CDC’s Prescribing Guidelines and the ‘Cone of Silence’

By Stephen Ziegler, PhD, Guest Columnist

A recent effort by the Centers for Disease Control and Prevention (CDC) to reduce prescription drug overdose may actually lead to increases in pain, injury, and death from opioids by over-relying on the use of dosage levels in prescribing policies.  

Last month, in a webinar that reminded me of Get Smart’s "Cone of Silence", the CDC introduced draft guidelines for the prescribing of opioid pain medication.

The actual guidelines themselves were not made available in advance, nor do they appear on the CDC website.

However, attendees fortunate enough to successfully log into the webinar could hear the guidelines read to them by the CDC (and perhaps see the guidelines if the technology was working).

While the secrecy associated with the release of the draft guidelines raises several concerns, so do the guidelines themselves, especially the guideline relating to dosage which states: “Providers should implement additional precautions when increasing dosage to 50 or greater milligrams per day in morphine equivalents and should avoid increasing dosages to 90 or greater milligrams per day in morphine equivalents.”

Although dosage is a legitimate concern, there are a myriad of problems associated with the adoption of arbitrary dosage thresholds in prescribing guidelines. In fact, the CDC is not alone; many states throughout the U.S. continue to adopt a variety of dosage thresholds that, once reached, will trigger specific actions or recommendations.

And while those subsequent recommendations or actions may be consistent with good medical practice, the use of arbitrary dosage triggers are problematic because:  1) there may be good reasons for not waiting until a daily dose is reached before taking certain actions; 2) there is no direct cause and effect relationship between dosage and overdose in legitimate pain treatment; 3) converting to morphine equivalency is an error-prone process that can lead to over-dosing, under-dosing, and even under-treated pain; 4) arbitrary dosage thresholds fail to consider individual patient characteristics; 5) many prescribers may consider the threshold a ceiling and will seek to avoid approaching it to avoid regulatory scrutiny and thereby under-medicate and under-treat pain; and, 6) poly-pharmacy and poly-substance abuse, not dosage standing alone, plays a far more significant role in unintentional overdose.

In the October issue of Pain Medicine, I discuss these and other concerns regarding the proliferation of dosage thresholds across the United States and their potential to increase pain and opioid-related mortality.

Prescription drug overdose is a local and national problem, but so too is the under-treatment of pain. While the CDC has paid a lot of attention to preventing prescription drug overdose, they also need to start paying attention to the other epidemic: the 100 million Americans who are impacted by chronic, long-term pain. What we need are balanced approaches, and any prescribing guideline that is veiled in secrecy, or fails to consider the unintended consequences on the treatment of pain, has no place in clinical practice or public policy.

Stephen J. Ziegler, PhD, is an Associate Professor of Public Policy at Indiana University-Purdue University in Fort Wayne, Indiana. Dr. Ziegler conducts research, provides continuing medical education, and consults on the topics of opioid risk management and the impact of drug regulation and enforcement on the treatment of pain. He has been published in several peer reviewed journals and serves as a reviewer for several journals such as the Journal of Opioid Management, Pain Medicine, Cancer, and the Journal of Medical Ethics.

Prior to obtaining his law degree, Dr. Ziegler worked as a police detective and as a Task Force Officer for the U.S. Drug Enforcement Administration.

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.

Orthopedic Surgeons Advised to Limit Opioids

By Pat Anson, Editor

The American Academy of Orthopaedic Surgeons (AAOS) has joined the chorus of physician organizations calling for greater efforts to address the “growing opioid epidemic” in the U.S.

The AAOS Board of Directors has adopted an Information Statement on Opioid Use, Misuse and Abuse in Orthopaedic Practice that calls for limits on opioid prescribing and improved efforts to educate physicians, caregivers and patients about opioid misuse.

Orthopaedic surgeons are the third highest prescribers of opioids behind medical doctors and dentists, according to the AAOS.

"A culture change has created the current opioid epidemic, and only a culture change -- led by physicians unafraid to limit opioid prescriptions -- will solve the epidemic," said David Ring, MD, a member of the AAOS Patient Safety Committee. "It's up to us to treat pain with less dependence on opioids. This information statement outlines the steps and strategies to help get us there."

Among the recommendations:

Standardized opioid prescribing policies that set ranges for acceptable amounts and duration of opioids for various surgical and non-surgical conditions and procedures. Opioids should not be prescribed for pre-operative and non-surgical patients.

Patients at greater risk for opioid use, such as those with symptoms of depression and poor coping strategies, should be identified and treated for these conditions prior to elective surgery.  

