How the CDC Gets Opioids So Wrong

By Crystal Lindell, Columnist

Look, I get it. I really do. Heroin is just such an easy thing to be against. I mean, it’s a drug. It’s a bad drug. It’s illegal. And people literally die after using it.

What’s not to hate?

But here’s the problem. Somewhere in this conversation about how heroin is bad, people started thinking that all opioids are bad. Even the legal ones. The ones that help people. The ones that actually save lives.

And thus, we have now ended up with another government agency trying to regulate medications that so many of us need. Not medications we want. Or that we think might be good. Medications we need.  

Last month the Centers for Disease Control and Prevention (CDC) released new draft guidelines that would -- if adopted-- sharply reduce the prescribing of opioids for both chronic and acute pain in the U.S. It’s mostly an effort to curb heroin use and non-medical use of opioids. Which, again, I get. Those are easy things to hate.

The CDC has since come out and said they would review the guidelines and look at public input, before finalizing them. But what changes, if any, they’ll make is unclear.

Among the 12 guidelines are recommendations like doctors should only prescribe opioids as a last resort, and chronic pain patients should have comprehensive treatment plans that go beyond just handing them a bottle of hydrocodone.

As someone who literally needs daily morphine to take showers, I’m extremely wary about the recommendations. And I’m also extremely weary of how the CDC chose to announce them.

They revealed all of them during an online webinar, which I wasn’t able to attend live. Seeing as how it’s 2015 though, I assumed I’d be able to watch it later on demand via my computer. Alas, although the CDC recorded the webinar, it didn’t make it available to watch on demand. I even went so far as to reach out to their marketing person and ask for the slides or a special link, but I never got a response. The whole thing seems pretty shady.

Thankfully, Pain News Network editor Pat Anson did attend the webinar and was able to detail all 12 guidelines. The best way to explain how wrong the CDC is about all this is just to take them one by one. You can see the official language here, but I’m just going to use laymen’s terms to sum them up:

1. If possible, use “non-pharmacological therapy" and non-opioid pain relievers for treating chronic pain. Use opioids as a last resort.

First of all, because of all the stigma associated with opioids, many doctors are already doing this. But it’s to the detriment of those suffering. When I first got sick, the doctors tried to give me prescription-strength Aleve. It literally did nothing for me. And eventually I was in so much pain that I would lay in bed at night and plan out how I wanted to take a knife to my wrists in the bathtub. That’s not hyperbole, that’s the truth.

Eventually, the doctors gave me a really low dose of hydrocodone. It did nothing for me either, and it wasn’t until I tried doubling the dose, and then doubling that dose, that I realized I didn’t have to live every second of every day feeling like someone had just dropped a cinder block on my ribs and then stabbed me with a butcher knife.

Also, I’m guessing that by “non-opioids” they mean nerve medications like Cymbalta and Lyrica, which people have somehow started to believe are a one-to-one swap for opioids, without all the side effects. But that’s just not the case. Nerve medications come with their own set of horrible side effects and withdrawal symptoms, and many people, like myself, find that they don’t actually help treat the pain.

It took way too long for me to get the medications I needed. And requiring doctors to try everything else first will only exacerbate that. You wouldn’t tell someone who just go out of surgery that they should try acupuncture before giving them pain pills. And you shouldn’t do it with someone in chronic pain either.

2. Establish a treatment plan.

Well, duh. Doctors should be doing this even if they aren’t prescribing opioids.

Unfortunately, doctors aren’t neglecting to create treatment plans because they want to give away opioids like candy, they’re neglecting to create treatment plans because they don’t have the time or the patience to have these kind of in-depth conversations.

3. Discuss the risk and benefits of opioids with patients.

Again, duh. But this should apply to all prescription medications. There’s nothing special about opioids.

4. Favor short-acting opioids over extended-release/long acting opioids.

This is the recommendation that makes it most obvious that they didn’t actually consult with any chronic pain patients. Anyone who uses opioids will tell you how much better extended release pills are than short-acting, quick hit opioids.

That’s because extended release pills don’t result in that insane cycle that a typical hydrocodone dose will give you — a burst of pain relief, followed by a crash that leaves you begging for death, and reaching for more meds before it’s time for your next dose.

One of the best decisions I ever made was to go on eight-hour time release morphine. The steadiness of the dose has helped me maintain the same dosage for almost two years. And by avoiding the insane lows that come with short-acting opioids, my pain stays at a more manageable level.

5. Prescribe the lowest possible effective dose, and implement additional precautions when increasing the dosage to 50 mg (morphine equivalent) or more per day. Also, avoid going over 90 mg a day.

I’m just going to say it. I’m on as much as 60 mg of opioids on the daily. There. Now you know. I take a lot of drugs.

But you know why I take that many drugs? Because every day when I wake up it feels like I just got whacked in the chest with a baseball bat, and then hit by a freight train, and then thrown off a bridge. Every day. Again, that is not hyperbole. That is my life. And proposing arbitrary limits on how much medication you think I need to deal with is infuriating.

6. Long-term opioid use usually begins with treating acute pain. So, when opioids are used for acute pain, doctors should give out the lowest possible dose of short-acting opioids and they should only prescribe enough for three days or less.

Look, I’ve had surgery. And it took me a serious week to recover from having my gallbladder out. And I needed that hydrocodone every single day I was on it — all seven days. I’m glad the folks at the CDC can hop out of bed three days after having their stomach cut open, but we aren’t all so lucky.

7. Doctors need to check in with any patients on long-term opioids.

Again, duh. And again, this is something that should apply to any person on any drugs.

8. Doctors should go over the pros and cons of the drugs. Also, they should give patients naloxone if there’s a chance of things going wrong with the opioids.

Okay. Look. It’s always a good idea to go over the pros and cons of any drug. I’m not sure how many times I have to write this, but yes, doctors should do this with EVERY drug.

As for naloxone, I don’t personally feel like I need it because I only use my opioids responsibly. But if a doctor thinks it’s a good idea, I’m not going to argue about it. The key word there though is “doctor.” I don’t believe the CDC needs to be involved.

9. Doctors should review the patient’s history of controlled substances.

I mean, yeah, I guess if someone just got out of rehab for heroin that should probably be a red flag. But I don’t think someone with trigeminal neuralgia should be denied treatment because one time in high school they got caught with pot.

10. Providers should drug test everyone on long-term opioids.

Look, this is already pretty much policy across the country. While my doctor doesn’t do it to me, I did sign a contract saying he could. And, yes, it does kind of suck.

For example, what if you’re being under medicated and need some Mary Jane? What if you just don’t want to feel like a common criminal every time you go to the doctor? Or what if you already just peed? It sucks. And it just adds to the stigma that so many opioids patients already deal with.

