FDA Approves New Opioid Film Patch

By Pat Anson, Editor

The U.S. Food and Drug Administration has approved a new delivery system for the treatment of chronic pain – the first of its kind to use an oral film patch containing buprenorphine.

The film patch – which will be sold under the brand name Belbuca -- was jointly developed by Endo International (NASDAQ: ENDP) and BioDelivery Sciences (NASDAQ: BDSI). It’s expected to become available early next year.

image courtesy biodelivery sciences

Belbuca is designed to dissolve in the mouth, delivering buprenorphine through the inside lining of the cheek and into the bloodstream faster than conventional pills or skin patches. Buprenorphine is a weaker acting opioid that has long been used to treat both addiction and chronic pain.

“Belbuca provides a unique approach for chronic pain management, combining the proven efficacy and established safety of buprenorphine with a novel buccal film delivery system that adds convenience and flexibility," said Richard Rauck, MD, Director of Carolinas Pain Institute in Winston Salem, NC.

"For both opioid-naïve and opioid-experienced patients who require around-the-clock treatment and for whom alternative treatment options are inadequate, Belbuca offers appropriate, consistent pain relief and a low incidence of typical opioid-like side effects.”

Because the film delivers buprenorphine into the bloodstream faster than conventional methods, lower doses are needed to treat pain. Belbuca will be available in seven different dosage strengths, allowing for flexible dosing every 12 hours.

FDA approval of Belbuca was based on two Phase III studies involving over 1,500 patients with moderate to severe chronic low back pain. Patients who used Belbuca reported “statistically significant improvement” in pain relief over a 12-week period, compared to a placebo. The most common adverse reactions to Belbuca were nausea, constipation, headache, vomiting, fatigue, dizziness, somnolence, diarrhea, dry mouth, and upper respiratory tract infection.

Buprenorphine is a Schedule III controlled substance, which means it has a lower abuse potential than many other opioids. It may also be easier to get a prescription for than Schedule II drugs such as hydrocodone.

“If you’re going to use an opioid, I think based on its classification, Belbuca really does offer some significant benefits,” said Dr. Mark Sirgo, President and CEO of BioDeliversy Sciences.

“There are two areas this product will be used for. Those that are stepping up from a Motrin-like drug, a non-steroidal anti-inflammatory, that no longer controls their chronic pain. Those are good candidates for Belbuca. And in those that may already be on a Schedule II product such as Vicodon, one of the oxycodone products or morphine products, where a physician may feel more comfortable using a buprenorphine product than a Schedule II opioid."

Sirgo says Belbuca is also less likely to abused than a pill, because the film patches are difficult to grind or liquefy for snorting or injecting.

PROP Founder Calls Opioids ‘Heroin Pills’

By Pat Anson, Editor

The founder of an advocacy group that seeks to reduce the prescribing of opioid pain medication is calling the drugs “heroin pills” and says patients may not be able to trust doctors who prescribe them.

Andrew Kolodny, MD, Executive Director of Physicians for Responsible Opioid Prescribing, appeared on C-SPAN this weekend to speak about the Obama administration’s efforts to combat prescription drug abuse and the increasing use of heroin. He also answered calls from viewers, including one woman who recently started taking a pain medication for arthritis and was worried about becoming addicted.

“In general, if someone’s calling me and asking me about this medication, as a physician my inclination would be to tell you to listen to your doctor and to trust your doctor,” Kolodny told the woman.

“Unfortunately when it comes to opioids, we’re in a situation where many of the prescribers have very bad information about these drugs, they’re really underestimating how addictive and how risky they are and overestimating how helpful they can be.  So I wish I could tell you that you should trust your doctor and talk to your doctor about this, but that may not be the case. This is a really difficult situation. We have doctors even prescribing to teenagers and parents not recognizing that the doctor has just essentially prescribed the teenager the equivalent of a heroin pill.”

Kolodny also compared opioid pain medication to heroin during an addiction conference Friday at the University of Richmond.

“When we talk about opioid painkillers we are essentially talking about heroin pills,” Kolodny said, according to a story in the Richmond Times Dispatch.

He told the conference opioids were “very important medications” to ease suffering at the end of life or after major surgery, but were often not appropriate for chronic pain.

“The bulk of the U.S. opioid consumption is not for end-of-life care or acute pain. The bulk is for common chronic conditions where leading experts who study them say opioids are more likely to harm patients than help them.”

On C-SPAN, Kolodny said many patients taking opioids for chronic pain mistakenly believe the drugs are helping them, when “the vast majority of them are not doing well.”

“What may be happening for many of them is that the opioid is actually treating withdrawal pain. They may not really be getting pain relief when you’re on a consistent dose over a very long period of time,” Kolodny said.

Kolodny and Physicians for Responsible Opioid Prescribing (PROP) are drawing new attention because of a significant role the organization appears to be playing in the drafting of opioid prescribing guidelines by the Centers for Disease Control and Prevention (CDC). As Pain News Network has reported, at least five PROP board members, including Kolodny, are on CDC advisory panels that are developing the guidelines. A link to PROP literature recommending “cautious, evidence-based opioid prescribing” can also be found -- unedited -- on the CDC’s website.

PROP President Jane Ballantyne, MD, and Vice-President Gary Franklin, MD, are both members of the CDC’s Core Expert Group, and board member David Tauben, MD, is on the CDC’s peer review panel. All three were heavily involved in developing restrictive opioid prescribing guidelines in Washington state.

Kolodny and PROP board member David Juurlink, MD, are members of a “Stakeholder Review Group” that is also providing input on the CDC guidelines.

Those guidelines recommend that “non-pharmacological therapy” and non-opioid pain relievers be used to treat chronic pain. Lower doses and quantities of opioids are recommended for acute pain. A complete list of the guidelines can be found here.

The CDC is currently revising the guidelines to meet a January deadline, using "rapid reviews" of clinical evidence “to address an urgent public health need.” The agency blames opioid pain medication for the overdose deaths of over 16,000 Americans annually.

Many pain patients are worried they won’t be able to obtain opioids if the guidelines are adopted. In an online survey of over 2,000 patients by Pain News Network and the Power of Pain Foundation, 95 percent said the guidelines and other government regulations discriminate against them. Most patients also said non-opioid pain relievers didn’t work for them and that their insurance usually didn’t cover therapies like acupuncture, massage and chiropractic care.  

In a conference call last week with stakeholders, CDC officials said the guidelines are being modified to emphasize that they are mostly intended for new patients and that patients currently taking opioids will still have access to the drugs.

“We do need a better answer for these 10 to 12 million Americans who are already on opioids,” Kolodny said on C-SPAN. “We’ll need a compassionate way of helping that population. I think what might be a little easier to do is to prevent what I would call ‘new starts.’ We need to get the medical community to understand that for most patients with chronic pain, long term opioids may not be safe or effective. And let’s avoid getting patients stuck on these medications, medications that are highly addictive.”

Kolodny said existing patients should have easier access to addiction treatment.

“One of the most effective medications for opioid addiction is a drug called buprenorphine or Suboxone,” said Kolodny, who is chief medical officer for Phoenix House, a non-profit that operates addiction treatment clinics.

“Unfortunately there are federal limits on the number of patients a doctor can treat with this medicine. And what we’re seeing is in parts of the country, like West Virginia and Appalachia, and in communities that have been hit very hard, you have doctors who have maxed out on the number of patients they can treat, which is a maximum of one hundred. And there are patients on waiting lists for this medication who are actually dying of overdoses while waiting on this list to be able to get buprenorphine.”

Ironically, buprenorphine is an opioid that is used to treat both addiction and pain. Although praised by Kolodny and other addiction specialists as a tool to wean addicts off opioids, some are fearful the drug is overprescribed and misused. Many addicts have learned they can use buprenorphine to ease their withdrawal symptoms and some consider it more valuable than heroin as a street drug.

