Long Term Opioid Use May Cause Depression

By Pat Anson, Editor

Long term use of opioid pain medication raises the risk of developing depression, according to a large new study published in the Annals of Family Medicine.

Researchers at St. Louis University analyzed data from over 100,000 patients treated by the Veterans Health Administration and two private healthcare systems and found that about 10 percent of them developed depression after using opioids for more than 30 days.

All of the patients were new opioid users being treated for arthritis, back pain, headache, musculoskeletal pain or neuropathic pain, who had not been diagnosed with depression before starting opioid treatment.

"Findings were remarkably consistent across the three health care systems even though the systems have very different patient characteristics and demographics," said lead author Jeffrey Scherrer, PhD.

“In all three patient populations, longer duration of opioid analgesic use was associated with new-onset depression after controlling for pain and daily morphine equivalent doses.”

Scherrer believes the depression may be caused by changes in brain regions associated with reward and pleasure, as well as lower testosterone levels caused by opioids.  

“Patients and providers should be aware of all pros and cons before initiating a medication and our research supports discussing depression,” he said.  “In addition to common practice of screening for depression at initiation, our study supports repeated screening for depression during the course of opioid therapy. Certainly not all patients will develop depression. However new onset depression certainly complicates pain management, not to mention the burden of the disease itself. "

One of the co-authors of the study is Mark Sullivan, MD, who is a board member of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group funded by Phoenix House, which operates a chain of addiction treatment centers.

“Certainly chronic pain is associated with depression. How much of a role opioids might contribute is I still think somewhat unclear. Our population is aging and not everything is amenable to surgery or injections. NSAIDs are not without risk especially in an older population,” wrote David Smith, MD, Children’s Hospital of Wisconsin, in a comment about the study on the Annals of Family Medicine website.

“There are not other good options for pain control. For example, tramadol is a weak opioid and has a number of side effects. There is a lot more that could be done with physical therapy and exercise but by themselves they are not sufficient in many cases. Although I think we need to address the misuse of narcotics, we need to be very careful not to throw out a very useful treatment for an aging population.”

One recent study found that about one in five patients with lower back pain suffer from depression.

Another study found that opioids are significantly less effective if a patient with low back pain suffers from depression or anxiety.

CDC Still Holding Secret Meetings on Opioid Guidelines

By Pat Anson, Editor

A newly appointed advisory committee to the Centers for Disease Control and Prevention (CDC) has met twice in recent meetings that were not open to the public, Pain News Network has learned, a possible violation of federal open meetings law.

The committee of outside advisors – which the CDC calls a “Workgroup” – was appointed to review the agency’s controversial opioid guidelines, which discourage primary care physicians from prescribing opioids for chronic pain.

“Workgroup meetings are not open to the public,” said CDC spokesperson Courtney Leland in an email to PNN. “CDC anticipates the workgroup will meet four times. Two meetings have been held to date and two are scheduled in the coming weeks.”

Ironically, the opioid guidelines were put on hold and the new workgroup was appointed after widespread complaints about the CDC’s lack of transparency and secrecy in developing the guidelines. None of the agency’s prior meetings about the guidelines were open to the public either.

“It sounds like the CDC hasn’t learned what a federal advisory committee is,” said Mark Chenoweth, general counsel to the Washington Legal Foundation (WLF), a pro-business group that threatened to sue the agency for its “culture of secrecy” and “blatant violations” of the Federal Advisory Committee Act (FACA).

In November, the WLF sent a letter to CDC Director Tom Frieden warning that the agency “was required to comply with each of the numerous obligations that FACA imposes on such committees – including open all meetings to the public,” as well as publicly releasing minutes of the meetings and documents provided to advisory committees.

The new 10-member workgroup was appointed by the agency’s Board of Scientific Counselors (BSC) last week. Critics say a previous workgroup called the “Core Expert Group” had too many members biased against opioids, including one who had a financial conflict of interest. None of its meetings were open to the public.

“CDC developed its Draft Guideline with considerable input from an improperly established federal advisory committee,” said WLF chief counsel Richard Samp. “Any new, properly constituted committee should be directed to take a fresh look, rather than simply being asked to judge the existing proposal. In the absence of such a fresh look, any final guidance document issued by CDC will be tainted inescapably by the major role played in its formation by an illegally constituted federal advisory committee.”

Unlike the previous workgroup, the new advisory committee has broader experience in pain management, pharmacy, and primary care practice. One member is a longtime advocate for pain patients. Two were members of the original Core Expert Group, and two others were part of a "Stakeholder Review Group" that also advised the CDC. A complete list of members for the new workgroup can be found here.

The workgroup’s two meetings were held via conference call and an online meeting platform, according to Leland. The group’s chair is expected to present a report to the BSC on January 28. That short schedule suggests the new panel is only reviewing the work of the old one and is not initiating guidelines of its own.

Further information about the January 28 conference call, which is open to the public, can be found here. Ninety minutes have been set aside for public comments, with a maximum of two minutes per speaker.

Online Public Comment Period Ends

Meanwhile, today was the deadline for the public to submit online comments about the CDC’s draft guidelines. Over 4,000 comments have been received, many opposing the guidelines as being too restrictive, while others wish they were stronger.