11. Doctors should not prescribe opioids and benzodiazepines together.

If your doctor is doing this, find a new doctor. This is basic “these medications don’t mix” stuff.

12. Doctors should offer treatment for people with opioid use disorder (aka addiction to opioids).

Yes. Yes they should. It’s called medical care.

So there they are, all 12 guidelines. Most of them can be summed up as, “Doctors need to talk to their patients more.” And like I said, that’s a philosophy that could apply to all doctors, all patients, and all drugs.

It’s quite obvious from reading through these guidelines that the CDC didn’t really consult with anyone in chronic pain who is using opioids responsibly — and that’s really the worst part about all this.

Look, it’s not like I’m saying you should be able to get time-release morphine over the counter. I get that there has to be some regulation. And I truly do believe that doctors should do a better job explaining various drugs to patients before they hand them a script for hydrocodone.

But I think doctors need to do a better job explaining all drugs. And when the CDC releases uneducated guidelines like this without input from as many as 11.5 million Americans who are on long term opioid therapy, all they’re doing is perpetuating an unfair stigma that does more harm than good.

People who don’t know any better are always making off-handed remarks to me about how, “You need to get off all those drugs.” And I always stop whatever I’m doing to explain to them that it’s “all those drugs” that give me the ability to live my life. Would they rather I laid on the couch all day contemplating suicide? Because that is the alternative.

Again, no hyperbole. That’s just my life.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

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

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

Are the CDC Opioid Guidelines Really Voluntary?

By Pat Anson, Editor

When is a medical guideline voluntary and when does it become a “standard of practice” that doctors are expected to follow?

That is one of the key questions in the ongoing debate over controversial guidelines for opioid prescribing unveiled last month by the Centers for Disease Control and Prevention (CDC).

The draft guidelines recommend “non-pharmacological therapy” and other types of pain relievers as preferred treatments for chronic non-cancer pain. Smaller doses and quantities of opioids are also recommended when the drugs are used to treat acute or chronic pain.  A complete list of the guidelines can be found here.

The CDC says the guidelines are needed to help primary care providers. Many lack adequate training in pain management and opioid prescribing, yet they treat the vast majority of chronic pain patients.

“It’s important to note that CDC is not a regulatory agency, unlike the Food and Drug Administration.  Physicians are not required to use the guideline, instead it is intended to support informed clinical decision making regarding the provision of safer, more effective pain treatment for patients,” said Courtney Leland, a spokesperson for the CDC.

But the CDC’s own internal documents make clear that the agency’s ultimate goal is for the guidelines to be widely adopted.

“Efforts are required to disseminate the guideline and achieve widespread adoption and implementation of the recommendations in clinical settings,” the agency says in briefing papers obtained by Pain News Network.  “CDC is dedicated to translating this guideline into user-friendly materials for distribution and use by health systems, medical professional societies, insurers, public health departments, health information technology developers, and providers, and engaging in dissemination efforts.”

“Clearly the intent of CDC is that the guideline be distributed to and adopted by state public health entities and certifying organizations as if it had the legal authority of a regulation,” a representative with the American Cancer Society wrote in a recent letter to CDC Director Tom Frieden.  

The letter said the American Cancer Society “cannot endorse the proposed guidelines in any way” because they “have the potential to significantly limit cancer patient access to needed pain medicines.”

Experts and patient advocacy organizations say the guidelines – voluntary or not – could quickly be adopted by state licensing boards and have a chilling effect on doctors who prescribe opioids.

“If a healthcare provider receives correspondence from the CDC, the assumption can be made that more often than not, the healthcare provider will consider such correspondence relevant and necessary to follow so as to not face any backlash from the CDC or similar agency,” said Shaina Smith, Director of State Policy and Advocacy for the U.S. Pain Foundation, one of the nation’s largest patient advocacy organizations.

“A guideline coming from CDC will be viewed as having a stronger pedigree than a guideline coming from a professional society or other source, and will thus be more likely to be adopted as reflecting a standard of practice, or adopted as a rule by state licensing boards,” said Bob Twillman, PhD, Executive Director of the American Academy of Pain Management.

Once in place, Twillman says a guideline or rule could be used in court by a disgruntled patient to challenge the competency of their doctor.

“If a prescriber is sued, one of the things that will be raised at trial is whether or not the prescriber demonstrated that the care provided conforms to the standard of practice. Standard of practice is a bit of an ill-defined term, but I can guarantee you that one question that would be asked in making this determination is, ‘Did you, or did you not, provide care that conforms to the most up-to-date and evidence-based guidelines?’ Any prescriber who can’t show that the care in question conformed to guidelines is going to be in a world of hurt,” Twillman wrote in an email to Pain News Network.

“It can get further complicated because guidelines also come up in disciplinary hearings by licensing boards and other agencies. Again, the same question will be asked, and again, a prescriber whose treatment does not conform to guidelines will be in jeopardy.”

Guidelines Can Become Laws

Twillman says there are precedents for guidelines to turn into laws. Such was the case in Washington State in 2007, when the Agency Medical Director’s Group (AMDG) adopted what was then the nation’s toughest guidelines for physicians who treat pain and prescribe opioids. In 2010, Washington’s Governor signed many of those same guidelines into law, the first in the world to set specific dosing levels for opioids.

Interestingly, two key members of the AMDG were Drs. Gary Franklin and David Tauben, who now sit on CDC panels that are helping to develop and draft the agency’s opioid guidelines. A third CDC panelist, Dr. Jane Ballantyne, has spoken at several hearings in favor of the AMDG guidelines.

Ballantyne and Franklin are the President and Vice-President, respectively, of an advocacy group called Physicians for Responsible Prescribing (PROP), which seeks to reduce the overprescribing of opioid pain medication. Tauben is a board member of PROP, as are two other CDC panelists providing input on the opioid guidelines.

The CDC says it is only fulfilling its mandate to protect the public from a serious health issue.

“Although CDC has not previously issued guidelines on opioid prescribing, we have consulted on and supported guideline development by professional organizations,” said the CDC’s Leland, citing as an example guidelines developed by the American College of Emergency Physicians on the use of opioids in hospital emergency rooms.

“CDC is the nation's health protection agency, operating to strengthen our nation’s public health systems. One way we do this is by developing and issuing guidelines and recommendations on any number of health issues, including those guiding clinical practice,” Leland added. “Prescription drug abuse and overdose is a serious public health issue and improving the way opioids are prescribed through clinical practice guidelines can ensure patients have access to safer, more effective chronic pain treatment while reducing the number of people who misuse, abuse, or overdose.”

Leland says the agency is currently revising its draft opioid guidelines – after getting input from healthcare providers and some patients – and remains on track to finalize and release the guidelines in January 2016.