Over three million Americans with opioid addiction have been treated with buprenorphine.  According to one estimate, about half of the buprenorphine obtained through legitimate prescriptions is either being diverted or used illicitly.

Researchers Say Chronic Pain Changes Brain Chemistry

By Pat Anson, Editor

A new study by UK researchers raises an intriguing question: Does chronic pain change brain chemistry and make pain more tolerable?

The answer is yes, according to a small study at the University of Manchester. Researchers there used Positron Emission Tomography imaging (PET scans) to measure the spread of opioid receptors in the brains of 17 arthritis sufferers and nine healthy control subjects

When they applied heat to the skin of study participants to induce pain, researchers found that the more opioid receptors they had, the higher their ability was to withstand pain. The number of opioid receptors was highest in arthritis sufferers, suggesting their brain chemistry had changed in response to chronic pain.

"As far as we are aware, this is the first time that these changes have been associated with increased resilience to pain and shown to be adaptive,” said Dr. Christopher Brown. "Although the mechanisms of these adaptive changes are unknown, if we can understand how we can enhance them, we may find ways of naturally increasing resilience to pain without the side effects associated with many pain killing drugs."

image courtesy of university of manchester

It’s been known for a long time that we have receptors in our brains that respond to natural endogenous opioids such as endorphins. Those same receptors also respond to opioid pain medications.

Some people seem to cope better with pain than others, and knowing more about their resilience and coping mechanisms may lead to the development of new ways of treating pain.

"This is very exciting because it changes the way we think about chronic pain,” said Anthony Jones, a professor and director of the Manchester Pain Consortium. "There is generally a rather negative and fatalistic view of chronic pain. This study shows that although the group as a whole are more physiologically vulnerable, the whole pain system is very flexible and that individuals can adaptively upregulate their resilience to pain.

"It may be that some simple interventions can further enhance this natural process, and designing smart molecules or simple non-drug interventions to do a similar thing is potentially attractive."

Researchers at Stanford University in California have also been studying this subject, trying to learn why some chronic pain sufferers are more resilient to pain.

“I think this study emphasizes some very important points about pain resilience,” said Dr. Drew Sturgeon, a fellow in the Stanford University Pain Management Center and Stanford Systems Neuroscience and Pain Laboratory. “If you think about chronic pain as something that poses a constant challenge and requires frequent adaptation, it makes sense that we would see changes in the brain that correspond with this process.  We see it frequently from a psychological standpoint, where people are able to learn and develop better strategies for coping with pain and reduce their fear and negative thoughts about pain after dealing with it for a while.”

Sturgeon and his colleagues say resilience may also stem from an enhanced ability to enjoy the rewarding parts of life – which makes it easier to cope with pain.  

“The idea would be that if a person had more opioid receptors available they would be more sensitive to the good stuff in life, and therefore more motivated by pleasurable experiences, such as spending time with friends, exercising -- rewards that get us back on the road to living a meaningful life,” said Beth Darnall, PhD, a pain psychologist, clinical associate professor at Stanford University and author of Less Pain, Fewer Pills.

“Theoretically, people who are known to be resilient probably have more endogenous opioids -- or they have made choices in life to optimize their experience of endogenous opioids and therefore have honed an internal reward system.”

Whatever the cause of resilience, many patients hope further studies will uncover new ways of treating pain.

"As a patient who suffers chronic pain from osteoarthritis, I am extremely interested in this research. I feel I have developed coping mechanisms to deal with my pain over the years, yet still have to take opioid medication to relieve my symptoms,” said Val Derbyshire. “The notion of enhancing the natural opiates in the brain, such as endorphins, as a response to pain, seems to me to be infinitely preferable to long term medication with opiate drugs.”

The University of Manchester study is being published in Pain, the official journal of the International Association of the Study of Pain.

Power of Pain: NERVEmber

By Barby Ingle, Columnist  

In a few short days Nerve Pain Awareness month begins – a global movement known in the pain community as NERVEmber.

I began the NERVEmber project in 2009 as a way to bring more attention to chronic nerve pain conditions such as Reflex Sympathetic Dystrophy (RSD/CRPS) and diabetic neuropathy. The term NERVEmber is derived from the burning pain people with neuropathy feel, combined with the month of November. 

The Power of Pain Foundation hosts the official NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber and bring awareness to the 150 plus conditions that have nerve pain as a symptom.  

The color orange is the international color for chronic pain awareness, which also fits right in with the fall colors we typically see.

Our largest spotlight throughout the month shines on RSD, which is one of the most painful conditions known to mankind. Yet, like many chronic pain conditions, RSD is misunderstood, mistreated and often misdiagnosed. 

Each day during the month of NERVEmber the Power of Pain Foundation will present an awareness task that we can all participate in. This year we are also giving away over $1,000 in prizes -- available to anyone who registers to participate and uses special hashtags on social media, completes daily tasks, and hosts or attends an event. The more you participate in official NERVEmber events, the more chances you have to win!

You can bring more awareness to conditions like RSD, CRPS and diabetes by posting every day in NERVEmber using social media tags on your posts such as @powerofpain and #PaintTheWorldOrange. Using these tags will earn participants chances to win some great prizes.

The Power of Pain Foundation and the #NERVEmber project is also supporting the #CRPSdayofaction, #RSDdayofaction, @theproject3x5’s, #OrangeInitiative,  #ColorTheWorldOrange, and #ColourTheWorldOrange. 

Official events include tasks shared on social media, wearing t-shirts, Paint the World Orange, and educational series.

The daily calendar of events are available here on the NERVEmber webpage.

One of our newest additions to the project is #painPOP. We are asking people to get involved by popping a balloon and challenging others to do the same or make a donation to help the Power of Pain Foundation continue our education, awareness and access to care programs.

We are asking participants to text, post or say something similar to, “I have the NERVE to be HEARD!"

We will also be posting educational videos on YouTube and our website. Watching videos and commenting on them gives participants more ways to win great prizes. For #PaintTheWorldOrange, we ask participants to post their #NERVEmber pictures on social media and to share your pics as you #PaintTheWorldOrange. Be sure to hashtag it #NERVEmber #PaintTheWorldOrange to increase awareness and your chances to win POP prizes.

Participants are also invited to create graphics of their own using #NERVEmber and #PaintTheWorldOrange. Don’t forget to WEAR ORANGE all month long! You can upload your orange photos to help us paint the world.

Tens of thousands have participated in past years from around the world and we are expecting even more this year. Don’t miss out on being part of a movement to make a difference.

For more information on NERVEmber visit http://powerofpain.org/nervember

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.

CDC Updates Opioid Prescribing Guidelines

By Pat Anson, Editor

The U.S. Centers for Disease Control and Prevention (CDC) is “still revising and making lots of changes” to its controversial draft guidelines for opioid prescribers, according to a source who listened to a CDC conference call today updating “stakeholders” about the guidelines.

But CDC officials gave few specifics on what modification have been made, and said the dozen guidelines will remain under a strict embargo until they are released in January.

“Overall, they tried hard to give the sense that they really listened and responded to our comments. But, of course, all they did was talk in generalities about changes that have been made, and we won’t see it again until it’s published,” the source told Pain News Network.

The draft guidelines ignited a storm of controversy in the pain community when they were released last month. The CDC is recommending “non-pharmacological therapy” and non-opioid pain relievers as preferred treatments for chronic non-cancer pain. Smaller doses and quantities of opioids are recommended for patients in acute or chronic pain.  A complete list of the guidelines can be found here.

A survey of over 2,000 pain patients by Pain News Network and the Power of Pain Foundation found that many are worried about losing access to opioid pain medications if the guidelines are adopted. Nearly 93 percent believe the guidelines would be more harmful than helpful to pain patients. Many also believe they will not decrease the use of illegal drugs but actually increase them, causing even more addiction and overdoses.