The passionate and sometimes painful stories shared by commenters demonstrate the toll opioids can take, both when they are denied patients who need them and when they are abused.

“My son Luke was polite, popular, multi-sport, all-star athlete,” wrote Stacy Watson, who said her teenage son started taking opioids for a sports injury, but became addicted to painkillers and then heroin.  “Seemingly overnight, he became one of the hundreds of thousands of teens in our country addicted to prescription (Rx) painkillers. His life CHANGED & SO DID OUR FAMILIES. He went from being the person I described above to a stranger; the addiction devoured him and our family. It has been heartbreaking. He is 28 years old and now sits in a prison cell.”  

“My wife suffered from chronic pain. It was so heartless that you tied the hands of her doctors to prescribe the pain medication that she needed,” wrote Charles Martens. “You were not the ones that watched her suffer day in and day out until the day she died. Have some mercy and knock this restrictions crap off. Let the Doctors be Doctors for gosh sake.”

You can read more comments here.

Although the CDC’s voluntary guidelines are meant for primary care physicians, many experts say they will quickly be adopted by many prescribing doctors, medical societies and regulatory agencies. As Pain News Network has reported, under a recently enacted federal spending bill the Veterans Administration will be required to adopt them.

As many as 11 million American take opioids daily for chronic pain. Many pain patients report they already have trouble obtaining opioids or getting their prescriptions filled by pharmacies.

The Danger of Treating ER Patients as Drug Seekers

By Emily Ullrich, Columnist

Recently the news has been covering the story of Barbara Dawson, a Florida woman who was arrested after she refused to leave a hospital that would not treat her for abdominal pain. While being escorted from the hospital in handcuffs, she collapsed in the parking lot and later died.

For many of us who are chronic pain patients, this kind of treatment is all too familiar. More often than not, when doctors see that we are on pain medications, they automatically assume that we are drug addicts and that we are “drug-seeking” just by going to the hospital. 

Personally, I have so many of these experiences, that I couldn't possibly list them all. Last year, I was hospitalized for upper abdominal pain. I had been to the emergency room earlier that week for the same issue, so the doctor told me he was admitting me, “Because otherwise you'll just keep coming back.”

On my first day after being admitted, I was given no pain control and was taken off of my muscle relaxers. I got no sleep. I was told there was absolutely nothing wrong, and they couldn't find any reason to keep me. I overheard my nurse speaking to another nurse, saying that my liver enzymes were in the thousands.

I questioned the doctor, who was in the process of discharging me, about my liver enzymes. He asked how I knew about this. I claimed that I had asked the nurse, because I could tell he was angry and I didn't want to get her in trouble, although I had every right to know this potentially life threatening information. At that point, he felt pressured to keep me and try to figure out what was wrong.

Because they weren't treating my pain, my blood pressure was high and I was at risk of heart attack or stroke. Instead of treating my pain, they put me on two different blood pressure medications.

At one point, I was taken to another floor for an abdominal scan. I was in so much pain I was trembling. A nurse said, “So, you're an addict. When's the last time you used?”

I was dumbfounded. I replied that I was absolutely not an addict and asked why she said this.

“Oh, maybe I used the wrong terminology,” the nurse said. “You've been on pain meds for a long time, right?”

I said yes and she said, “Well, okay. You can't deny that, then. I just used the wrong word, sorry.”

I was suddenly acutely aware of the frequent misuse of the term “LTDU” (long term drug user), which is applied to many of us who take pain medications.

Upon transfer from my room to the exam room, I was given my medical records to hold. I opened and read them. Not surprisingly, I saw multiple remarks about “drug seeking behavior.” The nurse told me I was not allowed to read my own records. I said, “I'm allowed to hold them, but not read them? They're mine!”

“Yes. Well, it's hospital policy,” she replied.

I was hospitalized a second time last year, for the same issue, plus bradycardia. The admitting doctor was nasty to me, saying,  “I am admitting you, but you will not be given one drop of pain medication other than Tylenol.”

Eventually, I was given a small dose of pain medication, but I was still trembling and vomiting the pain was so bad; yet the doctors refused to raise my dosage. I called the nurse, who got me a patient controlled pain pump. This was slightly more helpful, but when I let them know that the dosage was not controlling my pain, they took it away entirely. The gastrointestinal team came in and talked to me, but never came back.

I was discharged within three days, with no answers. Over those three days, I was told by one nurse, “If you call me every time it's time for your medication, you are called a ‘clock watcher,’ which we consider a form of drug-seeking.”

I was again gobsmacked. Later, another doctor came in and said, “We have no reason to believe you're in pain.”

I said, “Why would I go through all of this just to get a mediocre amount of pain medicine?! I'm not drug-seeking, I'm relief-seeking!”

The doctor said, “Well, there's not much difference.”

During this second stay, I had to call the charge nurse and often the patient advocate, just to get minimal pain control. Every time, I pointed out their sign, which said “If your pain is not relieved within 30 minutes, please tell your nurse. Our goal is to treat patients with respect and dignity.”

I pointed this out so many times that instead of heading their own policies, they literally changed the sign! They came in and screwed a new sign to the wall, which mentioned nothing about pain care or patient rights.