Surgeons should practice empathetic and effective communication. Patients are more comfortable and use fewer opioids when they know their doctor cares about them.

Partnerships need to be established among hospitals, employers, patient groups, state medical and pharmacy boards, law enforcement agencies, pharmacy benefit managers, insurers and others to combat opioid abuse.

Improved opioid tracking. A single nationwide tracking system would allow surgeons and pharmacists to see all prescriptions filled by a given patient.  

Physicians should be stricter about prescribing opioids and monitor their effectiveness..

Health care providers must recognize that patients with terminal illnesses and “other appropriate conditions” should have access to opioids.

The recommendations also call for an “opioid culture change.”

“Making opioids the focus of pain management has created many unintended consequences that often put both patients and their families at increased risk of addiction and death. Peace of mind is the strongest pain reliever. Studies have found that opioids are associated with more pain and lower satisfaction with pain relief,” the AAOS guidelines state.

The AAOS represents over 40,000 physicians and health care providers in osteopathic and orthepaedic medicine. It is one of 27 physician organizations that have joined the American Medical Association’s Task Force to Reduce Opioid Abuse.

Opioid Abuse Down; Deaths Up in U.S.

By Pat Anson, Editor

A new study has found conflicting trends in the abuse and misuse of opioid pain medication in the U.S.

From 2003 to 2013, the “nonmedical” use of prescription opioids decreased in American adults from 5.4 percent to 4.9 percent. At the same time, however, rates of opioid abuse and opioid related deaths increased.

Drug overdose deaths associated with prescription opioids rose sharply during those ten years, from 4.5 deaths per 100,000 people to 7.8 deaths per 100,000 in 2013.

The study, which was published in JAMA, the official journal of the American Medical Association, is certain to fuel further debate about opioid pain medication and whether further efforts are needed to limit its prescribing.

"We found a significant decrease in the percentage of nonmedical use of prescription opioids, as well as significant increases in the prevalence of prescription opioid use disorders, high-frequency use, and related mortality,” the study says.

“Furthermore, the increases identified in this study occurred in the context of increasing heroin use and heroin-related overdose deaths in the United States, supporting a need to address nonmedical use of prescription opioid and heroin abuse in a coordinated and comprehensive manner."

“The most disturbing statistic is the increase in mortality per 100,000,” said Lynn Webster, MD, past president of the American Academy of Pain Medicine. “Unfortunately the data doesn't help sort out if the deaths are occurring in patients or non-patients.  It is important to know because the required interventions will differ depending on the reasons for overdose within both groups.  

“For example the definition of ‘nonmedical use’ is defined as use without a prescription or with a prescription for how the opioid makes the individual ‘feel’.  Of course an opioid is supposed to make people feel better.  Is that nonmedical use or is it therapeutic use defined as nonmedical use?”

It didn’t take long for critics of opioid prescribing to weigh in. JAMA also published an editorial that immediately pointed a finger at patients, not addicts.

“Most opioids misused by patients originate from prescription medication. Most patients who overdose on prescription opioids are taking their medications differently than prescribed or are using opioids prescribed to someone else. These 2 main types of nonmedical opioid use represent a major cause of morbidity and mortality,” wrote Lewis Nelson, MD; David Juurlink, MD, and Jeanmarie Perrone, MD.

"The chronic, relapsing nature of opioid addiction means most patients are never 'cured,' and the best outcome is long-term recovery. The lifelong implications of this disease far outweigh the limited benefits of opioids in the treatment of chronic pain, and in many cases the risks inherent in the treatment of acute pain with opioids.”

“Oh my goodness, this is terrible,” said Janice Reynolds a chronic pain sufferer and patient activist. She said the editorial was full of “myths and “lies” that discount the use of opioids to relieve pain.

“There is, despite their claims, much research which supports its use,” Reynolds said in an email.

Coincidentally, all three authors of the editorial – Nelson, Juurlink and Perrone – are members of panels developing opioid prescribing guidelines for the Centers for Disease Control and Prevention (CDC). Currently those 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 for acute or chronic pain.  A complete list of the guidelines can be found here.

Nelson is a member of the CDC's "Core Expert Group," a panel that advised the CDC on initial development of the opioid guidelines.

Juurlink, who is considered a “stakeholder” by the CDC, is a board member of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group that seeks to reduce the overprescribing of opioids.

Perrone has an even more important role with the CDC, serving on a three member peer review panel that will help finalize the opioid guidelines. Another member of the peer review committee, David Tauben, MD, is also a PROP board member.