On today’s call, CDC officials said their most important goal was to maintain access to opioids for pain patients. They also emphasized that the guidelines are voluntary for primary care physicians, who treat the vast majority of pain patients. Language such as “usually” and “whenever possible” are being added to a number of guidelines to give prescribers more flexibility, according to the source.

One guideline that has raised serious concern would put an upper limit on opioid prescribing to a daily dose of 90 mg of morphine equivalent. One stakeholder during the call said that threshold was “arbitrary” and “perhaps dangerous.” CDC officials said the language in that guideline was modified extensively to emphasize that is intended for new patients, not patients who are already taking opioids at or above that dosage level.

The CDC said it received over 1,200 comments on the guidelines during a 48 hour window when it accepted comments from stakeholders and the public last month.  Although as many as 11.5 million Americans are on long term opioid therapy, public participation has been minimal in the guidelines development. Only two patient advocacy groups were included among the dozens of stakeholders and special interests invited to listen to today's conference call. A complete list of the stakeholders will be listed at the end of this article.

The CDC’s update came as the Obama Administration announced new efforts aimed at addressing prescription drug abuse. Over 40 organizations representing doctors, dentists, nurses, physical therapists and educators announced that over half a million of their members would  complete opioid prescriber training in the next two years. In addition, several media outlets, the National Basketball Association, Major League Baseball and other companies said they would donate millions of dollars for public service announcements about the risks of prescription drug misuse.

Call for Congressional Investigation

Meanwhile, the American Academy of Pain Management (AAPM) is urging the House Energy and Commerce Committee to look into how the CDC developed the opioid guidelines. In a letter to committee chairman Rep. Fred Upton (R-MI), the AAPM said the process used in developing the guidelines was “deeply flawed” by secrecy and a lack of transparency, as well as potential conflicts of interest with many of the outside advisers the CDC consulted with.  

“We urge you to strongly encourage CDC to withdraw this draft guideline and, should they decide to start over, to engage in a process that is more transparent and inclusive of the needs and views of all clinicians and patients—both those with pain and those who misuse opioid pain relievers,” wrote Bob Twillman, PhD, Executive Director of AAPM.

“Unless these questions are adequately addressed, the organizations with clinicians who strive to treat chronic pain, and in fact do so with opioids, will not support them but will, by necessity, be forced to actively oppose them.”

Washington Post Calls Guidelines “Promising”

Secrecy surrounding the CDC guidelines has been one reason they haven’t gotten much coverage in the mainstream news media. One example is the Washington Post, which has yet to run a story on the guidelines or the controversy surrounding their development.

But that oversight didn’t stop the Post’s editorial board from weighing in on the issue. In an editorial headlined “The CDC’s promising plan to curb America’s opioid dependence,” the Post said the guidelines would turn opioid prescribing “in an appropriately more cautious direction.”

The editorial also dismissed a letter from the American Cancer Society opposing the guidelines, saying its concerns about cancer patients being denied pain relief were “overstated.”

“It’s true, as the cancer society letter notes, that the CDC guidelines are more than mere suggestions and will influence ‘state health departments, professional licensing bodies or insurers.’ That is precisely why they can be so beneficial,” the Post said.

“Until now, government, medicine and the private sector have too often underestimated the risks, individual and societal, of widespread opioid prescription. The CDC has the prestige and authority to correct the balance. After incorporating valid comments from the cancer society and other interested parties, the CDC plans to publish in early 2016, and we see no reason to delay.”

CDC's Stakeholder Review Group:

American Academy of Neurology; John Markman, MD
American Academy of Pain Medicine; Edward C. Covington, MD
American Academy of Pain Management; Bob Twillman, PhD
American Academy of Pediatrics; Roger F. Suchyta, MD, FAAP
American Academy of Physical Medicine and Rehabilitation; Christina Hielsberg
American Cancer Society; Mark Fleury, PhD
American Chronic Pain Association; Penney Cowan
American College of Medical Toxicology, David Juurlink, BPharm, MD, PhD
American College of Obstetrics and Gynecology; Gerald “Jerry” F. Joseph, Jr, M.D.
American Geriatrics Society; Mary Jordan Samuel
American Hospital Association; Ashley Thompson
American Medical Association; Barry D. Dickinson, PhD
American Pain Society; Gregory Terman MD, PhD
American Society of Anesthesiologists; Asokumar Buvanendran, M.D.
American Society of Addiction Medicine; Beth Haynes, MPPA
American Society of Hematology; Robert M. Plovnick, MD, MS
American Society of Interventional Pain Physicians; Sanford M. Silverman, MD
Physicians for Responsible Opioid Prescribing; Andrew Kolodny, MD

Jumping from Fire into Work Comp Nightmare

By Ron Angel, Guest Columnist

I was injured on July 1, 2001 while fighting fire for the U.S. Forest Service in Tok, Alaska.

At the end of a long day, we were setting up camp and I was carrying heavy packs which weighed about 100 pounds.  While walking I felt pain radiating from my neck and through my shoulders. After a restless night, I woke up the next day with a stiff neck and more pain. 

Every day for the next two weeks it got steadily worse and spread down my right arm. At the end of the first week I went into a local clinic where the doctor knew right away that I had blown out a disc in my neck. He prescribed Percocet for my pain.

After I returned home, the pain continued to worsen and I ran out of Percocet; so I went to the ER in Sandpoint, Idaho. They refused to give me narcotics for pain and gave me Neurontin instead, which did nothing for pain relief.

The pain continued to increase and it was more than I could handle. It was an 11 on a 10 scale so I walked into my doctor’s office in tears and showed him I was unable to lift my arm. He set me up for an MRI, which showed I had a herniated disc and two bulging discs.

Ron Angel

I had submitted a claim to the Department of Labor’s Office of Workers’ Compensation (OWCP) immediately after returning from Alaska. I tried to get OWCP to help me, but was mostly unable to contact them. When I did get a hold of someone, they had no sympathy and were extremely adversarial. 

I consulted with a neurosurgeon and he said I needed surgery immediately. I called my health insurance, but they said it was work related so they would not cover it. I still had no response from federal OWCP. 

After not being able to sleep for nine days due to the pain, I could no longer take it. I got my pistol and had it on my lap. I called Blue Cross Blue Shield and told them that if they didn't help me I was going to kill myself immediately. They begged me not to and said they would cover the costs and deal with Federal OWCP. I had my lifesaving neck surgery on August 9, 2001.

I finally received a letter from OWCP dated Oct. 16, 2001 telling me they decided to accept my claim. I would have been dead had I not had the surgery to relieve my neck and arm pain. 

Federal OWCP does not accept back injuries, brain injuries or heart injuries for a settlement, but if an injury of one of them affects an accepted body part they will pay a settlement for the loss of use. Due to the loss of strength, mobility and the continuing pain, they rated my right arm a 23% loss.

During a follow up with the surgeon in 2004 he noticed that I had some movement of an adjacent disc that was causing me some discomfort. He said this is common with fusion patients and that we should just monitor it. If it started to cause me more problems he would have to go back in and fuse the next segment. This is called adjacent segment disease and it occurs in about 25 percent of fusion patients.

I am now retired and a couple of months ago I began to lose strength in my right arm, which I can't raise above my shoulder.  Pain is now radiating from my shoulder down to my elbow. I would rate my pain at a level of 4 today.  I contacted OWCP for authorization to get a new MRI, but they informed me that due to the lack of activity they had closed my case in 2013.

I explained they should have provided notification because my surgeon had said that eventually I would need another fusion. They told me that since they closed it, I will have to file another work comp claim for a re-occurrence of the injury. 

In order to re-open my claim, OWCP requires a narrative from the doctor that states the new symptoms are connected to my original injury in 2001. They also require all of my medical records since 2001, five other requirements for the doctor, and three pages of questions that I have to answer. 