Benzos May Increase Dementia Risk

By Pat Anson, Editor

Anti-anxiety drugs often prescribed to chronic pain patients increase the risk of dementia and Alzheimer's disease when used long term, according to clinicians with the American College of Osteopathic Neurologists and Psychiatrists.

Benzodiazepines --  also known as benzos -- include brand name prescription drugs such as Valium, Ativan, Klonopin and Xanax. They were approved by the U.S. Food and Drug Administration to treat psychiatric conditions, but are also prescribed "off label" to treat bipolar disorder, insomnia, post traumatic stress disorder, and chronic pain.

A Canadian study of 9,000 patients found those who had taken a benzodiazepine for three months or less had about the same dementia risk as those who had never taken one.

But taking benzos for three to six months raised the risk of developing Alzheimer's by 32 percent, and taking them for more than six months boosted the risk by 84 percent.

Similar results were found by French researchers studying more than 1,000 elderly patients.

"Current research is extremely clear and physicians need to partner with their patients to move them into therapies, like anti-depressants, that are proven to be safer and more effective," saidHelene Alphonso, DO, Director of Osteopathic Medical Education at North Texas University Health Science Center in Fort Worth.

The case for limiting the use of benzodiazepines is particularly strong for patients 65 and older, who are more susceptible to falls, injuries, accidental overdose and death when taking the drugs. The American Geriatric Society in 2012 labeled the drugs "inappropriate" for treating insomnia, agitation or delirium because of those risks.

"It's imperative to transition older patients because we're seeing a very strong correlation between use of benzodiazepines and development of Alzheimer's disease and other dementias. While correlation certainly isn't causation, there's ample reason to avoid this class of drugs as a first-line therapy," said Alphonso.

In its draft guidelines for the prescribing of opioid pain medication, the Centers for Disease Control and Prevention (CDC) recommends that opioids and benzodiazepines not be prescribed concurrently whenever possible. A CDC study found that about 80% of unintentional overdose deaths associated with opioids also involved benzodiazepines. Nearly 6,500 people died from overdoses involving benzodiazepines in 2010.

Opioids, benzodiazepines and muscle relaxants are all central nervous system depressants. Mixing the drugs is potentially dangerous because their interaction can slow breathing and raise the risk of an overdose death.

In a study of over 35,000 patient visits for acute and chronic pain, recently published in the journal Pharmacoepidemiology and Drug Safety,  researchers found that the prescribing of benzodiazepines was three to four times more likely when opioids were also prescribed.

Over a third of the patients prescribed opioids for chronic musculoskeletal pain were given a sedative. And patients with a history of psychiatric and substance abuse disorders were even more likely to be co-prescribed opioids and sedatives.

"Multi drug use is the trailing edge of the opioid epidemic," said Mark Sullivan, MD, a professor of psychiatry and behavioral sciences at the University of Washington School of Medicine. "We are making progress on decreasing opioid prescribing, but co-prescribing of opioids and sedatives has not decreased.

"Patients who are on long-term combined opioid and benzodiazepine therapy are often on a treadmill. They feel relief when they take their medications and withdrawal when they stop, so they continue this combined therapy, even though many function poorly and some will die as a result."

Over 50,000 visits to emergency rooms in 2011 involved a combination of benzodiazepines and opioids, according to the Substance Abuse and Mental Health Services Administration (SAMHSA)

Sunlight May Delay Onset of Multiple Sclerosis

By Pat Anson, Editor

Exposure to sunlight may elevate your risk of sunburn, skin cancer and other health problems, but it appears to have a beneficial effect in delaying the onset of multiple sclerosis (MS).

Danish researchers found that MS patients who spent time in the sun every day during the summer as teenagers developed the disease later in life than those who spent their summers indoors. Their study, which was published in the online issue of Neurology, also found that people who were overweight at age 20 developed MS earlier.

"The factors that lead to developing MS are complex and we are still working to understand them all, but several studies have shown that vitamin D and sun exposure may have a protective effect on developing the disease," said study author Julie Hejgaard Laursen, MD, of Copenhagen University Hospital in Denmark. "This study suggests that sun exposure during the teenage years may even affect the age at onset of the disease."

MS is a chronic and incurable disease which attacks the body’s central nervous system, causing numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain.

Ultraviolet rays (UVB) in sunlight are a principal source of Vitamin D, which has a wide range of positive health effects, such as strengthening bones and inhibiting the growth of some cancers.

In the Danish study, over 1,100 people with MS filled out questionnaires and gave blood samples. They were put into two groups based on their sun habits during their teenage years: those who spent time in the sun every day and those who did not. They were also asked about their use of vitamin D supplements during their teenage years and how much fatty fish they ate at age 20.

The people who spent time in the sun every day had an average onset of MS that was nearly two years later than those who did not spend time in the sun. On average, they developed MS at age 33, compared to 31 for those who were not in the sun every day.

"It appears that both UVB rays from sunlight and vitamin D could be associated with a delayed onset of MS," Laursen said. "However, it's possible that other outdoor factors play a role, and these still have to be identified."

Those who were overweight at age 20 developed MS about 1.6 years earlier than those of average weight and 3.1 years earlier than those who were underweight.

Previous studies have shown a relationship between MS and childhood obesity. Obese people are also known to have lower blood levels of vitamin D.

"The relationship between weight and MS might be explained by a vitamin D deficiency, but there's not enough direct evidence to establish this yet," Laursen said.

"A limitation of the study is the risk of recall bias because participants were asked to remember their sun, eating and supplement habits from years before," Laursen said. "In particular, someone with a long history of MS and onset of the disease at an early age, may wrongly recall a poor sun exposure. Additionally, only Danish patients were included into the study, so there should be caution when extending the results to different ethnic groups living in different geographic locations."

Pain Meds Top Concern of Work Comp Industry

By Pat Anson, Editor

The use of opioid pain medication is the number one issue faced by the worker’s compensation industry, according to a new survey that calls the long-term use of opioids in the U.S. an “extremely significant problem” for insurers and employers.

The annual survey of nearly two dozen insurers, state worker compensation agencies and self-insured employers was conducted by CompPharma, a consortium of pharmacy benefit managers that helps members develop procedures to control work comp costs.

The survey found that drug spending by the worker compensation industry increased by 6.4% last year, the first increase since 2009. Pharmacy spending in work comp cases was estimated at between $5 and $7 billion in 2014.

“During the past several years long-term opioid use has become the single biggest concern identified by respondents. While program managers and work comp executives have long known about the relatively high usage of narcotics in work comp, the depth and breadth of understanding of the issue continues to increase. Throughout the survey, respondents mentioned narcotics, opioids, addiction, specific drugs, dependency, and related terms, even when responding to other questions,” CompPharma said in a report on the survey.

Asked to rate the severity of the opioid problem on a scale of one to five, respondents gave it an average ranking of 4.75, which was called “a clear indicator of the level of the industry’s anxiety over a problem that it was somewhat slow to fully grasp.”