In August of 2014, before the two events described above, I had my gallbladder removed. I was already on pain medications for chronic pain and I expressed concern to the doctor that my pain after surgery would not be adequately controlled. He said, “Don't worry. You'll get your precious Percocet. One prescription, that's it!”

I was hurt and offended that he was treating me this way, as though I would have an organ removed just to get pain medicine! But, it got worse. As I was waking up from surgery, my eyes were not yet open, and I heard one nurse say to another, “The doctor said she's going to claim she's in pain, but just get her out of here.”

I opened my eyes and declared, “I heard you!” They both grew silent, and pretended that never happened.

This past August, on my 40th birthday, I landed in the ER again. Again, I had severe upper abdominal pain and was told that, “Nothing is wrong, and you will not be given narcotic medication.”

I asked the doctor to look at my liver enzymes. He saw that they were extremely elevated, and gave me a dose of pain medicine. The next thing I knew, the admitting doctor was in the room, telling me that I was “getting what I wanted” and I was going to be admitted. She introduced herself, and then proceeded to verbally steam roll me, telling me that I would not receive pain medications while I was in “her hospital.” She told me that I was already “unnecessarily on pain medicines.”

I questioned her, but she curtly cut me off. “I see that you have a bunch of 'garbage pail diagnoses,'” she said.

I was furious. I asked if she even knew what some of them where, and if she knew better than the doctors from “her” hospital who had made those diagnoses. She rolled her eyes, and continued with her speech on the lack of treatment I would receive while admitted.

I said, “So, I'm being admitted for pain control and further testing, but I won't receive pain control beyond the medications I currently take?”

“That is correct,” she said, her snide attitude seething. I told her that it was my 40th birthday and the last place I wanted to be was in the hospital, but I really wanted some answers. She just stared at me. I decided that I would take my chances, and go home. If this was any indication of the abusive treatment I was in for if I stayed, I wanted no part of it.

I was discharged with a diagnosis of intractable abdominal pain. Three weeks later, I looked at my online medical records, and noticed that my diagnosis had been changed to “narcotic withdrawal.”

Four years ago, I developed a severe kidney infection. I was deemed a drug-seeker by numerous ER's, without any testing for my symptoms. Eventually, a doctor took me seriously, but by then, I was developing sepsis, and my life was in danger. You can read the full story here.

Even during this horrible incident, I was taken off my regular pain medication and was given a tiny dose of IV pain medicine, equivalent to about half of my home medications. The nurses watched me writhe and cry in pain all day and night, until I spent two days in and out of consciousness. They argued with the doctor on my behalf and I argued with him, but nothing changed. I was still supposedly “drug seeking.”

I could go on and on, but I think by now you get the point. Our lives are in danger, on the off chance that doctors may accidentally give medicine to someone who is trying to get high. This is absolutely unacceptable.

Also, I'm not sure how much validity is behind their theory. It seems to me that if someone wanted to get high, buying drugs off the street would be much easier and cheaper. Like most of us who take pain medication to treat our pain, I do not feel any euphoria, just a little relief.

How is this kind of behavior in line with a doctor's Hippocratic oath to “First, do no harm?” It seems the oath is now “First, judge and abuse.”

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

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

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

FDA Committee Approves New Drug Implant

By Pat Anson, Editor

An advisory committee to the U.S. Food and Drug Administration has approved a new drug delivery system to treat opioid addiction – an implant that could potentially be used to treat chronic pain and other diseases that require steady doses of medication.

The FDA’s Psychopharmacologic Drugs Advisory Committee voted 12 to 5 in favor of the new drug application for Probuphine, a tiny implant about the size of a matchstick that contains buprenorphine, a drug already used to treat addiction that currently only comes in pills and oral film strips. The FDA is expected to make a final decision on Probuphine next month.

“You can never be 100 percent sure of anything,” said Sunil Bhonsle, CEO and president of Titan Pharmaceuticals (NASDAQ: TTNP), which partnered with Braeburn Pharmaceuticals in developing the implant. “The data clearly shows that this product can be of benefit to this patient population. And we hope the FDA will approve it.”

COURTESY BRAEBURN PHARMACEUTICALS

Once implanted under the skin, Probuphine is designed to deliver a steady dose of buprenorphine for six months. Buprenorphine is a weaker opioid that’s long been used as an addiction treatment drug sold under the brand name Suboxone. While it reduces cravings for opioids, buprenorphoine can also be abused and is prized by addicts as a street drug that can ease withdrawals pains from heroin.

The advantages of an implant are many. The dosage is controlled and there’s hardly any risk of abuse, diversion, or accidental overdose. Users also never have to remember to take a pill.

Probuphine’s path to the marketplace hasn’t been a smooth one. Braeburn and Titan were stunned in 2013 when the FDA denied approval of the implant and asked for a new clinical study proving Probuphine’s effectiveness in treating opioid addiction.

The results of a six month, double-blind clinical trial on 177 patients, found that the implant was more effective than buprenorphine film strips in treating addiction. The implant’s insertion and removal were "generally well tolerated," although nearly one in four patients had a "mild" adverse event at the implant site.

Several members of the FDA's advisory committee, including its chairwoman, voted against approval, saying there was not enough evidence of Probuphine’s effectiveness after six months.   