The CDC has informed Pain News Network that the peer reviewers were asked to disclose any conflicts of interest, including any financial, professional or other interest relevant to their work -- and nothing was found to warrant removal from the peer review panel.

"PROP (Physicians for Responsible Opioid Prescribing) is considered a professional membership organization and wasn’t considered a conflict of interest unless  there was a financial and promotional relationship identified," said Shelly Diaz, a CDC spokesperson.

"The Peer Reviewers  disclosed no financial interests or other  promotional relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters. When reviewers  reported interests related to intellectual property, other (travel, gifts), public statements and positions, or additional information provided, their statements were carefully reviewed by the CDC guideline development staff to determine if the interests would have an effect on the suggestions."

Study: Long-Term Opioid Use Often Ineffective

By Pat Anson, Editor

Less than half the people on long-term opioid therapy achieve relief from chronic pain, according to a new survey that found opioids even less effective in younger women. However, most respondents still considered opioids to be very or extremely helpful.

Over two thousand women and men enrolled in group health plans in Washington State and northern California were surveyed about their long-term use of opioids. The study, published in the Journal of Women’s Health, is believed to be the first to look at differences in the effectiveness of opioids between the sexes.    

Only about 20 percent of the patients on long term opioid therapy were classified as having a favorable “global pain status” – which is a measure of overall pain and function. Nearly 28% had an intermediate status and over 52% had an unfavorable global pain status.

Women between the ages of 21 and 44 were much more likely than men in the same age group to have an unfavorable status (66% vs. 40%). That finding is significant because younger women face unique risks from opioid use, such as reduced fertility and risks to a developing fetus during pregnancy.

"Given the high rates of chronic opioid use in women along with evidence of poor relief from pain and concerning risks, particularly in reproductive-aged women, we need more effective and safer options for managing pain in this population," Susan Kornstein, MD, Editor-in-Chief of the Journal of Women's Health and  Executive Director of the Virginia Commonwealth University Institute for Women's Health.

Over half the women and men with “unfavorable” pain status were depressed, unemployed, laid off or not working for health reasons.

“Our observational data indicate that for typical COT (chronic opioid therapy) patients in community practice the probability of experiencing good pain control and favorable levels of functioning is relatively low,” the study found. “However, regardless of global pain status, in every age–sex group, the majority of patients rated opioids as very or extremely helpful in relieving pain.”

Researchers admitted they could not assess whether pain and function had improved or deteriorated from the time patients began using opioids. They also could not explain why opioids appear to be more effective in men than women.

“Women tend to have greater pain severity, and are more likely to be prescribed opioids to treat their pain.  However, opioids work less well in women,” said Beth Darnall, PhD, a pain psychologist, clinical associate professor at Stanford University and author of Less Pain, Fewer Pills.

“Rather than stopping medications that are not working well, often the opioid prescriptions are continued and the dose increased—this can set women up to have more side effects and even greater pain.”

Darnall, who has studied the medical and psychological risks of long-term opioid use by women, says safer alternatives to opioids need to be found.

“For many years there was a common perception that opioids were a ‘solution’ to pain. We must continue to look beyond opioids to comprehensive treatments that have low risks for patients. Such treatments may include acupuncture, pain psychology, self-management, physical therapy, and occupational therapy.  A primary problem is lack of access to these low-risk, effective treatments.”

CDC Should Consider Marijuana as Alternative to Opioids

By Ellen Lenox Smith, Columnist

Presently in our country, those that are successfully using opioids for pain relief are feeling dirty and lost -- largely due to fears about addiction and  overdoses. Pain patients often have to cope with physicians who are reluctant to prescribe opioids and pharmacies that are sometimes unwilling to fill their prescriptions.

The Centers for Disease Prevention and Control (CDC) is considering new guidelines that would encourage doctors to shift even further away from prescribing opioids, leaving the patient with little effective medication to turn to.

Why is the CDC not even considering the use of medical marijuana to help these people in need?

The Boston Herald recently reported that hundreds of opioid addicts are being treated successfully in Massachusetts with medical marijuana.

“We have a statewide epidemic of opioid deaths,” said Dr. Gary Witman of Canna Care Docs, which issues medical marijuana cards in seven states. “As soon as we can get people off opioids to a non-addicting substance — and medicinal marijuana is non addicting — I think it would dramatically impact the amount of opioid deaths.”