Payers also expressed concern about the cost of new opioids and abuse deterrent opioids, which are formulated to make it more difficult for the drugs to be snorted or injected.

“They say follow the money well here you go,” said Lynn Webster, MD, past president of the American Academy of Pain Medicine. “If patient well-being and safety were the concern of payers they would rapidly adopt abuse deterrent formulations and lobby Congress to find safer and more effective therapies.  Neither are occurring.”

Webster said the cost of opioids was the “genesis for the anti-opioid movement” and claimed the work comp industry was fueling efforts to limit opioid prescribing.

“We need to ask why cost to payers trumps patients reporting effectiveness,” Webster said in an email to Pain News Network.  “There should be a Senate investigation to see if this has been an orchestrated attack.  If so it should be criminal.” 

Payers who were surveyed said they had developed a variety of ways to limit the cost of opioids or make them harder to get.

“Respondents noted several approaches to controlling cost, with a more diverse range of solutions and more specificity in solutions than we’ve previously seen. The majority of the respondents implemented programs, upgraded approaches, hired staff, or altered DUR (drug utilization review) processes pertaining to opioids. This shows how seriously these respondents take the issue,” the report states.

Payers were also concerned about physicians dispensing opioid pain medications out of their own offices, which often cost more than opioids obtained at a pharmacy.

“Physician dispensing also drastically and artificially inflates the cost of workers’ compensation pharmacy costs. Physician-dispensed prescriptions typically cost three to ten times the amount of the same prescription filled by a retail pharmacy. More recent studies point to longer claim duration, more claimants prescribed opioids for longer periods, higher overall medical costs, higher indemnity expense, and poorer outcomes associated with claims with physician-dispensed drugs,” the report said.

The survey also found a greater willingness on the part of the work comp industry to utilize urine drug testing. Four years ago, half of the survey respondents said they were using drug tests to monitor employees who had filed work comp claims. The 2014 survey found that three-quarters of respondents have implemented or will implement a drug testing program.

CDC Opioid Guidelines Being Revised

By Pat Anson, Editor

In the wake of growing criticism by pain sufferers and patient advocacy groups, the Centers for Disease Control and Prevention (CDC) is revising its controversial guidelines for primary care physicians who prescribe opioids.

“CDC is currently in the midst of the scientific process and the draft guidelines document is still being revised, without final language that we can disseminate at present. At each step of this process, we’ve incorporated feedback and revisions have been made.  We do not want clinicians using these guidelines until they are finalized,” said Courtney Leland, a CDC spokesperson in an email to Pain News Network.

The extent of the revisions is unclear and the agency says it is still on track to finalize the guidelines in January, 2016.

The draft guidelines released last month recommend “non-pharmacological therapy” and other types of pain relievers as preferred treatments for chronic non-cancer pain. Smaller doses and quantities of opioids are recommended for patients who continue using the drugs for acute and chronic pain.  A complete list of the guidelines can be found here.

“Prescription drug abuse and overdose is a serious public health issue and improving the way opioids are prescribed through clinical practice guidelines can ensure patients have access to safer, more effective chronic pain treatment while reducing the number of people who misuse, abuse, or overdose,” said Leland.

Many pain patients are worried the guidelines could further restrict their access to opioid pain medications. The CDC has also been criticized for a lack of transparency in developing the guidelines and for seeking little public input.

In a letter to CDC Director Tom Frieden, the American Cancer Society called for the guidelines’ development to be suspended until numerous issues are addressed.

“We believe the proposed guidelines have the potential to significantly limit cancer patient access to needed pain medicines. We have concerns about the lack of evidence on which the guidelines were based, the methodology used to develop the guidelines, and the transparency of the entire process,” wrote Christopher Hansen, President of the American Cancer Society Cancer Action Network.

“Our concerns are so serious that we cannot endorse the proposed guidelines in any way and suggest suspending the process until the methodological flaws are corrected and more evidence is available to support prescribing recommendations.”

Hansen’s letter was also addressed to Debra Houry, MD, Director of the CDC’s National Center for Injury Prevention and Control, which is developing of the guidelines.

In an email Monday to a “Stakeholders Review Group” composed mainly of physician organizations, Houry invited the groups to listen to a conference call on October 21 to update them on the drafting of the guidelines.  

“As a reminder, the recommendations in the document you reviewed are pre-decisional, draft, and confidential. We ask that you refrain from sharing them widely at this point because they are not yet final, will change based on the feedback we received through the various comment processes, and we do not want clinicians to refer to the guidelines until we complete the peer review, revisions, and clearance process,” Houry wrote.

Secrecy had surrounded the development of the guidelines from the beginning and continues today. Only a summary of the guidelines is available on a CDC website and the agency is no longer accepting public comments on them.

Even the number of public comments the agency has received about the guidelines is unclear. In her email to stakeholders, Houry said there were “more than 250 comments.” But Pain News Network was told there were “more than 1,200 comments from patients, health care professionals, and members of organizations.”

When asked to explain the discrepancy, a CDC spokesperson said the agency had actually received just 167 emails during the public comment period, “but note that this is just the number of emails and doesn’t necessarily equate with the number of comments incorporated within each of the email messages.”

As many as 11.5 million Americans are on long term opioid therapy. The American Cancer Society called on the CDC to give those patients and the public a better chance to review and comment on the guidelines.

“We have concerns that the attempts to solicit public input on the draft guidelines were cursory and did not allow adequate opportunity for thoughtful responses. While a public webinar was held to discuss the recommended guidelines, it was not well advertised and many interested parties were denied access because the webinar lacked sufficient capacity,” Hansen wrote in his letter to the CDC.

As Pain News Network has reported, over 50 invitations to the webinar were sent to groups representing physicians, insurance companies, pharmacists, anti-addiction advocacy groups and other special interests. Only two patient advocacy groups – the American Cancer Society and the American Chronic Pain Association (ACPA) – were invited.

“U.S. Pain Foundation was disappointed to have learned that the CDC drafted the proposed prescriber guidelines on opioid medications without, in the organization’s opinion, appropriately notifying the pain community at-large,” said Shaina Smith, Director of State Policy and Advocacy for the U.S. Pain Foundation, one of the nation’s largest patient advocacy organizations. “U.S. Pain feels it was not afforded the opportunity to participate in these important discussions which could have a significant impact on the lives of individuals with pain.

“Despite the CDC stating that 55 diverse organizations were invited to join the webinar's discussion, none of the collaborating patient advocacy organizations U.S. Pain works alongside were granted an invitation. Furthermore, pain patients were not alerted of this opportunity until after the guidelines were made available to the public.”

Repeated calls and emails to Penney Cowan, executive director of the American Chronic Pain Association (ACPA), for comment on the guidelines were not returned.