"New treatment options for the millions of patients and their families suffering from opioid addiction are desperately needed, and we appreciate the Committee's comprehensive review of Probuphine," said Bhonsle. “There are many applications for this technology and I think the medical community is now more in tune with looking at long-term delivery technology in the chronic disease setting. So I think it’s probably accurate to say the time is right to expand the use of these technologies to different settings.”

Bhonsle says Titan is already looking at ways the implant can be used to treat Parkinson’s disease and hypothyroidism, adding that chronic pain could also be treated with an implant.

“Clinical studies will need to be done to establish the ability, but the drug levels can certainly be delivered that are going to be beneficial for treating chronic pain,” he told Pain News Network.    

Survey Finds Most Doctors Favor CDC Guidelines

By Pat Anson, Editor

Chronic pain patients and their doctors appear to be on opposite sides of the fence when it comes to controversial guidelines for opioid prescribing being drafted by the Centers for Disease Control and Prevention (CDC).

An email survey of over 1,600 doctors found that 87 percent of them “would welcome and use” the CDC guidelines, which discourage primary care physicians from prescribing opioids for chronic pain. The survey was conducted by SERMO, a social network for healthcare providers.

Less than six out of ten doctors (59%) believe opioids should be used to treat chronic non-cancer pain. About half said they knew someone personally who has suffered from addiction to opioids.  

In personal comments, several doctors said they believed some patients were “doctor shopping” for opioids.

“It is often impossible to know whether a patient is drug seeking, and it's hard to deny them pain meds simply because my gut tells me so,” wrote one oncologist.

“I am frequently approached by patients with ‘acute’ complaints of pain. Since these patients are usually unknown to me, it is difficult to tell if these are truly ‘acute’ issues versus drug seeking,” said an urgent care physician.

“While there are some patients that need pain medications there are several that have now become addicted and I think physicians need more training in not only how to prescribe pain meds properly but also how to cut back appropriately as well,” wrote an internal medicine specialist.

“Physicians are the gateways to drugs. They have the prescription pad and ultimately they are the ones who make the call. They should be at the frontline of this epidemic and adequate education is required,” said a neurologist.

Asked what they thought was the “most important tactic" to curb opioid abuse, this is how doctors voted:

• 43% of doctors support broader use of prescription drug monitoring programs (PDMPs)
• 20% support more education for physicians on proper opioid prescribing
• 14% support increased access to addiction treatment programs
• 14% support more education for patients at risk of addiction
• 7% support increased access to Naloxone, a drug used to reverse the effects of an opioid overdose
• 2% support needle exchange programs

A large majority of doctors (82%) favor PDMP’s, but only 63% said they were registered with their state’s PDMP.

A survey of over 2,000 patients by Pain News Network and the Power of Pain Foundation found very different attitudes about the CDC’s opioid guidelines. Nearly 90% are worried they won’t be able to get opioid pain medication if the guidelines are adopted. A similar number believe the guidelines discriminate against pain patients and will be harmful to them.

How the CDC Misclassifies Opioid Overdoses

By Denise Molohon, Guest Columnist

I think the minute anyone without bias or personal agenda began reading through the CDC's proposed guidelines for opioid prescribing, they must seriously question many things.

Chief among them, the highly suspect "low to very low quality" evidence being presented to support their "strong recommendations," but also their dangerously skewed data; which ultimately could leave millions of chronic pain sufferers critically ill, without sound medical treatments, and with little to no quality of life.

In a recent CDC Morbidity and Mortality Weekly Report (MMWR) on drug and opioid overdose deaths, I found myself doing the exact same thing -- seriously questioning the data. In 2014, the report found that 28,647 people died of drug overdoses involving opioids, including heroin, a 14 percent increase over the previous year. 

However, the CDC admits in the MMWR, that "some overdose deaths may have been misclassified and the data has limitations.” I wondered how much was misclassified? Exactly what data has limitations and why?

I believe the American people have a right to transparency and full disclosure, not flawed data that is often presented in a confusing manner, such as the following qualifiers in the MMWR:

“At autopsy, toxicological laboratory tests might be performed to determine the type of drugs present; however, the substances tested for and circumstances under which the tests are performed vary by jurisdiction.”

“The percent of overdose deaths with specific drugs identified on the death certificate varies widely by state.”

"Approximately one fifth of drug overdose deaths lack information on the specific drugs involved. Some of these deaths might involve opioids."

 “Heroin deaths might be misclassified as morphine because morphine and heroin are metabolized similarly, which might result in an underreporting of heroin overdose deaths.”

 If heroin deaths are being misclassified as morphine, which results in the "underreporting" of heroin overdose deaths, then wouldn't the opposite also hold true? That there is "over-reporting" of morphine deaths, which are then misclassified as prescription opioid deaths? 

According to the Washington Post, CDC Director Tom Frieden admitted some heroin overdose deaths were counted twice!

Another egregious misclassification, which I find grossly unjustified, is the following:

"Historically, CDC has programmatically characterized all opioid pain reliever deaths (natural and semisynthetic opioids, methadone, and other synthetic opioids) as ‘prescription’ opioid overdoses."