My surgeon says the bulge in my disc is severe and another fusion is necessary, but he won’t provide a statement to OWCP because he is tired of dealing with them. He said he has another patient who has been trying for approximately two years to get his claim reopened, unsuccessfully. He doesn't have time to play their games. 

Since my doctor will not give me a statement, the only way I can get it fixed is if my health insurance will cover it. I'll be responsible for 20% of the cost!  This could have been avoided if OWCP had contacted me before arbitrarily closing my case. 

Now it looks like I get to go through the same trials to fight for my next fusion, which OWCP claims was not caused by the original injury. It looks like my bureaucratic nightmare with federal work comp is starting all over again.    

Ron Angel lives in Idaho.

Pain News Network invites other readers to share their stories with us.

Send them to:  editor@PainNewsNetwork.org.

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

Mourning the Loss of a Life Once Had

By Jennifer Martin, PsyD, Columnist

Being diagnosed with a chronic condition is a loss.  In fact, it is comprised of many losses. 

It may be a loss of the person we used to be.

It may mean a loss of independence.

It may mean a loss of dreams and goals.

It may mean a loss of some of the people in our lives who we thought were close.

It is the loss of the life we once had.

For many of us with chronic conditions, living with pain or illness means daily medications, injections, surgery, physical therapy, and weekly or monthly doctor appointments.  Not to mention living with constant pain. 

These are things we could never have dreamed of before our diagnosis. We are forced into a life-long journey that is strange, painful and full of new challenges.

We now need to try to figure out how to help our family and friends understand what we are going through, while we ourselves try to decipher what it means for our future.  We need to figure out how to balance work, family, kids, taking care of a home, and hobbies – all now with pain, fatigue and frustration. 

Often times, depression and anxiety step in when we realize that the life we once had is now gone and that our future is filled with the unknown.  The mourning process begins.

It is important at this point to allow ourselves to experience the mourning process.  There is no one-size-fits-all when it comes to grief and mourning.  Cry, scream, and yell if you have to.  Talk to a friend or therapist if it would help.  Start journaling.  Write a letter to your pain and rip it up or burn it.  It doesn’t matter what you do -- just do something!  And then, at some point, it is important to try and live a new normal.

Finding a new normal means weaving our way, however slowly, through the new challenges we face daily.  Do some research and find a great doctor who you trust.  Research the medications you are being prescribed.  Find what works for you, whether it’s hot/cold packs, a heating pad, medications, rest, a support group, yoga, acupuncture, meditation, or light exercise.

Plan for the future as best you can:  Set new goals and make a plan to reach them.  Do what you can each day.  Talk with your family and friends about what you need from them and work on being comfortable accepting help.

Having a chronic condition, however painful, uncomfortable, horrible, scary and unfair, doesn’t mean you can’t be happy again.  But in order to be happy it is important to mourn the loss of who you were and slowly put the pieces of your puzzle back together.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

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.

1 in 10 College Students Misusing Pain Meds

By Pat Anson, Editor

One out of 10 college students are misusing prescription pain medications, according to a new survey conducted on eight U.S. college campuses. About a third of students said it was easy or very easy to obtain pain medications.

Nearly 4,000 graduate and undergraduate students were surveyed in the 2015 College Prescription Drug Study (CPDS) by Ohio State’s Center for the Study of Student Life. 

The anonymous survey of students at six public and two private colleges and universities in five states is believed to be the most comprehensive study of prescription drug misuse on multiple campuses.

Stimulants such as Adderall and Ritalin are the most widely misused prescription drug. About 18% of undergraduates reported misusing stimulants. The great majority (83%) received them from friends and most said they used the drug to help them study or improve their grades.

“At one time, college students most commonly misused drugs to get high,” said Kenneth Hale, a clinical professor of pharmacy at Ohio State. “But today, students also use medications to self-medicate, to manage their lives. They are using drugs to control pain, to go to sleep, to relieve anxiety and to study.”

For example, 55% of students who misused pain medications said they did it to relieve pain, while 46% said they did it to get high. More than half who misused sedatives said their aim was to get to sleep, while 85% who misused stimulants wanted to improve their grades or studying.

About 9% of undergrads used sedatives, with nearly half saying it was easy or very easy to find them on campus.

The misuse of prescription drugs often came with side effects. About 20% of those who used pain medications said they were depressed and 17% said they experienced memory loss.

Students may overestimate the value they get from using prescription drugs, particularly stimulants. About two-thirds of the students said stimulants had a positive effect on their academics, but researchers say that’s probably not true.

“Studies have shown that students who misuse stimulants tend to have lower GPAs,” Hale said. “Some students think of them as cognitive enhancers, but they are really cognitive compensators for students who didn’t go to class, didn’t study and then have to stay up all night to cram for an exam.”

Misuse of prescriptions drugs often led to illegal drugs. More than half of the undergraduates who misused prescribed meds had used illegal drugs in their place at some point. Marijuana was used by half of undergrads who misused controlled drugs, followed by cocaine and hallucinogens at 19 percent. Nearly 2% moved on to heroin.

“Research shows that the misuse of prescription pain medications can be a stepping stone to heroin, and the average age for starting the misuse of these medications falls within the traditional college years,” Hale said.

A 2012 survey found that one in four American teenagers has misused or abused a prescription drug at least once in their lifetime. The survey by The Partnership at Drugfree.org found that teenage abuse of opioids like Vicodin and OxyContin had leveled off but remains high. Over 2.1 million teens admitted misusing narcotic painkillers in the past year.

Chronic Pain Lessons: Paying It Forward

By Pat Akerberg, Columnist

Millions of us have gone through an exhaustive search involving multiple physicians and tests -- and then waiting and worrying to understand what causes our pain.

When first hearing our diagnosis, there’s relief in finding a name for our suffering.  We reason that if our condition has a name, then it must have a cure or treatment.  Sometimes things do fall into place that way. 

But if they don’t, the uncertain path ahead creates a fear of the unknown and raises many worrisome questions that beg for answers.  That was my case. 

Here are some lessons that I’ve learned along the way to tame the fear and provide some proactive direction:    

Don’t allow fear to take over.  It has been shown that stress can aggravate an already painful condition.  Worse, underlying anxiety has a way of undermining our judgement and clouding our decisions, just when clarity is most needed.  Some medications can even have that effect.

Find an advocate.  You may be off-kilter, so it’s wise to enlist a friend or family member to accompany you to appointments.  He/she can be an invaluable resource who can take notes, help with recall, and remind you what to ask.

Join a support group.  There’s an irreplaceable strength gained from others’ sharing their similar experiences, support, and friendship.  Giving help and receiving it offers a two-way chance to find meaning and purpose along the way.  My facial pain support group – www.fpa-support.org – is often a lifeline for me.

Slow down.  Many of you may be working, have families to raise/support, live alone, etc., and have a heightened sense of urgency to get your pain under control quickly.  Speed can cause hasty choices that can’t be undone before the risks of all options are considered. 

Become informed.  Take an active role in your health care by doing a solid amount of research (see PNN's patient resource section here), networking, and physician interviews.  Prepare questions beforehand and don’t hold back. If your questions aren’t received well, that’s a red light. 

The decisions you make will impact your life going forward.  I assumed there would be responsible, committed after-care with my brain surgery.  When serious complications happened, I learned (too late) that was not the case.  Had I clarified upfront, my choice in surgeons would have been different.

Learn how to describe your pain.  Assist those treating you by using specific pain terms that describe yours, such as: stabbing, shocking, burning, tingling, pins and needles, numb, intermittent, constant and describe where.  It helps to keep a daily log of your pain patterns.

Current medical practice relies on the 1 to 10 scale for pain with frowning and neutral faces.  Many of us feel pain way beyond a 10 and need to explain that respectfully. 

Looks can work against you.  If you make the mistake I did (holding onto some vestige of control) by wearing make-up and fixing my hair – beware.  Unfortunately, many doctors judge us by visual appearance and if they think we look “good,” disbelief or downgrading of our pain and need for medications may follow.  This can apply to some family members and friends too.