"We apologize, but Ms. Cowan has been traveling extensively and will not be back in the office until Oct 20th.  She indicated that she does not have time in her schedule to discuss this," a spokesperson for ACPA explained in an email.

Pain Patients Will Suffer in CDC Fight Against Addiction

By Anne Fuqua, Guest Columnist

Since its birth in 1946 following World War II, the Centers for Disease Control and Prevention (CDC) has been a world leader in combatting disease and human suffering.  The young agency earned worldwide acclaim through substantial contributions to our understanding of bacteria and the virtual elimination of malaria and typhus in the United States. The CDC provided a service to humanity with efforts attacking communicable diseases such polio, tuberculosis, and influenza.

In the latter part of the 20th century, the CDC expanded its role from fighting diseases to emerging health problems such as gun violence and workplace safety. Eventually the CDC’s National Center for Injury Prevention and Control was established – which is now tackling the prescription drug abuse problem by drafting new guidelines for physicians on the prescribing of opioid pain medications.

The CDC is recommending “non-pharmacological therapy” and other types of pain relievers as preferred treatments for chronic non-cancer pain. Smaller doses and quantities of opioids are also recommended.  A complete list of the guidelines can be found here.

The guidelines may seem reasonable at first sight.  But sadly, an agency that eliminated so much human suffering is now threatening to inflict more suffering on some of society's most vulnerable -- acute and chronic pain patients.

The population-based epidemiological approach that revolutionized efforts to control disease is simply not appropriate for the prescription drug abuse problem.  With communicable diseases, the focus is on preventing them from spreading to a larger population. But if the prescription drug abuse problem is attacked in this way, millions of people that need opioids could be deprived of them. 

Public health programs tend to prioritize the health of society as a whole as opposed to the individual. This was why tuberculosis sanatoriums were developed. They were seen as the most effective way to isolate and control the spread of that that deadly disease. 

But tuberculosis is different from prescription drug abuse in several ways. First, it is a communicable disease. And secondly, unlike opioids, tuberculosis has no known benefit and its presence only contributes to human suffering. 

When properly used, opioids are one of our greatest weapons against human suffering.

For reducing their use to be reasonable, we would have to accept that overprescribing is endemic and that more people are being hurt than harmed by opioids.  That is simply not true, as opioid prescribing and overdoses have been declining in recent years.  Many chronic pain patients during that period lost access to opioids as a result, because their doctors no longer prescribed them or pharmacists refused to fill their prescriptions. Some patients suffered so greatly they took their own lives. 

Statistics show that opioid addiction occurs infrequently in chronic pain patients. Current estimates suggest 8% to 12% of patients develop actual addiction. Opioid misuse is more common (21% to 29% of patients), but misuse entails a wide range of often benign behavior such as taking a medication early, taking an extra dose, or ceasing to take medication.  Yes, when a patient stops taking opioids because they are no longer in pain, it is often counted as “misuse.”

Another way to look at those statistics is that 90% of patients on opioids are not addicted and about 75% are strictly following their doctor’s orders. That's a pretty good compliance rate, is it not?

Putting efforts to fight drug abuse ahead of the compliant patient's need for pain medication is not good medicine and is simply unethical.  Pain control promotes physical activity, social functioning and workplace productivity.  It makes people healthier; physically, mentally and financially.  Take that away and you are promoting physical inactivity, isolation, depression, disability, and a host of other health and social problems.

Removing compliant patients from a successful opioid regimen and allowing uncontrolled pain and its consequences violates the Hippocratic Oath that demands physicians “first do no harm.”

How did we come to this? Why is the CDC even getting involved in prescribing?

When addiction specialist Andrew Kolodny, MD, and others from the advocacy group Physicians for Responsible Opioid Prescribing (PROP) failed to convince the Food and Drug Administration to adopt tougher warning labels for opioids, they regrouped and focused their lobbying on the CDC. They knew the agency was historically more accepting of measures limiting individual freedoms for the welfare of society as a whole.

It appears PROP offered their "expertise" to assist the CDC with efforts to combat addiction and overdoses. PROP even managed to get several of its board members on CDC advisory panels. PROP's focus on reducing opioid overprescribing, combined with the CDC's public health approach to disease eradication, created the perfect storm that became the CDC's Opioid Prescribing Guidelines. 

Sadly, the CDC’s legacy of reducing disease and human suffering is now being threatened by these guidelines – which will increase the suffering of patients who dutifully follow their doctor’s instructions. The welfare of these patients cannot and should not be compromised to protect vulnerable individuals from addiction.  

(Editor's note: A spokesman for PROP denies the organization approached the CDC with the goal of getting the agency to draft opioid prescribing guidelines. "We did not ask CDC to do this. I am pleased that they're doing it, but I was actually pleasantly surprised. This was not something PROP asked CDC to do," he said.)

Anne Fuqua has primary generalized dystonia.  She enjoys volunteering with animal rescue and youth programs in her community.  

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.

A Pained Life: When Support Hurts

By Carol Levy, Columnist

Last week there was a meeting of my local trigeminal neuralgia support group. I like the people and want to see them, especially because we meet only 6 times a year, including one lovely summer picnic at a member's home.

It takes me an hour by train to get to the meeting. Lately, I find myself using that as an excuse not to go.

The truth is I don't want to go because of an issue that seems to haunt most support groups: the people who have gotten better or cured, leave. So we never hear the stories of success.

When my pain was bad I needed to hear those stories. Now that my pain is better, I do not want to listen to the reminder of what once was.

I had a spontaneous remission of a large part of my pain, the part most typical of trigeminal neuralgia: touch induced and spontaneous pain (and in my case constant too). I still remain with eye movement and eye usage pain, which are very uncommon with trigeminal neuralgia.

I have become an outsider to the group in the sense that I "only" have the eye pain -- yet I remain an insider because it is still trigeminal neuralgia.

I think about what I would do if I no longer had any pain.  Would I continue to be a part of the group? Would I want to be somewhere, when the only point would be to be reminded of how bad my pain was?

I think of people who lose a lot of weight. You read two kinds of stories: “I threw away all my plus sized clothes so I will not be reminded or tempted to go back to my former size.”

Or the antithesis: “I keep all my large sized clothes as a reminder so I won't go back to those days when I was so unhappy and physically miserable.”

Of course pain is different. Once it is gone, it's gone.  And when it's gone I want it to be completely, totally done, gone, and finished. Attending the support group becomes only a reminder of how devastating and debilitating the pain was.

The eye pain keeps me disabled, but the ending of the other parts of the pain has made my life more manageable.

I no longer fear the slightest touch to my face, even a wisp of hair, much less a raindrop or something touching the affected area of my face. To listen to members of the support group describing the pain they get from the slightest of touch is to take me back to a very dark and torturous place, a place I do not want to go.