On the surface this statement doesn't appear too concerning. Until you begin to take a closer look at what has been happening over the last 3-5 years with heroin and illicit fentanyl overdose deaths, and how both illegal and legal opioids have been lumped together into one category.

All opioid pain reliever deaths are counted as “prescription” opioid overdoses. Why?

“Natural opioids” includes those heroin deaths that were misclassified as morphine related overdose deaths, which no doubt contributed in some degree to that 14% increase in opioid overdose deaths in 2014.

But how many of these heroin deaths were misclassified? We may never know. The DEA reported last year in its National Heroin Threat Assessment Summary that, “Many medical examiners are reluctant to characterize a death as heroin-related without the presence of 6-monoaceytlmorphine (6-MAM), a metabolite unique to heroin, but which quickly metabolizes into morphine.  Thus many heroin deaths are reported as morphine-related deaths."

illicit fentanyl seized in ohio

“Synthetic opioids” includes not only prescribed fentanyl, which is a potent pain reliever, but illicit fentanyl overdoses,  which have skyrocketed over the last two years. Because most medical examiners and coroners did not routinely test for fentanyl in 2014, many illicit fentanyl/heroin overdose deaths were also probably counted as prescription opioid overdoses. 

Medical examiners and coroners are just now beginning to test for fentanyl because of the sharp rise in overdose deaths in the U.S. and Canada. Both the CDC and the DEA issued advisories about illicit fentanyl overdoses last year, but we don’t know exactly how many deaths there were.

Why is the data about opioid overdoses so flawed and what is the government doing about it?

A federal agency called the Substance Abuse and Medical Health Services Administration (SAMHSA) brought together groups of experts four times in 2003, 2007, 2010, and again in 2013. All agreed uniform standards and definitions were needed for classifying opioid-related deaths. Guidelines were developed in July 2013 by SAMHSA to provide uniform standard procedures for medical examiners, coroners and other practitioners.

The CDC is not only aware of these guidelines, but it recently recommended medical examiners and coroners in all states implement them “to ensure death reports are complete and accurate.”

“It is especially important to include the word ‘fentanyl’ on the death certificate when the drug is a contributing cause of death,” the CDC said in a Health Advisory distributed on October 26, 2015.

Why fentanyl? Based on reports from states and drug seizure data, a substantial portion of the increase in synthetic opioid deaths appears to be related to increased availability of illicit fentanyl, which is often combined with heroin or even sold as heroin.

David J. Hickton, U.S. attorney for western Pennsylvania and co-chair of the Justice Department's National Heroin Task Force, told the Washington Post that "fentanyl and more potent heroin appear to have contributed to the 2014 spike in fatal overdoses."

According to the DEA's National Heroin Threat Assessment Summary, the overwhelming number of fentanyl overdose deaths are not attributable to pharmaceutical fentanyl but rather illicit fentanyl.

“There have been over 700 overdose deaths reported, and the true number is most likely higher because many coroners’ offices and state crime laboratories do not test for fentanyl or its analogs unless given a specific reason to do so,” the report warns. "While pharmaceutical fentanyl (from transdermal patches or lozenges) is diverted for abuse in the United States at small levels, this latest rash of overdose deaths is largely due to clandestinely-produced fentanyl, not diverted pharmaceutical fentanyl."

Note that the DEA is making a critical distinction between an illegal drug and a legal prescription drug. Why isn’t the CDC doing this?

In my opinion, for the CDC to lump all opioids together as "prescription" opioids or as "pain relievers" shows a highly dangerous bias, an unwillingness to address the soaring number of heroin and fentanyl overdoses, and a lack of competence in taking a responsible leadership role.

If the CDC can’t be counted on to clearly report on the data, sources and causes of overdose deaths, how can we trust their opioid prescribing guidelines?

Denise Molohon was disabled with Adhesive Arachnoiditis after multiple spinal surgeries.

Denise is a strong supporter and patient advocate for ASAP, the Arachnoiditis Society for Awareness & Prevention. She and her family live in Indiana.

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.

Doctor's License May Be ‘Suspended Indefinitely’

By Pat Anson, Editor

The Montana Department of Labor and Industry is recommending that the medical license of Mark Ibsen, MD, be suspended indefinitely by the state Board of Medical Examiners for unprofessional conduct.

Ibsen has been at the center of a long-running debate in Montana over the prescribing of opioid pain medication. State investigators say Ibsen overprescribed opioids, kept poor records and risked the health of his patients, while supporters say he is one of the few doctors left in the state willing to treat chronic pain patients. The Board of Medical Examiners is scheduled to meet Thursday to decide Ibsen's fate.

“Opioid deaths are frighteningly common with one source estimating one death for every 500 opioid prescriptions written in America,” wrote Michael Fanning, Special Assistant Attorney General to the Montana Department of Labor and Industry.

But in his 62-page proposed order, Fanning dos not cite a single case where Ibsen’s prescribing practices led to someone’s death. Instead he focuses on Ibsen’s alleged emotional instability and poor record keeping.

“Dr. Ibsen’s charts did not contain satisfactory evidence that he attempted more conservative care short of chronic opioid therapy,” Fanning wrote. “While the charts include occasional references to mental or behavioral health and rare references to interventional services, there was no consistent evidence that the more conservative option had been attempted and failed before continuing opioid therapy.”

