recently told the Washington Post. “You take a few pills, you can be addicted for life. You take a few too many and you can die.”

The Indiana University researchers did find a “relatively modest” increase in long term opioid use by patients with depression, anxiety and other mental health conditions, and those taking psychoactive drugs. Rates of long-term use were 1.5 times higher for patients taking medications for attention-deficit disorder (ADHD); three times higher for those with previous substance use disorders other than opioids; and nearly nine times higher for those with previous opioid use disorders.

Ironically, the strongest risk for long-term opioid use was in patients being treated with buprenorphine (Suboxone), an addiction treatment drug.

“Patients with OUDs (opioid use disorders) and buprenorphine or naltrexone prescription fills were at substantially greater risk of transitioning to long-term opioids earlier in follow-up than were patients without these conditions or medications,” Quinn wrote.

The researchers also found that patients with a history of suicidal or self-injuring behavior were at greater risk of using prescription opioids long-term.

 “It is likely that patients with psychiatric problems are more likely to experience more severe pain symptoms or greater pain-related functional impairment, perhaps leading providers to prescribe more aggressively to address pain-related concerns,” Quinn said. “It is also possible that patients with comorbid pain and psychiatric conditions may be more likely to seek care repeatedly or from multiple treatment providers because of their greater symptom severity or perceived need for care, resulting in a higher rate of opioid receipt in aggregate.”

Quinn and his colleagues do not rule out opioid therapy for pain sufferers with psychiatric problems, but recommend that they be given mental health counseling “in conjunction with the use of long-term opioid therapy.”

Frieden to Resign as CDC Director

By Pat Anson, Editor

Dr. Thomas Frieden, who has headed the Centers for Disease Control and Prevention for nearly eight years and played a pivotal role in the agency’s opioid prescribing guidelines, plans to submit his resignation on January 20, the day of President-elect Donald Trump’s inauguration.   

Frieden disclosed his plans in a year-end interview with Reuters. The former New York City health commissioner did not say what he planned to do next.

Frieden’s resignation is not surprising, as incoming administrations usually do not retain the heads of federal agencies, most of whom are political appointees.  Food and Drug Commissioner Robert Califf, MD, who has only been in office for 10 months, has not been contacted by the Trump transition team and is also expected to be replaced, according to The Washington Post.

President-elect Trump has not yet said who his nominee will be to succeed Califf or who he will appoint to replace Frieden.

Frieden has an extensive background in epidemiology and infectious diseases, and his tenure at the CDC was marked by major efforts to combat outbreaks of the Ebola virus, fungal meningitis, influenza and the Zika virus. He also doggedly pursued a controversial campaign to put prescribing limits on opioid pain medication, an area traditionally overseen by the FDA.

“One of the most heartbreaking problems I’ve faced as CDC director is our nation’s opioid crisis,” Frieden recently wrote in a commentary published by Fox News. 

“This crisis was caused, in large part, by decades of prescribing too many opioids for too many conditions where they provide minimal benefit and is now made worse by wide availability of cheap, potent, and easily available illegal opioids: heroin, illicitly made fentanyl, and other, newer illicit synthetic opioids. These deadly drugs have found a ready market in people primed for addiction by misuse of prescription opioids.”

thomas frieden, md

But Frieden’s campaign to rein in opioid prescribing has failed to slow the soaring number of overdose deaths, which continued to rise throughout his tenure at CDC, killing 52,000 Americans last year alone.

His repeated claim that the use of prescription opioids by legitimate patients is “intertwined” with the overdose epidemic is also not supported by facts. Only a small percentage of pain patients become addicted to opioid medication or graduate to heroin and other illegal street drugs.

Yet Frieden remains a staunch supporter of the CDC guidelines, calling them an “excellent starting point” to prevent opioid abuse, even though the guidelines themselves state they are based on scientific evidence that is "low in quality."

“There are safer drugs and treatment approaches that can control pain as well or better than opioids for the vast majority of patients. We must reduce the number of Americans exposed to opioids for the first time, especially for conditions where the risks of opioids outweigh the benefits,” Frieden wrote.

“We must not forget what got us here in the first place. Doctors’ prudent use of the prescription pad and renewed commitment to treat pain more safely and effectively based on what we know now about opioids—as well as healthy awareness of the risks and benefits among patients prescribed these drugs—can change the path of the opioid epidemic.”

Frieden undoubtedly had good intentions, but his agency repeatedly showed a penchant for arrogance and contempt for the public while drafting the guidelines.  The CDC held no public hearings, and secretly consulted with addiction treatment specialists and special interest groups, but few pain patients or pain physicians.

The CDC finally unveiled the guidelines publicly in September 2015 to a select online audience. The agency didn’t make the guidelines available on its website or in any public form outside of the webinar, and allowed for only a 48-hour comment period. Only when faced with the threat of lawsuits and growing ridicule from patients, physicians and other federal agencies, did the agency reverse course and delay the guidelines for several months. They were released virtually unchanged in March 2016.

Although “voluntary” and meant only for primary care physicians, the guidelines have been widely adopted by pain specialists and other prescribers, and have even become law in several states. This was always the goal of the CDC.

Within a few months of their release, an online survey of nearly 2,000 pain patients found that over two-thirds had their opioid medication reduced or stopped by their doctors. Over half said they had contemplated suicide.

There have been anecdotal reports of suicides increasing in the pain community. A recent story we did about the suicide of a Vermont man who was cut off from opioids and abandoned by his doctor provoked quite a response from readers.

“This situation has got to be stopped before any more people commit suicide to escape the pain. I also suffer from chronic pain and my medications have been cut back so far they no longer work worth a damn,” Michael wrote to us.

“I'm facing the very same thing right now. I'm in utter agony,” said LadyV. “In my doctor’s office I was told I have to reduce you, wean you off. I through no fault of my own suffered a horrible spinal injury and now no one cares.”

“When I was forcibly weaned off my pain meds last spring, due to the push by the DEA and CDC, I wrote a letter to the White House,” wrote Judith Metzger. “I mentioned a need for them to be watching suicide statistics related to uncontrolled chronic pain. There was never any mention that I was suicidal. Still, I got several calls from a suicide crisis team in DC! Reading this tragic story makes it clear that my prediction was sadly correct. When will they ever listen?”

In his commentary for Fox News, Frieden said it was “important that we look upstream and prevent opioid use disorder in the first place.”

In his final weeks at the CDC, now may be a good time for Frieden to look downstream at the havoc his prescribing guidelines have created.