It's a conundrum.

Support is so very important, not only to be there for one another, but to be with those who truly understand, who have been in my shoes and I in theirs.

The sharing of hope, to say to the group, “A major part of my pain is gone. It can happen”.  The proof that hope is not just a fairy tale matters. A lot.

But, as much as I hate to admit it and I feel very guilty about it -- I am still too selfish and fearful to be the one to carry the message.

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.

High Use of Opioids by Older Adults with COPD

By Pat Anson, Editor

Canadian researchers have found significantly high rates of opioid use among older adults with chronic obstructive pulmonary disease (COPD), according to a large study published in the British Journal of Clinical Pharmacology. Over half of the patients received a new opioid prescription after their COPD diagnosis.

"The new use of opioids was remarkably high among adults with COPD living in the community," said Nicholas Vozoris, MD, a respirologist at St. Michael's Hospital in Toronto. "The amount of opioid use is concerning given this is an older population, and older adults are more sensitive to narcotic side effects."

The study is based on records for more than 120,000 adults in Ontario age 66 and older with COPD, a progressive lung disease that makes it harder to breathe. COPD causes coughing, wheezing, shortness of breath, chest tightness and other symptoms. Most people who have COPD smoke or used to smoke, according to the National Institutes of Health.

Between 2003 and 2012, 70 per cent of the COPD patients who lived in their own home were given a new opioid prescription, while about 55% of those living in long-term care facilities received a new opioid prescription. Many were given multiple opioid prescriptions, early refills, and prescriptions that lasted more than 30 days.

Opioids might be prescribed more frequently among older adults with COPD to treat chronic muscle pain, breathlessness and insomnia.

"Sometimes patients are looking for what they think are quick fixes to chronic pain and chronic breathing problems," said Vozoris. "And physicians sometimes believe that narcotics may be a quick fix to COPD symptoms."

Common side effects of opioids in older adults include falls and fractures, confusion, memory impairment, fatigue, constipation, nausea, vomiting and abdominal pain. Vozoris says opioids may also negatively affect lung health by reducing breathing rates and volume, which can result in decreased blood oxygen levels and higher carbon dioxide levels.

"This is a population that has chronic lung disease, and this drug class may also adversely affect breathing and lung health in people who already have chronically compromised lungs," he said.

Most of the opioid prescriptions were written by family physicians, usually for pain medications that combine an opioid with acetaminophen.

"Patients and prescribers should reflect on the way narcotics are being used in this older and respiratory-vulnerable population," said Dr. Vozoris. "They should be more careful about when narcotics are used and how they're being used."

A study published in Clinical Interventions in Aging warned about the risk of “polypharmacy” in older adults, who often take multiple medications written by different providers.

“The elderly population is especially challenging when one has to consider all of the pharmacodynamic changes that occur with normal aging. The side effect profile of opiates is similar for all age groups; however the elderly population is at a greater risk for these side effects given their comorbidities and high incidence of polypharmacy. Using opiates appropriately and at the most efficacious dosage for the severity and type of pain becomes crucial in the elderly,” the study said.

Drug Shows Promise for Treating Psoriatic Arthritis

By Pat Anson, Editor

An injectable drug used to treat plaque psoriasis may also be effective in treating psoriatic arthritis, according to new research published in the New England Journal of Medicine.

Secukinumab – which is sold by Novartis under the brand name Cosentyx – helped reduce swollen joints in a double-blind Phase III study involving over 600 patients with psoriatic arthritis. Treatment with Cosentyx resulted in rapid and significant improvements in about half of the patients compared to a placebo.

The study was neither large enough or long enough to evaluate side effects associated with long-term use of Cosentyx.

Psoriatic arthritis is a form of arthritis that affects about a third of people who have psoriasis — a condition that features red skin lesions. Joint pain, stiffness and swelling are the main symptoms of psoriatic arthritis, which can affect any part of the body, including the fingertips and spine.  

No cure for psoriatic arthritis exists, so the focus is on controlling symptoms and preventing further damage to joints.

Cosentyx was approved in Europe early this year as a first-line treatment for moderate-to-severe plaque psoriasis. The drug is also approved in the U.S. as a treatment for plaque psoriasis in adult patients who are candidates for systemic therapy or phototherapy (light therapy).

Novartis has applied for Cosentyx to be used as a treatment for psoriatic arthritis and ankylosing spondylitis.

Psoriatic arthritis can develop at any time, but it most commonly appears between the ages of 30 and 50, according to the National Psoriasis Foundation. Genes, the immune system and environmental factors all appear to play a role in the onset of the disease. About 10 percent of people inherit one or more of the genes that could eventually lead to psoriasis, but only 2 to 3 percent actually develop the disease.

The Link Between Empathy and Pain

Pat Anson, Editor

The Merriam-Webster dictionary defines the word empathy as “understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another.”

Or as former President Bill Clinton famously said, “I feel your pain.”

But new research suggests empathy may be a lot more complicated than we think – at least when it comes to feeling the pain of others.

A team of European researchers has found evidence that empathy may be strongly influenced by neurotransmitters in the brain -- and is not just a form of emotional or social bonding.

Their findings suggest that empathy is dependent – not on feeling the pain of others --- but on experiencing pain yourself.

“Empathy is of major importance for everyday social interaction. Recent neuroscientific models suggest that pain empathy relies on the activation of brain areas that are also engaged during the first-hand experience of pain,” wrote psychologist Clauss Lamm of the University of Vienna, lead author of a study published in Proceedings of the National Academy of Sciences.

Lamm and his colleagues recruited 100 participants for an experimental trick with a placebo. They divided the volunteers into two groups and gave one group a pill they thought was a painkiller but was actually a placebo. The second group received no pill at all.

Both groups were given a small electric shock and asked to rate the degree of pain they felt -- and the degree of pain they saw in others who were also shocked.

The group that received the placebo not only reported less pain than the control group, but they also felt there was less pain experienced by others. That placebo-empathy effect was confirmed by MRI’s – which found there was less activity in brain areas of the placebo group that felt less pain and empathy for others.

Researchers tested the placebo-empathy effect in a second study in which they used the drug naltrexone to block opioid receptors in some of the volunteers. Those given naltrexone reported feeling more pain when shocked and felt that others felt more pain as well.

"This result strongly suggests an involvement of the opioid system in placebo-empathy, which is an important step to a more mechanistic understanding of empathy,” said Lamm.

"The present results show that empathy is strongly and directly grounded in our own experiences – even in their bodily and neural underpinnings. This might be one reason why feelings of others can affect us so immediately – as we literally feel these feelings as if we were to experience them ourselves, at least partially. On the other hand, these findings also explain why empathy can go wrong – as we judge the feelings of others based on our own perspective,” explains Lamm.