Fanning also said Ibsen overlooked “red flags” in a patient’s behavior that could indicate signs of opioid abuse or diversion, such as multiple requests for early refills of prescriptions, seeing multiple doctors, and multiple lost medications. Ibsen’s charts also did not include records of a written or oral contract with some patients about their opioid use.

Fanning’s proposed order also includes references to “erratic and unprofessional behavior” by Ibsen reported by a former spouse and medical associates. One psychological profile of Ibsen said he suffers from bipolar disorder and narcissism, and that Ibsen “fails to accept responsibility, projects blame onto others and believes that others have conspired against him.”

mark ibsen, md

The state medical board is under no obligation to accept Fanning’s recommendation of indefinite suspension of Ibsen’s license. Last year the board rejected a proposed order from a hearing officer that Ibsen be put on probation for 180 days.

"I don't think I've had fair treatment in three years with the board of medicine. They've rewritten the evidence and are redefining reality," Ibsen told Pain News Network. "I haven't been treated fairly at all. They continue to accuse me of horrible and heinous things for people that I've helped. And there's been no one harmed by anything that I've done."

Ibsen has become something of a hero to pain patients, not only in Montana, but around the country. Many have trouble finding a doctor willing to prescribe opioids.

"I've become quite an advocate for the downtrodden pain patients. I promote medical marijuana as an exit strategy for people on opiates. I may be upsetting the status quo," said Ibsen.

Publicity about his case and financial problems recently forced Ibsen to close his Urgent Care Plus clinic in Helena. Ibsen was arrested in November, not for opioid prescribing, but for a misdemeanor domestic assault charge. He has pleaded not guilty.

Under Fanning's proposed order, Ibsen would be eligible to have his medical license reinstated, provided he was under "perpetual monitoring" by a professional assistance program. Ibsen says he will appeal if his license is restricted.

Exercise Best Prevention for Low Back Pain

By Pat Anson, Editor

Regular exercise significantly reduces the risk of developing low back pain, according to new research that found other therapies such as ergonomics, back belts and shoe inserts do little to prevent it. Lower back pain is the world’s leading cause of disability.

Researchers at the University of Sydney in Australia analyzed nearly two dozen back pain studies involving over 30,000 people to see which therapy works best in preventing low back pain. Their study, reported in JAMA Internal Medicine, found “moderate quality evidence” that exercise or a combination of exercise and education work best.

“For exercise to remain protective against future LBP (low back pain), it is likely that ongoing exercise is required. Prevention programs focusing on long-term behavior change in exercise habits seem to be important,” wrote lead author Daniel Steffens, PhD, of the University of Sydney. “The available evidence suggests that education alone, back belts, shoe insoles, and ergonomics do not prevent LBP.”

Over 80 percent of us suffer acute low back pain at least once in our lives, and about half will experience a recurrence within one year.  

The researchers estimate that exercise results in a 35 percent reduced risk of developing low back pain within a year; while exercise and education reduces the risk by 45 percent.

“If a medication or injection were available that reduced LBP recurrence by such an amount, we would be reading the marketing materials in our journals and viewing them on television. However, formal exercise instruction after an episode of LBP is uncommonly prescribed by physicians,” wrote Timothy Carey, MD, and Janet Freburger, PhD, of the University of North Carolina at Chapel Hill, in a commentary also published in JAMA Internal Medicine.

“This pattern is, unfortunately, similar to other musculoskeletal problems in which effective but lower-technology and often lower reimbursed activities are underused. In one study, fewer than half of the patients with chronic LBP or neck pain who were surveyed received exercise instruction despite a good evidence base for its effectiveness.”

Carey and Freburger said physicians and professional societies need to start working together to establish exercise guidelines for low back pain, and health insurance companies “will need to be convinced” about the benefits of exercise for them to start covering it. 

A 2015 study by BMC Health Services Research found that early physical therapy for low back pain significantly lowers healthcare costs by reducing the use of expensive treatments such as spinal surgery, injections, imaging and pain medication.

Are Chronic Fatigue Sufferers Afraid of Exercise?

By Pat Anson, Editor

Research published in a respected British medical journal is fueling a new debate over exercise and whether it helps or hurts people suffering from chronic fatigue syndrome.

Researchers at King’s College London reported in The Lancet Psychiatry that most chronic fatigue sufferers have “fear avoidance beliefs” that exercise will only make things worse.

Chronic Fatigue Syndrome (CFS) -- also known as Myalgic Encephalomyelitis (ME) –  is characterized by severe tiredness, disturbed sleep and a weakened immune system, along with muscle and joint pain. CFS is a comorbid condition often shared by fibromyalgia and other chronic pain sufferers.

The King’s College study followed 641 CFS patients who were given cognitive behavioral therapy (CBT) and graded exercise therapy that included light exercises such as walking. CBT encourages patients to think differently about their symptoms.

When used together, researchers say the two therapies helped about a third of the patients recover from CFS, primarily by reducing their fear that exercise and activity would only worsen their symptoms.

“Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity,” said Professor Trudie Chalder of King’s College London. “Clinically, the results suggest that therapists delivering CBT could encourage more physical activities such as walking, which might enhance the effect of CBT and could be more acceptable to patients.”