Don’t act without a clear diagnosis.  Different treatments or medications have varying degrees of success, depending on your diagnosis.  Specific protocols for your particular diagnosis need to be followed. 

All too often I’ve observed individuals with trigeminal neuralgia who aren’t clear about their diagnosis, anatomy or specific pain, but who still prematurely consider having surgery or other destructive nerve procedures done that they regret later.

Get more than one opinion.  Research the experts nationwide who have proven track records.  Many surgeons or physicians will consider phone consults.  So don’t limit yourself solely to local resources.  If I had a do-over, I would have gone out of state.

Don’t wait to do this until you are at the end of your rope.  You will also need to investigate what your insurance will and won’t cover. Pay attention to the odds of those things that research indicates are more successful and ask others about their experiences and any complications involved.

One size does not fit all.  You can’t automatically apply someone else’s experience to your situation and assume it will be the same.  We each have different genetics and medical histories.  Results vary individually. 

Consider complementary and alternative medicine.  If initial medications don’t work, don’t assume surgery is next.  There are many combinations to try along with other alternative options.  Alternatives can involve upper cervical chiropractic (a unique specialty), acupuncture, cranial-sacral therapy, massage, supplements, and nutritional approaches.

The downside may be some out of pocket costs.  The upside holds potential benefits with very low risk. 

Trust your instincts.  This is the trusty combination of your intuition and innate instincts (or gut feeling) known as the mind-body connection.  You know yourself better than anyone.  If in doubt, wait until you reach an inner peace or something else emerges.

Begin with the least invasive, low risk options first and invasive last.

Adjust your expectations.  Chronic pain alters our lives and that of our loved ones.  Some people will have empathy, some may not believe you entirely, others will be amazingly supportive, and others may be pretty disappointing.

It’s not your fault!  When you can’t work, get out, drive, or suffer other limitations, it can be very isolating.  We can become be our worst critics adding insult to injury.  Find healthy distractions, one of mine is coloring books for adults.   

Express yourself.  To counter blue moods, reach out even when you don’t feel like it.  Learn to ask for help.  Holding it all in undermines our psychological and emotional well being.  A few close mutual relationships with people who care and try to understand are good medicine. 

Thankfully, our friends and family help us to cope one day at a time, believe that something better is possible, and know that we are not alone in this learn-as-you-go journey.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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.

7 Things You Should Tell Congress About Pain

By Janice Reynolds, Guest Columnist

With all the shock, discussion, and fear the CDC’s so-called “guidelines” have raised, another threat has slipped past us.  That threat is legislative involvement in pain medication, as well as the belief that addiction to prescription medication is out of control and the Food and Drug Administration is derelict in its duties.

For some politicians, pain is not bad enough to need opioids unless you are dying of terminal cancer.

A group of U.S. Senators wants to investigate the FDA for approving OxyContin for children. Recently, presidential candidate Hillary Clinton was quoted as saying, “We have got to take another look at the ease with which the opioids are being prescribed.  I am very concerned that the FDA has approved a form of opioids for children. And I find that absolutely incomprehensible." 

I gather they would rather sick children be left to suffer.

What is going on?  Addiction to prescription medications is declining due to costs and abuse deterrent formulas.  The approval of OxyContin for children should not have raised concerns.  Remember all the panic and hysteria with the approval of Zohydro?  It has been over a year without problems, not that anyone who cried “wolf” about Zohydro has followed up on that.

I believe it is imperative that providers who understand good pain management join with pain sufferers and write to our Senators, Representatives, and Hillary Clinton -- not only to dispute the CDC, but to tell our stories.  We are a significant number and understand the truth.

People in pain are millions strong and should be having a bigger impact.   Everyone needs to recognize that chronic pain covers hundreds of pain syndromes, and one treatment does not work for everyone.

There has been quite a lot in the last year belittling people with pain and spreading misinformation – including one horrible article with the headline “Commentary: Exaggerating our pain.”

The myth that there is no evidence to support the safe use of opioids is being constantly reinforced. It is so very important we speak up and educate those in government who could potentially make our lives even worse.  I believe it is imperative that people with pain and providers (who haven’t sipped the Kool-Aid) write and tell our Congressmen and women what the truth actually is.

Here are seven talking points: 

1) Children recovering from surgery were already being prescribed OxyContin off label.   There is no evidence to support claims that the FDA’s approval for pediatric use increases addiction.  Do they believe that children should suffer with pain?

2) With abuse deterrent opioids and higher costs, a rapid shift to heroin and other street drugs is taking place. So where does the prescription drug “epidemic” come from and where is the evidence?

3). The CDC’s alarmist attitude and claims that addiction is caused by prescription opioids is based on the opinions of addiction treatment experts and others with no experience in pain management.

4) 100 million people living with pain should have evoked some type of compassion from the CDC. After all, addiction and obesity are treated as “epidemics.”  One would have to believe the CDC is reacting with prejudice. I can’t recall the CDC ever saying anything about people with pain except in regards to addiction.

5) Those in leadership as well as others need to hear the stories of people with pain; what has caused your pain, what has happened to you individually, and how it affects  your family.  They need to know how hard it is get medication, difficulties with pharmacies, problems finding a provider, the harmful consequences of failed urine drugs tests that are often inaccurate, and the providers who stop caring for patients because they’re worried about the DEA and prosecution. 

6) They need to understand that financial issues are frequently a block to good pain management. Insurance often doesn’t pay or pays inadequately for medication and non-pharmacological therapies that actually work for patients.

7) They need to be asked why they are listening only to the CDC and advocacy groups like Physicians for Responsible Opioid Prescribing (PROP) instead of experts in pain management.

Please take the time to write. We need for these stories to be told – not by getting angry – but by presenting the facts of how living with pain affects you and how the myths about taking opioids for pain affects you.

When you write an aide may call you, so have a brief list of talking points handy. It drives them crazy when you know what you are talking about and can refute their point of view.

As a pain management nurse, it infuriates me that wrong information is being given priority. As someone who has persistent pain and has a good pain plan that includes opioids, I am frightened every day that politicians and regulators will destroy my life.  Without opioids my pain would be unbearable.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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.

CDC Should Listen to Pain Patients

By Shaina Smith, Guest Columnist

In the wake of the release of the Centers for Disease Control and Prevention's opioid prescriber guidelines, patient advocacy groups and chronic pain patients have been anything but silent. For U.S. Pain Foundation, the process by which the guidelines were crafted seems to have left out a significant part of the equation: chronic pain patients.

When it comes to patient care, we are not alone in this battle to advocate on behalf of those who cannot speak. There are like-minded organizations working diligently to ensure the basic rights of the chronically ill. What we are finding within the nonprofit realm, however, is that higher commanding entities, formed to support the health and well-being of patients, are creating additional hurdles for those they should be helping.

Closed door conversations without consideration of the impact such discussions and decisions can have do not create improved methods that will be embraced by pain warriors. On the contrary, they work against the patient and will cause potential harm.

Working alongside U.S. Pain Foundation volunteers known as Pain Ambassadors, I hear too often chilling and heart-wrenching stories about insurance companies bickering over who will cover what prescription (if they have insurance at all), along with state laws that create additional roadblocks to fair treatment and access.

When I learned of these guidelines, I immediately thought of all those individuals who have already messaged me, begging that we come up with a plan to provide fair access to the treatment they were seeking. After reading the survey results generated by Pain News Network and the Power of Pain Foundation, it is clear that the window for providing fair access and treatment for chronic pain patients is closing.

But there is always hope and ways we can unite our voices to gain back a sense of balance in the way patients are treated by healthcare providers, regulators and lawmakers.

Perhaps the most alarming statement made by over 2,000 participants who completed the survey was that the vast majority feel the CDC guidelines would be more harmful to patients than helpful. This statement is supported throughout the survey results; many fear there will be a rise in pain patients committing suicide, and believe the guidelines will not resolve the misuse and abuse issue at all.