Lamm and his colleagues are now working on a follow-up study in which they are investigating the effects of opioids on empathy.

The Risks of Non-Opioid Pain Medications

By Emily Ullrich, Columnist

As a chronic pain patient for some years now, I have realized the necessity of self-advocacy and have made it a point to become extremely well-educated in regard to patient choices in pain treatment. I also pay very close attention to the constant barrage of anti-opioid propaganda that consumers are exposed to -- an agenda being pushed by the DEA, CDC, and powerful special interest groups.

As a patient advocate and delegate to the Power of Pain Foundation, I am also more aware of the increasing limitations and access to opioid pain treatment that patients are being subjected to. As pain patients, we must be aware of our options, and demand explanations from the medical community and government as to the real reasons why we are being denied or severely limited access to opioids.

The scariest part of this situation is that non-opioid pain medications are now being thrust upon us as one of the “preferred” treatments for chronic pain in the CDC’s draft guidelines for opioid prescribers.

First, it is important to consider the following facts:

Unless a doctor is board certified in pain treatment, he or she receives little to no education in pain management under the current standard medical curriculum. Yet pain is the number one reason people go to a doctor or hospital.

This contradiction causes an enormous gap in knowledge and understanding when it comes to pain, and leads to a tremendous level of under-treated or untreated pain. Many well-intentioned, but uninformed doctors are intimidated by the prevailing climate of opioid hysteria and feel pressured to treat their patients' pain with newer, non-opioid therapies. Many of these medications are being prescribed to patients in an “off-label” fashion.

Two of the most commonly prescribed non-opioid “pain medications” are Lyrica (pregabalin) and Neurontin (gabapentin), both of which were initially approved by the FDA as anti-seizure drugs. The dangers of these medications are too often minimized by doctors, government agencies, and the media -- and to some degree remain unknown (particularly in the long-term).

One thing that has recently been unearthed is that these medicines prevent the formation of new brain synapses. This is not a minor side effect. It can lead to short and long-term memory loss, as well as Alzheimer's disease, among other things.

It can also mean that the brain becomes incapable of neuroplacticity. According to the Huntington Outreach Project at Stanford University, our brains rely on neuroplasticity to “compensate for injury and adjust their activity in response to new situations or changes in their environment.” In lay terms, these drugs cause brain damage.

In addition to the under-reported peril involved in the use of these drugs (and many others that are being used in place of opioids), they also have long and worrisome side effects. The potential side effects of both Lyrica and Neurontin are far too many to list, but include vomiting of blood, pancreatitis, hearing loss, non-Hodgkin's lymphoma, “oncologic” (cancerous) potential, heart disease, heart attack, acute kidney failure, and “life-threatening angioedema with respiratory compromise.”

Compare these potential side effects to those of opioids. When used appropriately, the major side effects of opioid pain medication are constipation and dependence -- both of which also happen to be listed as side effects of Lyrica and Neurontin.

When one sees that the most frequently prescribed non-opioid “pain medications” can cause cancer, heart attack, kidney failure, etc., we must question the motives behind this movement to eliminate or greatly reduce the use of opioids. When used properly, opioids have a proven track record of pain relief. So, why are we being told they are so dangerous?

One loathes the idea that a doctor might have ulterior motives when prescribing or that the FDA, DEA, and CDC may have less than ethical intentions. However, it seems necessary to consider the possibility that drug companies may further sicken patients with their “treatments” to ensure lifetime consumers who are forced to buy additional medications to treat the conditions caused by their very own products.

You can easily look up the financial contributions made by “Big Pharma” to your doctors, politicians, special interest groups, and other influential voices in the medical community by visiting ProPublica’s “Dollars for Docs,” Medicare’s Open Payments Database, and OpenSecrets.org.

Pfizer for example – the maker of Lyrica and Neurontin – was the top contributor in the health care industry to candidates and political parties during the 2014 election cycle – donating over $1,534,000 to both Democrats and Republicans alike. The top two recipients were Sen. Cory Booker (D-NJ) and Senate majority leader Mitch McConell (R-KY).

We must ask these difficult questions and have these taboo conversations for our own good. It is unfortunate that our society has come to this, but if we continue not to question, we will continue to be marginalized. Pain patients suffer enough. We need solutions, not restrictions.

I, for one, will continue to use alternative therapies and choose responsible opioid therapy over newer and more dangerous medications, as long as the law allows. I will continue to push for answers and I hope readers will be incentivized to join me.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS/RSD), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis, chronic gastritis, Interstitial Cystitis, Migraines, Fibromyalgia, Osteoarthritis, Periodic Limb Movement Disorder, Restless Leg Syndrome, Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and Irritable Bowel Syndrome.

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the Power of Pain Foundation, as she is able.

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 the CDC Opioid Guidelines

(Editor's Note: This survey is now closed. To see our stories about the survey results, click here and here. For a complete look at all of the survey result, visit the "CDC Survey Results" tab at the top of this page or click here.)

By Pat Anson, Editor

As we’ve been reporting over the last several days, chronic pain patients had little role or voice in the development of opioid prescribing guidelines recently announced by the Centers for Disease Control and Prevention (CDC).

The guidelines for primary care physicians are aimed at reducing rates of addiction and overdose, but they are likely to lead to further restrictions on the prescribing of opioid pain medication for both acute and chronic pain.

The CDC recommends “non-pharmacological therapy” and other types of pain relievers as preferred treatments for chronic non-cancer pain. Smaller doses and quantities of opioids are recommended for patients who continue using the drugs.  A complete list of the guidelines can be found here.

While the CDC is no longer accepting public comment on the guidelines, your opinion matters to us and it’s not too late to let your feelings be known.

Pain News Network and the Power of Pain Foundation are joining forces to conduct a survey of pain patients to see what they think of the CDC’s guidelines.

To take our quick survey, click here.

“As pain patients, we already have major roadblocks in our health care system to get access to proper and timely treatment. I predict these new CDC guidelines will have a devastating impact on our pain care,” says Barby Ingle, founder and president of the Power of Pain Foundation. “Many more people will suffer from arbitrary guidelines set by a panel of people who are not in the everyday trenches with pain patients. These guidelines force the same care for all. We are not all the same.

“Taking our survey about the CDC's opioid prescribing guidelines gives patients a voice in this process. Raise your voice and be heard, something that was not done when the guidelines were drafted. Share your story, share your experiences and share what it’s like to live in the pain community as the expert of your pain.”

Some of the questions we’re asking include whether you think opioids are overprescribed;  what effect the guidelines will have on rates of addiction and overdoses;  whether pain patients should be required to take urine drug tests; and if the guidelines discriminate against pain sufferers.

In addition to taking the survey, Ingle says it’s time for pain sufferers to step up and be better advocates for themselves.