Many CFS sufferers were outraged by the study and the way it was reported by the news media, feeling it added to a stereotype that they were lazy couch potatoes and malingerers.

“This article has made me so angry. This journalist should live my life for a few days and then maybe they’d reconsider what they wrote,” said one woman in an online comment to a Daily Mail story.

“Sometimes having a shower is like climbing a mountain,” wrote another CFS sufferer. “Until one of these ‘experts’ has had to literally crawl back to bed shaking and ill from just trying to clean their teeth I don’t think they’ll ever be able to understand what we go through.”

“Given the number of athletes and sportspeople diagnosed with this neurological disease, trying to pass it off as 'fear of exercise' is laughable. And lazy!” wrote another reader.

An American neuroscientist also weighed in, disputing the theory that exercise is an effective treatment for ME/CFS.

“Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS,” wrote Mark VanNess, PhD, a professor at the University of the Pacific in a letter published in the ME blog, Just ME. “Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial.

“For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain.”

Some skeptics in the medical community refuse to accept ME/CFS as a real disease, although it was classified as a neurological disease by the World Health Organization in 1969.

According to the National Alliance for Myalgic Encephalomyelitis, nearly 1 million people in the U.S. and 17 million worldwide have ME.

My Life with CRPS

By Chrystal Weaver, Guest Columnist

I have been suffering from Complex Regional Pain Syndrome (CRPS) Type 2 for nearly six years. I first got this disease as a result of a botched back surgery called a kyphoplasty.

The bone cement they used was too thin in consistency, which allowed it to travel to my epidural space and kill off most of the axons in my nerves; which in turn caused my left foot and ankle to be paralyzed with indescribable burning pain, electric shock pain, bone crushing pain, and pins and needles pain.

It’s been nearly six years of living hell.

I was 46 when this happened and I was working as a CPA in Florida. At the time, we had pain management clinics in abundance and doctors were not afraid to prescribe opiates. They worked with you to get your dose to the point where it was effective for your individual needs, without causing side effects like over sedation.

The dose of medication I was on took my pain down from a 9 or 10 to a bearable 3 or 4 level. I was able not only to continue to work, but to attend my son’s baseball games, go to the beach with him, take him on vacations and be an active mom.

Then when Florida got all the bad press due to pill mills, and the DEA and state law enforcement cleared out the bad operators, good doctors also got caught up in the net. This had a profound effect on doctors who were using pain medication in good faith and a “chilling effect” occurred. Pain management doctors left the field in droves. Those who remained were unwilling to maintain me on the regime I was taking and that was working for me.

chrystal weaver

CRPS has the nickname “the suicide disease” for a very good reason. It is not curable and there is no effective treatment for the disease. Any medication, narcotic or non narcotic, is prescribed “off label” because there is not one medication approved for CRPS by the FDA. I tried spinal cord stimulation, nerve blocks, Prialt, antidepressants, anti-seizure medication, and acupuncture. I couldn’t bear for my foot or lower leg to be touched, so massage was not an option. I even had high dose ketamine infusion treatment at the University of Miami. All to no avail.

Because of the aggressive law enforcement tactics that shut down the bad operators, the pendulum has swung the other way to the extreme. There were huge unintended consequences in Florida’s efforts to shut down the pill mills. I was taken down to about 30% of the old dosage I was on, which allowed me to work and be a great mom. The new dosage never gets my pain below a level 6.

I ended up losing my job due to poor performance and had to apply for Social Security disability after a 25 year career in the accounting field. I stopped going to baseball games, that my son wants desperately me to see, but I just cannot go. I am now home-bound and cannot perform the activities of daily living. If I did not have a 12 year old son, the pain has been so unbearable I would have taken my life by now.

I do not exaggerate when I say this pain is like being a prisoner of war. It can take the most mentally sound, happy and stable person, and make that person wish that they would not wake up. This should not be happening in the most advanced country in the world.

The saddest part of all is that the government actions did not even solve the problem of people abusing drugs and overdosing. The people that were abusing narcotics have switched to the much easier to obtain and much cheaper heroin. The population that has been greatly harmed by what the government has done is the legitimate chronic pain patients in Florida and indeed all over the United States.

The heavy handed tactics used by our government gained nothing. The people who want to abuse drugs have turned to a much more dangerous substitute, where they have no clue regarding the potency of what they are putting in their bodies, nor do they have any idea of the contaminants they are ingesting. We have traded a decrease in prescription opiate abuse for increased heroin abuse, while leaving legitimate chronic pain patients severely undertreated and in many cases untreated for their pain.

Every person is unique. Cookie cutter recommended dosages do not work for human beings. There will always be outliers on both sides of the bell curve. Some people do well with small doses of opiates and some people require higher doses to bring their pain down to a manageable level.

I understand that the CDC’s prescribing guidelines are meant for primary care physicians. However, it is highly likely that pain management doctors will follow the guidelines as well. Even if a pain specialist were to prescribe doses above the guidelines for patients with diseases that are debilitating painful, it would be impossible to find a pharmacy willing to fill the prescription. We already are having a very real problem being able to fill prescriptions now.