The results are not surprising. While the war on drugs has taken the media’s attention by the horns, patient advocacy organizations like U.S. Pain Foundation have been fighting their own battles on behalf of the brave pain survivor; seeking fair and timely treatment, access to integrative and prescription therapies (not exclusive to opioids) and fighting societal stigmas.

Although we are grateful for lawmakers taking a stance to promote easier access to treatment through the elimination of unjust practices such as step therapy and specialty tiers; there are still many proposals written with good intentions that will potentially cause negative impacts to the 100 million Americans living with chronic pain.

Sadly, the CDC guideline for opioid prescribers is one such proposal. It aims to alleviate misuse and abuse, and attempts to be an educational tool for healthcare providers, but also attempts to take the place of a patient’s treatment plan crafted by that patient and their doctor.

U.S. Pain Foundation has for years prided itself in becoming involved in proposed legislation to ensure the patient-doctor relationship is not hindered by regulations that second-guess the doctor’s initial findings, diagnosis and treatment plan for each patient. We will champion for similar models as the CDC continues revising its prescriber guidelines.

In reading the survey results, it is clear that there are many variables which were not considered in the guidelines. One such variable would include insurance coverage for additional treatments if a patient’s doctor follows the guidelines and decides to no longer prescribe opioid medications.

When asked if their health insurance covered non-pharmacological treatments such as acupuncture, massage and chiropractic therapy, 54% of survey participants stated their insurance did not cover such treatment. I shake my head while reading these answers as I find it hard to believe that in this day and age we are still fighting for basic patient rights to access modalities that may lessen a person’s suffering.

Patients Worried What Their Doctors Will Do

Where are pain patients to turn if these guidelines are put in place and they are not even given alternative means to offset their discomfort?

It is inevitable that many primary care physicians or pain specialists will become fearful if they decided to continue prescribing opioids once the guidelines are in full effect. The survey results clearly reflect a large group of worried pain sufferers whose gut reaction is telling them that their doctors will prescribe opioids less often or not at all if the guidelines are implemented.

Moving forward, the nation can learn from the failed attempt at including the voices of those who would be directly impacted by guidelines. When I say failed, I am speaking of the lack of communication between the CDC and organizations that are fighting access issues on a daily basis. I am speaking of the pain patient who was not privy to join in the CDC’s webinar and has not been given a clear understanding of the CDC’s intent.

The CDC should see the concerns spelled out in the survey and the impact the prescriber guidelines could have on patients. Had the chronic pain community been more involved with the development of the guidelines, less concern would be shared among advocacy groups and patient-centered organizations within the United States.

How each proposed guideline may impact a person’s mother, father, chronically ill child, grandmother, sister, husband or friend should have been expressed and explored further. The CDC should have included patient advocates and pain survivors to lend their expertise during the development stages of the prescriber guidelines.

After reviewing the survey results, U.S. Pain Foundation’s National Director of Policy and Advocacy Cindy Steinberg said, “The overwhelming feeling of survey respondents appears to be that the CDC is discriminating against people with pain.”

“Chronic pain sufferers are very worried that if these CDC guidelines go forward, they will not be able to access a treatment that they can rely on,” she added. “They are concerned that these guidelines will be very harmful for them and that they will lead to a lot more suffering for people with pain.”

U.S. Pain Foundation supports all treatment options that will lessen a person’s suffering. Reducing options, which will be the case as healthcare professionals will likely follow guidelines implemented by the CDC, only exacerbates an already existing battle for chronic pain patients.

Pain warriors are unfortunately made to feel that their pain is not real, their attempt at finding relief makes them drug seekers, and they should fail first at other options before receiving the care agreed upon by their doctors. Everyday obstacles faced by chronic pain patients, including me, cause added stress and hardships.

The CDC should consider the already struggling pain survivors before moving forward with guidelines that would impose additional adversity on the pain patient.

Shaina Smith is Director of State Policy & Advocacy and Director of Alliance Development for U.S. Pain Foundation Inc.

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.

Wear, Tear & Care: Aroga Yoga

By Jennifer Kain Kilgore, Columnist

One of the most popular remedies that pain management doctors like to recommend for patients is yoga. Not only has yoga created a revolution in the fitness and apparel worlds, but it also is touted as a great way for chronic pain patients to exercise.

This generally leaves us patients in a strange spiral of “I hurt too much to work out” and then feeling worse because we aren’t moving.

Physical activity is necessary in whatever form we can manage. I have several instructional DVDs, but only a few of them are actually tailored to people with illness and pain. I decided to go hunting for the Big Kahuna.

My search was not in vain: I discovered Kayla Kurin, creator of Aroga Yoga. “Aroga,” which I thought was just a great rhyme, actually means “healthy, well, or free from disease.” Ms. Kurin is a yoga teacher based in London who focuses exclusively on chronic pain and illness, as she uses it to manage her own chronic fatigue syndrome.

“I had tried some naturopathic remedies and supplements, but didn’t find any relief from them,” she said. “For many years I was on strong sleep medication that helped me get some semblance of a night’s sleep and get through the day, but I became resistant to all of the medications and eventually stopped those as well.”

It was around then that she decided to try yoga, as she wandered into a bookstore and saw an instructional DVD for sale. 

“This was a huge turning point for me,” she said. “Once I started feeling better from yoga and meditation, I made a lot of dietary and lifestyle changes that helped me heal.”

Ms. Kurin has now been practicing for eight years and teaching for almost two, focusing on vinyasa flow and restorative methods with Yoga London. She relies on her own chronic illness in order to find the most effective poses for others, as even though yoga therapy is beginning to get more popular, there is currently only limited information about it. She has had to combine several schools and theories -- mostly vinyasa flow, restorative yoga, and iyengar -- to create her own chronic pain/illness program.

image courtesy of kayla kurin

It didn’t take long for her to realize that yoga was beneficial, as she left her first session feeling “very relaxed, but also alert. It was a unique feeling and led me to believe that there might be something behind this whole yoga trend.”

Even then, it took about two to three months of regular practice before she could see lasting effects. There were days she was too exhausted to get on the mat, and when asked how she managed to keep a daily practice, she said at first she could only make herself do five minutes. Five minutes would turn into ten, and so on. As she said, “I think that for both yoga and meditation, the longer you practice consistently, the more results you will see.”

She recommends that patients start with a few different types of yoga to see what works best, such as restorative, iyengar, and gentle hatha classes. “For example, some people with CFS swear by hot yoga; others found it was much too intense,” she said.

Even patients who are bed-bound or recovering from severe injuries can find a way to participate in their recovery. Ms. Kurin encourages them to first check with their doctors before even trying deep breathing exercises or a bed yoga program.

Every class is adaptable. In the chronic pain/illness yoga program, the first few classes are entirely sitting or prone positions. They can be done from a bed or chair, the latter of which Ms. Kurin is going to implement into future online courses.

“For example, if a patient is not able to stand or has trouble switching positions, we can work together to make adjustments to the class so it works for them,” she says.

Her online chronic illness class runs for six weeks with hour-long videos, and costs about $100. It focuses on breathing exercises and relaxation techniques to lessen pain and stress, improve sleep, and increase energy. Students of any level will find benefits. While each chronic pain/illness series shares the same core lessons, there are enough tweaks that even repeat students will learn something new (as I am sure I will, since I took the previous class and adored it; my only complaints were technical in nature, as the microphone hookup had some reverb in the first two sessions).

While online videos don’t offer the immediate feedback from teachers that a live class does, Ms. Kurin likes this format because nobody has to miss a class because of pain or illness. Everything is at the individual student’s pace.

“If a student is struggling with any of the poses, I can make them a video showing them adjustments for their body,” Ms. Kurin said. She is planning live workshops for later this year, having just taught one on sleep and creativity in Greece; her next idea is a chronic pain workshop in Edinburgh, Scotland. She also wants to offer live classes over Skype, which excites me to no end.