“We must participate in studies and surveys on this topic, and write letters to those trying to dictate our lives and what appropriate care should be,” she says. “The only way to ensure access to proper and timely care is to keep the relationship between the patient and their providers."

The CDC is planning to release the prescribing guidelines in January.  Although voluntary, some experts predict the guidelines could quickly be adopted by state health departments and licensing boards, making them “standards of practice” for physicians.

High Dose Patients Worried by CDC Opioid Guidelines

By Pat Anson, Editor

The draft guidelines for opioid prescribing released by the Centers for Disease Control and Prevention (CDC) this month have many chronic pain patients worried – especially those who are taking high doses of opioid pain medication.

The CDC guidelines state that physicians “should avoid” increasing opioid doses over a certain level -- 90 milligrams MEQ (morphine equivalent) a day. And if that dose isn’t high enough to relieve pain? Instead of increasing it, the CDC recommends that doctors “should consider working with patients to taper and discontinue opioids.”

“I am totally freaked out about this new limit,” says Gary Snook, a 62-year old Montana man who has Arachnoiditis, a chronic and painful inflammation of the spinal cord. “The new limit would leave me no option but suicide or becoming a felon.”

Snook needs high doses of opioids not only because of the damage done to his spine by a series of epidural injections for back pain – but because of a genetic condition that makes opioids less potent in his system. Snook takes extremely high daily doses of oxycodone – averaging the equivalent of 540 milligrams of morphine – or six times more than what the CDC recommends.

“I never feel high, still drive. The only side effect I notice from the meds is pain relief,” says Snook, who used to be on even higher doses.

He believes the CDC guidelines would amount to a death sentence for him.

gary snook

“I cannot sleep at night and my pain has been elevated from the stress of all this. I used to think doctors were limiting medication to force us into procedures which are not an option for me. Now I believe this is a well-planned extermination of a disadvantaged segment of society,” Snook says.

“The CDC draft and activity is disturbing.  Their guidelines are good, but their 90mg ceiling is a problem,” says Forest Tennant, MD, a pain management specialist who treats Snook. “The word ‘avoid’ in traditional pharmaceutical prescribing usually means don't exceed the dose unless absolutely necessary.  I would like to see the 90mg dosage be preceded or followed with the statement ‘whenever possible.’

"The major issue here is whether legacy patients -- those given high opioid dosages in the past when there were no alternatives -- can continue.  New patients seldom need to go over 90mg as we now have non-opioid neuro-inflammatory and neuro-hormonal therapies."

If the CDC guidelines are adopted, Tennant wonders if other doctors will continue to treat high dose patients like Snook.  Providers will still be able to prescribe high doses “off label” – but many physicians already feel pressured by insurers and the DEA to prescribe lower doses.

“I hear almost on a daily basis of patients being forced to reduce their opioid dose despite being stable and functional for years,” says Lynn Webster, MD, past president of the American Academy of Pain Medicine.

“The suggested limit on opioid dose is without evidence. There are millions of people who have been on much more than 90 mg MEQ for years if not decades who are functional because of their dose. This recommendation is going to cause enormous suffering.”

“One appalling aspect of CDC involvement is simply the fact that this is an agency that deals with communicable diseases -- not intractable pain,” said Tennant. “Gosh knows which ‘experts’ they consulted to arbitrarily pick 90mg.”

As Pain News Network has reported, Physicians for Responsible Opioid Prescribing (PROP) – an advocacy group that is trying to reduce the prescribing of opioids – apparently played a significant role behind the scenes in developing the CDC’s guidelines.

At least five PROP board members, including President Jane Ballantyne, MD, Vice-President Gary Franklin, MD, and PROP founder Andrew Kolodny, MD, are on CDC panels that helped develop the guidelines. Kolodny is chief medical officer for Phoenix House, a non-profit that offers addiction treatment programs around the country.

The CDC’s “Core Expert Group” -- the panel that drafted the guidelines -- is dominated by researchers and government regulators who have little experience in treating pain patients.

“The last thing they want is for true experts to ever testify,” says Tennant.  

“The CDC has been manipulated by payers who want to reduce their costs of opioids and by individuals who just don't understand that there are people who find opioids lifesaving,” adds Webster.

Pain News Network has also reported that only two patient advocacy groups were among the 50 organizations invited to an online “webinar” -- the first and only time the CDC publicly disclosed its prescribing guidelines and sought public input. Other organizations that were invited were physicians’ groups, insurance companies, pharmacists and several non-profits focused on fighting addiction and drug abuse.

The CDC, which is no longer accepting public comment on the guidelines, plans to finalize them by January 2016 – leaving high dose patients like Gary Snook wondering about their futures.

“This is the smallest dose I have been on for a decade and it is a struggle. I have no side effects from these high doses and am always alert and coherent. I never share my medication as I would never make it until the end of the month,” he said. "I am suicidal on lower doses, but can have a life at these levels but have no hobbies and can't work although I would love too."

Tai Chi Relieves Chronic Pain of Arthritis

By Pat Anson, Editor

The ancient Chinese exercise Tai Chi improves pain and stiffness in older adults suffering from osteoarthritis, according to a study published in the British Journal of Sports Medicine. Researchers also found that Tai Chi improved the physical condition of older patients with breast cancer, heart failure and chronic obstructive pulmonary disease (COPD).

Tai Chi consists of slow, choreographed movements that aim to boost muscle power, balance, and posture. It also includes mindfulness, relaxation, and breath control.

In a meta-analysis (a study of studies), researchers looked at 34 studies involving nearly 1,600 participants to see how effective Tai Chi was in four chronic long term conditions that are common in older adults – cancer, heart failure, COPD and osteoarthritis.

Osteoarthritis is a progressive joint disorder which leads to thinning of cartilage and joint damage in the knees, hips, fingers and spine.

Participants ranged in age from their mid-50s to early 70s. On average, they took part in two to three Tai Chi sessions a week for 12 weeks, with most classes lasting an hour.

Researchers found that Tai Chi was associated with improvements in physical capacity and muscle strength in most or all four conditions, including a six minute walking test, bending and stretching at the knees, and the time it took to get from a sitting to a standing position.

Breathlessness was reduced in patients with COPD, and osteoarthritis patients showed improvement in the symptoms of pain and stiffness.

“The results demonstrated a favorable effect or tendency of Tai Chi to improve physical performance and showed that this type of exercise could be performed by individuals with different chronic conditions,” researchers said.

A previous study of Tai Chi have found that it significantly reduces pain in as little as 8 weeks in patients with fibromyalgia, as well as sustained benefits in sleep, fatigue, anxiety, physical function and overall well-being. That study is published online in Arthritis Research & Therapy.

Fibromyalgia is a complex disorder characterized by chronic pain, fatigue, difficulty sleeping and mood swings.