Witman is treating about 80 patients at a Canna Care clinic who are addicted to opioids, muscle relaxants or anti-anxiety medications. After enrolling them in a one-month tapering program and treating them with cannabis, Witman says more than 75 percent of the patients have stopped taking the harder drugs. Medical marijuana gave them relief from pain and anxiety — and far more safely than opioids.

Patients across the country are also learning they can use cannabis for pain relief, decreasing or even eliminating their use of opioids.  Marijuana works far better than other substitutes since it is not synthetic and does not cause organ damage or deaths like opioids can in some circumstances.

Medical marijuana works naturally on what is known as the “endocannabinoid system,” binding to neurological receptors in the brain that control appetite, pain sensation, mood and memory.

Here in Rhode Island, my husband and I have witnessed the amazing transition of pain patients on opioids that chose to transition to medical marijuana.  Most that turn to cannabis do so to eliminate the side effects of opioids and concerns about their long term use. They still achieve pain relief but know they are gaining that relief in a safer manner -- no organ damage, no teeth getting destroyed, no concerns of addiction and no deaths.

Marijuana may still be illegal at the federal level, but it is legal in 23 states and the District of Columbia, and millions of people are discovering its therapeutic benefits. The CDC should consider adding medical marijuana to the list of “non-opioid” therapies in its guidelines.

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

For more information about medical marijuana, visit their website.

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

Medical marijuana is legal in 23 U.S. states and the District of Columbia, but is still technically illegal under federal law. Even in states where it is legal, doctors may frown upon marijuana and drop patients from their practice for using it.

FDA Won’t Change Warning Label for Steroid Injections

By Pat Anson, Editor

The U.S. Food and Drug Administration (FDA) has decided not to toughen its warning label on the use of epidural steroid injections – despite the risk of serious and sometimes fatal neurological problems caused by the procedure. The injections are commonly used to treat neck and back pain.

Last year, the FDA required all injectable glucocorticoid products to carry labels warning that “serious neurologic events, some resulting in death, have been reported with epidural injection” and that the “safety and effectiveness of epidural administration of corticosteroids have not been established.”

Since then, the agency has been lobbied by interventional pain physicians who perform the injections to weaken the warning label; while patient activists wanted even tougher language used. The FDA will do neither.

“The FDA has decided not to modify the warning about serious neurologic events. Without question, serious (sometimes fatal) neurologic events occur with epidural glucocorticoid injection. Given the large number of these procedures performed, these events appear to be rare; however, a population-based study would be needed to establish a valid estimate of their frequency,” wrote several FDA scientists in an article published in the New England Journal of Medicine.

The use of steroids in epidural injections (ESI’s) has never been approved by the FDA, but millions of the procedures are performed every year by doctors who use steroids “off label” – which the agency considers “part of the practice of medicine and not regulated by FDA.” 

As Pain News Network has reported, ESI’s can be a lucrative procedure for physicians, depending on insurance payments and where the epidurals are performed. Payments can vary widely, from a few hundred dollars to over $2,000 per injection.

Critics say the injections are risky, overused, and often a waste of money. While side effects appear to be rare, they can be very serious, including loss of vision, stroke, paralysis and a disabling condition known as arachnoiditis, a painful and chronic inflammation of the spinal cord.

“What do you think would happen if the FDA were to contraindicate Depo-Medrol, the steroid that gave me adhesive arachnoiditis?” asked Gary Snook, a Montana man who developed arachnoiditis after a series of epidurals for back pain.

“In a few days we would be seeing TV commercials asking, ‘Have you received an epidural steroid injection? Do you now have burning pain in your legs? Do you now have numbness, tingling or weakness?' The phones would be ringing off the hook!’” said Snook in an email to PNN. “Because of the sheer number of injections given, even at a disability rate of 1%, every pain clinic and hospital in the country would be facing multiple lawsuits. No. The FDA had to do nothing. They had to keep a lid on this degree of medical malpractice.”

Depo-Medrol is a steroid made by Pfizer that has been banned for epidural use in Australia and New Zealand. Another steroid commonly used in ESI's, Bristol-Myers Squibb's Kenalog, does come with a warning label against epidural use, but patients are rarely told by their doctors about the risks involved.

“Sadly, in the current marketplace that packages and merchandises epidural injections for the short term address of chronic pain, (the FDA’s) decision makes it more difficult to obtain a true patient centered solution focused on the problem of preventing and treating chronic and intractable pain,” said Terri Lewis, PhD, a patient advocate. “FDA turned the keys to the asylum over to the corporations who lobbied hard to preserve their bricks and mortar investments supported by Medicare, worker's compensation, Medicaid, and private insurance.”