I loved the flexibility of the class, how I didn’t have to push myself through sessions when I felt physically terrible. Instead of feeling like exercise, it felt like a day at the spa for my battered body. Ms. Kurin understands her students on a fundamental level; she knows that there are just some days you can’t do it.

But five minutes a day… We can handle that!

The Takeaway: Aroga Yoga, Yoga for Chronic Illness.

For £65 (or $100.38), you get six one-hour videos of yoga, meditation, and breathing exercises; one-on-one unlimited email support for the duration of the course and three months afterward; and two group chat sessions. The next course begins October 19 and ends November 30, and students have lifetime access to the videos.

I will be taking the course again. I hope to “see” you there!

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

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

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

CDC Cites ‘Urgent Need’ for Prescribing Guidelines

By Pat Anson, Editor

In the wake of growing criticism over its draft guidance for opioid prescribing, the Centers for Disease Control and Prevention (CDC) has released a new study it claims is proof of an “urgent need for improved prescribing practices.”

The agency released its first multi-state report from a federal surveillance system that analyzes data from eight states’ prescription drug monitoring programs (PDMP).

The report, published in the Morbidity and Mortality Weekly Report (MMWR) Surveillance Summary,  tracked prescribing patterns during 2013 in California, Delaware, Florida, Idaho, Louisiana, Maine, Ohio and West Virginia -- about a quarter of the U.S. population.

The report found that prescribing patterns varied widely by state, not just for opioid pain medications, but for stimulants and benzodiazepines, a class of anti-anxiety drugs.

Louisiana ranked first in opioid prescribing, and Delaware and Maine had relatively high rates of prescribing extended-release (ER) opioids. Delaware and Maine also ranked highest in opioid dosage and in the percentage of opioid prescriptions written. California had the lowest prescribing rates for both opioids and benzodiazepines.

In most states, only a small minority of prescribers are responsible for most opioid prescriptions. The report also found that people who obtained opioid prescriptions often received benzodiazepine prescriptions as well, despite the risk for adverse drug interactions.

The wide variance between states was cited as a reason to bring more uniformity to prescribing practices.

“A more comprehensive approach is needed to address the prescription opioid overdose epidemic, including guidance to providers on the risks and benefits of these medications,” said Debra Houry, MD, director of CDC’s National Center for Injury Prevention and Control.

“Every day, 44 people die in American communities from an overdose of prescription opioids and many more become addicted,” said CDC director Tom Frieden, MD. "States are on the frontline of witnessing these overdose deaths.  This research can help inform their prescription overdose prevention efforts and save lives.”

Last month the CDC unveiled a dozen draft guidelines for primary care physicians who prescribe opioids. The guidelines recommend “non-pharmacological therapy” and non-opioid pain relievers as preferred treatments for chronic non-cancer pain. Smaller doses and quantities of opioids are recommended for acute or chronic pain.  A complete list of the guidelines can be found here.

Critics faulted the CDC for developing the guidelines in secret and with little input from patients or pain management experts.

Earlier this month, the California Medical Association sent a highly critical letter to Frieden and Houry saying it had “significant concern” about the secretive nature the agency used in developing the guidelines, which it said were “not appropriate nor transparent.”

“It is deeply concerning that the details behind the 12 recommendations are being made available to some unknown organizations and individuals for review and comment, but not to the general public. The information available to the public was so limited and the time to comment so brief, that it created the perception that the end result has already been determined,” wrote Luther Cobb, MD, President of the California Medical Association, which represents over 40,000 healthcare providers.

“The public must also be able to assess the potential biases and the opioid prescribing expertise for those involved in the creation of the guidelines. The public needs to know who was involved as well as their qualifications and conflicts.”

Cobb called on the CDC to publicly release all materials and recommendations used to develop the guidelines and to allow for a public comment period of 90 days.

The CDC accepted public comments for just 48 hours after releasing the guidelines during an online webinar last month.  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.

Patients Say Non-Opioid Therapies Often Don’t Work

By Pat Anson, Editor

Pain treatments recommended by the Centers for Disease Control and Prevention (CDC) as alternatives to opioids often do not work and are usually not covered by insurance, according to a large survey of pain patients.  Many also believe the CDC’s opioid prescribing guidelines discriminate against pain patients.

Over 2,000 acute and chronic pain patients in the U.S. participated in the online survey by Pain News Network and the Power of Pain Foundation. Most said they currently take an opioid pain medication.

When asked if they think pain patients are being discriminated against by the CDC guidelines and other government regulations, 95% said they “agree” or “strongly agree.”  Only 2% said they disagree or strongly disagree.

The draft guidelines released last month by the CDC recommend “non-pharmacological therapy” and “non-opioid” pain relievers as preferred treatments for chronic non-cancer pain. Smaller doses and quantities of opioids are recommended for patients in acute or chronic pain.  A complete list of the guidelines can be found here.

“Many non-pharmacologic therapies, including exercise therapy, weight loss, and psychological therapies such as CBT (cognitive behavioral therapy) can ameliorate chronic pain," the CDC states in internal briefing documents obtain by PNN.

DO THE CDC GUIDELINES AND OTHER GOVERNMENT REGULATIONS DISCRIMINATE AGAINST PAIN PATIENTS?

“Several nonopioid pharmacologic therapies (including acetaminophen, NSAIDs, and selected antidepressants and anticonvulsants) are effective for chronic pain. In particular, acetaminophen and NSAIDs can be useful for arthritis and low back pain, and antidepressants such as tricyclics and SNRIs as well as selected anticonvulsants are effective in neuropathic pain conditions and in fibromyalgia.”

Most patients who were surveyed said they had already tried many of these non-opioid treatments and had mixed results, at best.

“Does the CDC really believe that a pain patient on long term opiates hasn't already tried everything else possible?” asked one patient.

“The CDC says don't do something but comes up with NO viable, realistic alternatives. Tylenol, etc., are unrealistic. Exercise is unrealistic when you are in too much pain to move! “ said another patient.

“Anti-anxiety meds are just as addictive. Over the counter pain medicines are not strong enough to cover the pain in a patient with chronic pain. And there are hundreds of pain patients who can't take NSAIDs because of an allergic reaction. Same thing with steroids,” wrote another.

When asked if exercise, weight loss or cognitive behavioral therapy had helped relieve their pain, only about a third of the patients surveyed said they “helped a lot” or “helped a little.” Nearly two-thirds said they “did not help at all.”

Over half said non-opioid medications such as Lyrica, Cymbalta, Neurontin, anti-depressants and anti-anxiety medications “did not help at all.”

Over the counter pain relievers such as acetaminophen and NSAIDs were even less helpful. Three out of four patients said they “did not help at all.”

“We must be mindful of the treatment options that the CDC guidelines stress over opioids,” said Barby Ingle, president of the Power of Pain Foundation. “For instance in my case, taking NSAIDS for an extended period (a little over 1 year) caused internal bleeding and ulcers which lead to being hospitalized, a surgical procedure, and months of home nursing and physical therapy that could have been avoided.

HAVE EXERCISE, WEIGHT LOSS, OR COGNITIVE BEHAVIORAL THERAPY HELPED RELIEVE YOUR PAIN?

“It is important to include a multi-disciplinary approach to care. We have to use non-pharmacological treatments and non-opioid medications in conjunction with more traditional treatments. Using chiropractic care, nutrition, good dental health, better posture, meditation, aqua therapy, etc., can go a long way in the management of chronic pain conditions.”

But the survey found that many of those treatments are simply out of reach for pain patients because they’re not covered by insurance.

When asked if their health insurance covered non-pharmacological treatments such as acupuncture, massage and chiropractic therapy, only 7% said their insurance covered most or all of those therapies.

About a third said their insurance “covers only some and for a limited number of treatments” and over half said their insurance does not cover those treatments. About 4% do not have health insurance.   

“I tried acupuncture and massage, paying out of my pocket, but neither helped. In fact, they hurt. I tried Lyrica, Savella, and Cymbalta. No luck. I do warm water aerobics three days a week WHEN I CAN TAKE MY OPIATES FIRST,” wrote one patient.

Although the CDC didn’t even raise the subject of medical marijuana in its guidelines, many patients volunteered that they were using marijuana for pain relief and that it worked for them.

DOES YOU INSURANCE COVER ALTERNATIVE TREATMENTS SUCH AS ACUPUNCTURE, MASSAGE AND CHIROPRACTIC THERAPY?

“Alternative medicine is needed. I am a huge advocate of medicinal marijuana, in addition to opioids to treat my disease,” wrote a patient who suffers from CRPS (Chronic Regional Pain Syndrome).

“If cannabis was legal and accessible, it would greatly lessen the need for prescription pain medication,” said another patient.

“I should be able to get the proper medical marijuana legally. I have tried it from a friend and it helps tremendously. However, I will not purchase it because it is illegal. I pray every day I can get it someday,” said a patient who suffers from lupus, arthritis and other chronic conditions.

The survey found patients were evenly divided on whether they should be required to submit to urine drugs tests for both prescribed medications and illegal drugs.

"In order to receive my monthly pain medication, I must submit to a urine screen and a pill count each and every month. I must (whether they work or not) agree to have steroid injections every few months. While I don't have any problem to submitting to urine screenings or pill counts, I do not like having injections that provide no help. I am trapped playing this game,” said a patient.

“99.9% of pain patients are responsible adults but are treated like toddlers who need constant supervision. Pain patients are sicker, fatter, and poorer because they are pumped full of chemicals and steroids. Forced to be experimental guinea pigs or forced to suffer if they say NO,” said another patient.

DO YOU THINK PATIENTS PRESCRIBED OPIOIDS SHOULD BE REQUIRED TO HAVE URINE DRUG TESTS?

"As both a chronic pain patient and a provider I get to view this issue from multiple perspectives. Of course opioids aren't the first line treatment for chronic pain, and when they are used they shouldn't be the only treatment. They are one part of a larger toolkit for managing chronic pain," wrote a registered nurse practitioner.

"There are many fortunate people who are able to manage their pain without medication, or even recover from pain completely using some of the wonderful new interventions we now have available. But there are large numbers of patients out there who have tried all the other medications and dietary changes and injections and PT (physical therapy) modalities and mindfulness. And they are still left with pain that only responds to opiates."

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.

Patients Predict More Drug Abuse Under CDC Guidelines

By Pat Anson, Editor

Guidelines for opioid prescribing being developed by the Centers for Disease Control and Prevention (CDC) will worsen the nation’s drug abuse problem and cause even more deaths, according to a large new survey of pain patients. Many also fear they will lose access to opioids if the guidelines are adopted.

Over 2,000 acute and chronic pain patients in the U.S. participated in the online survey by Pain News Network and the Power of Pain Foundation. Over 82 percent said they currently take an opioid pain medication.

When asked if the CDC guidelines would be helpful or harmful to pain patients, nearly 93% said they would be harmful. Only 2% think the guidelines for primary care physicians will be helpful.

Nearly 90% of patients said they were “very worried” or “somewhat worried” that they would not be able to get opioid pain medication if the guidelines were adopted.

“Over 2,000 pain patients participated in our survey – an indication of just how seriously many of us take the CDC’s proposed guidelines,” said Barby Ingle, president of the Power of Pain Foundation.

DO YOU THINK THE CDC GUIDELINES WILL BE HELPFUL OR HARMFUL TO PAIN PATIENTS?

“We are the ones feeling the pain daily, minute by minute. We are the ones who these guidelines will affect. Even if the guidelines are not law, other agencies, providers and insurance companies will adopt them. There is already an issue with patients receiving proper and timely care across the country, and this will add to the crisis in pain care that already exists.”

The draft guidelines released last month by the CDC 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 in acute or chronic pain.  A complete list of the guidelines can be found here.

Although the goal of the CDC is to reduce the so-called epidemic of prescription drug abuse, addiction and overdoses, a large majority of pain patients believe the guidelines will actually make those problems worse – while depriving them of needed pain medication.

“I've been closely monitored by a pain management specialist and successfully taken opioids for over 10 years with no abuse or addiction issues,” said one patient. “They have saved my life, independence, and improved my quality of life and daily function. Now I'm terrified of going back to the pain I endured for years.”

“Some pain patients may turn to the streets for relief, if they can afford it,” said another.

“Attempted suicide, pain and withdrawal symptoms would be a major epidemic,” predicts one patient.

“The level of functioning afforded me through pain medication will greatly diminish or disappear, along with an unbearable increase in pain levels. I will either seek pain relief via medical marijuana or consider ending my life,” said one patient.

 “This is absurd. Why is it assumed that anyone who has a prescription for opiate medication is going to sell it or become addicted?” asked another patient.

When asked to predict what impact the guidelines will have on addiction and overdoses, over half said they would stay the same and over a third said they will increase. Less than 5% believe the CDC will achieve its goal of reducing addiction and overdoses.

"There will be a higher incidence of abuse and addiction. People will continue to find ways to get the medication that works for them. Without appropriate supervision, abuse, addiction and overdose will actually increase," said one patient.

"I have a friend who eventually became addicted to heroin when NY state made it hard for her to get tramadol. It was easier for her to get street drugs for her back injury pain," said another.

WHAT IMPACT WILL THE CDC GUIDELINES HAVE ON ADDICTION AND OVERDOSES?

"I believe the CDC should stick to their title, Centers for "Disease" Control. There are many areas of research desperately needed much more than new rules to control a doctor's ability to properly treat and manage chronic pain patients," one respondent said.

Asked what would happen if the guidelines were adopted – and given the choice of various scenarios – large majorities predicted more suffering in the pain community, as well as suicides, illegal drug use and less access to opioids. Only a small percentage believe patients will exercise more, lose weight and find better alternatives to treat their pain.

• 90% believe more people will suffer than be helped by the guidelines
• 78% believe there will be more suicides
• 76% believe doctors will prescribe opioids less often or not at all
• 73% believe addicts will get opioids through other sources or off the street
• 70% believe use of heroin and other illegal drugs will increase
• 60% believe pain patients will get opioids through other sources or off the street
• 4% believe pain patients will find better and safer alternative treatments
• 3% believe fewer people will die from overdoses
• 1% believe pain patients will exercise more and lose weight

CDC officials and many addiction treatment experts contend that opioids are overprescribed – leading to diversion and abuse -- and that other types of pain medication or therapy should be “preferred” treatments for chronic pain.

But over 58% of the patients who were surveyed disagree or strongly disagree with the statement that opioids are overprescribed. Less than 16% agree or strongly agree that opioids are overprescribed.

Many patients said they were already having trouble obtaining opioid prescriptions.

"People are UNDER MEDICATED not getting relief. I do not believe addiction is a factor, I think people are not getting what they need, period!" wrote one patient.

"It's already very difficult to get any prescription pain meds that actually help reduce pain. With these changes many will suffer. Why should people who truly have chronic pain be penalized due to others abuse of their meds?" asked another patient.

DO YOU AGREE THAT OPIOIDS ARE OVERPRESCRIBED?

"It is already difficult to get my prescriptions that I have been safely using for years. If these additional restrictions of prescriptions, need for monthly doctor visits, etc. are put into place. I will only suffer more," wrote another patient. "Legitimate pain patients are not the problem, yet are greatly impacted by guidelines such as this. I ask that the CDC PLEASE consider unintended consequences for legitimate patients before they implement these recommendations. This could be tragic."

To see what pain patients are saying about the effectiveness of therapies recommended by the CDC, click 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.