But the epidural injection industry didn’t get what it wanted, either. In a recent letter to the American Society of Interventional Pain Physicians, which petitioned the FDA to weaken or withdraw its warning label, FDA director Janet Woodcock said the label would not change.

“FDA has identified case reports of serious neurologic adverse events associated with all ESI approaches and all injection sites,” Woodcock wrote. “The totality of the available information provides evidence adequate to support the class safety warning.”

Woodcock also denied suggestions in the petition that an FDA advisory committee known as the "Working Group" met improperly with the Multisociety Pain Workgroup (MPW), a rival coalition of anesthesiologists, surgeons and pain management doctors, to discuss safety guidelines for ESI's.

"We do not agree with the unsupported characterizations of the Working Group, its activities, or its relationship to the MPW as asserted in your Petition," Woodock wrote.

Although 17 clinical guidelines were later issued by the Working Group, Woodock said the recommendations were for the "medical community" and were "neither binding on FDA nor endorsed by the FDA."

A federal study released earlier this year said there was little evidence that epidural steroid injections were effective in treating low back pain. The MPW called the report’s conclusions "flawed" and "absurd."

Power of Pain: What is Comorbidity?

By Barby Ingle, Columnist

It’s not unusual for pain patients to suffer from two or more chronic conditions – what is known as “comorbidity.”

First defined by Alvan Feinstein in 1970, comorbidity is “any distinct clinical entity that has co-existed or that may occur during the clinical course of a patient who has the index disease under study.” 

To put that in layman’s terms, let’s say you have Reflex Sympathetic Dystrophy (RSD) and experience other conditions that coexist with it; such as thoracic outlet syndrome, sleep disorders, depression, severe anxiety, pots, dystonia, arachnoiditis, fibromyalgia, etc.

Just because you have RSD doesn’t necessarily mean you will have any or all of these comorbidities, but they are commonly found to coexist together or in some cases develop as a secondary issue to the RSD.

Here are a few tools patients can use to help with the comorbidities that often come with chronic pain:

Sleep Disorders: To improve your sleep you can do a few things. Cut back on caffeine; stop smoking, and use biofeedback to lower your anxiety and stress. There is a great article on Pain Pathways about ways to improve your sleep.

Dysautonomia/Postural orthostatic tachycardia syndrome (POTS): This is a disorder characterized by orthostatic intolerance (OI) – which makes it hard for a person to stand up. Symptoms include altered vision, anxiety, exercise intolerance, fatigue, headache, heart palpitations (the heart races to compensate for falling blood pressure), difficulty breathing or swallowing, lightheadedness, nausea, neurocognitive deficits such as attention problems, heat sensitivity, sleep problems, sweating, and muscle weakness. 

OI affects more women than men (female-to-male ratio is at least 4:1), and usually people under the age of 35. Up to 97% of those who have chronic fatigue syndrome have been shown to have some form of OI. A good resource for more information on OI can be found at the Dysautonomia Information Network (DINET).

Dystonia:  Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and/or repetitive movements or abnormal postures. A good resource to learn about RSD (CRPS) and Dystonia is a research paper written by Mark Cooper, PhD, Department of Biology, University of Washington. 

Depression/ Anxiety: Over the last 30 years, it has become clear that RSD is not a psychiatric illness. Many people think that it is all in a patient’s head. They are right, but it is organically in our head and not a psychiatric illness. Depression does not cause RSD, but RSD can cause depression.

Situational depression and anxiety should be expected for those of us who have such a severe degree of pain that we cannot work a regular job. Many of us feel that nobody really understands what we are going through or how we could learn skills to smile through it. Anybody in the situation of facing RSD and living it day in and day out is going to be depressed.

Multiple studies have shown that people with disabilities are typically in poorer health and have less access to adequate care. They are also more prone to smoking and engage in fewer physical activities. With less access to proper and timely care for these patients, it is not surprising that their overall health would suffer.

We have to work on our healthcare system and change our access to care so that we are not focused on taking care of patients after they develop a disease. We need to teach preventative care from childhood. That way if a youth grows up and develops a chronic condition, the secondary illnesses and comorbidities may not be as bad as they are for today’s chronic pain patients.

Preventative measures such as better posture, nutrition and better access to timely care will go a long way in helping to slow the development of primary conditions and comorbidity. In the meantime, we need to encourage those with pain diseases to stay well through proper care, being active and connected to the pain community.

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.

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.