I cannot imagine how much more difficulty chronic pain patients will have accessing their medication should these guidelines go into effect. I cannot even count how many times I have been forced into withdrawal after spending over $150 on taxi fare going from pharmacy to pharmacy, only to be told that they do not have the medication in stock or that they no longer carry that medication. I am a single mother. I have no family living that can help me take care of my son when I lay on the couch in level 10 pain from CRPS and the pain of withdrawal. No one should be made to suffer like this. No one.

I don’t enjoy taking narcotics. I purposely had my baby at home with midwives and no pain medication or epidural because I did not want unnecessary medical interference with what is a natural occurrence. I can take pain. It was my first and only child.

I explored the possibility of getting my left leg amputated below the knee if that would free me from the pain of this disease. But it does not take away the pain and CRPS does spread. It is now in my right foot and lower leg. 

So there is nothing more that I can do medically to treat the pain effectively, except for taking opiates at the dose and combination that was effective for me. But I have no way of obtaining that same dose and combination of short and long acting opiate medications that allowed me to live at a level 3 or 4 on the pain scale. My son needs his mother and for the last 5 years I am still breathing, but I certainly am not living.

I also want to emphasize that there are numerous diseases and conditions that are not malignant, but are just as painful if not more painful than cancer pain. CRPS is listed as a rare condition by the National Institutes of Health, but there are many more orphan and rare diseases whose primary feature is severe debilitating pain with no cure and no real effective treatment.

Alarmists cite an increase in opiate prescriptions without putting it in the proper context. Most baby boomers are in their fifties or sixties now and people are living longer due to medical advances. Sun Belt states like Florida have a higher retirement population than northern states do. Pain was undertreated in the early 1990s before pain was classified as the fifth vital sign.

Alarmists also point to the number of deaths from opiates being over 16,000 annually. But they have no way of knowing if that person intended to take their life or if the death was accidental. 16,000 deaths does not an epidemic make. I shudder to think of the real epidemic that will occur if these arbitrary guidelines are adopted by the CDC. Wounded veteran suicides will dramatically increase, along with suicides from 100 million chronic pain patients in this country. Some will begin to abuse alcohol to try to get relief. I’m certain that some will be willing to break the law and turn to the streets for heroin if they happen to know where they can obtain it.

Pain should be managed as we manage diabetes in this country. You are prescribed the number of units you need to get your blood sugar as close to 100 as possible without causing your blood sugar to drop too low. Pain has been subjective until the advent of the functional MRI. Pain doctors can verify that you are in pain using fMRI.

We would never lock up 100 people in prison if one of them were guilty of murder just to punish the one murderer. But this is precisely what has happened in the treatment of chronic debilitating intractable and incurable chronic pain. In order to protect a small portion of the population from themselves, our government has cast 99 innocent people in prison in order to punish the one murderer.

Drug addicts will always be able to obtain their drug of choice, while chronic pain patients languish in their homes unable to participate in life; waiting and wanting to never wake up because the pain is going to be the same as the day before, just like the movie Groundhog Day.

I was very active and enjoying my life, my career and my son until one medical procedure changed my life forever. Your life can change in a blink of an eye. A loved ones’ life can change in the blink of an eye. Every human being deserves to have their pain managed appropriately. Anything else amounts to torture.

Chrystal Weaver has submitted these comments to the CDC. The public comment period on the CDC's opioid prescribing guideline continues until January 13th.

You can make a comment by clicking here.  The draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

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.

CDC Holds First Public Hearing on Opioid Guidelines

By Pat Anson, Editor

After months of controversy over its guidelines for opioid prescribing, the Centers for Disease Control and Prevention (CDC) held its first true public hearing today on the proposed guidelines – which many pain patients fear will make opioid pain medication much harder for them to obtain.

The CDC planned to implement the guidelines this month with little public input, but was forced to change course after widespread criticism about its secrecy and lack of transparency during the drafting of the guidelines, which would discourage primary care physicians from prescribing opioids for chronic pain. As many as 11 million Americans use opioids for long-term chronic pain.

“We have heard some concerns about the process. We’ve done a lot, but want to be sure there will be no concern about the final guidelines when released,” said Debra Houry, MD, director of the CDC's National Center for Injury Prevention and Control, which is overseeing development of the guidelines.

“As a part of our response, we are proposing the establishment of a workgroup under the BSC (Board of Scientific Counselors) to review the guidelines and the feedback we have received from stakeholders, peer reviewers, and importantly the public. We want to ensure that this workgroup includes diverse perspectives of experts, stakeholders and consumers invested in reversing this epidemic, while cognizant of the need for safe and effective pain management.”

The CDC nominated a workgroup of ten health care experts to review the guidelines and advise its Board of Scientific Counselors, most of whom have expertise in workplace injuries, but little experience in pain management. Unlike a previous workgroup known as the “Core Expert Group,” the new workgroup has broader experience in pain management, pharmacy, primary care practice and patient advocacy:

• Erin Krebs, MD, MPH
• Mitchell H. Katz, MD
• Mark Wallace, MD
• Gregory Terman, MD, PhD
• Katherine Galluzzi, DO
• Christina Porucznik, PhD, MSPH
• Penney Cowan, American Chronic Pain Association
• Chinazo Cunningham, MD, MS
• Anne Burns, RPh
• Traci Green, PhD, MSC

Krebs and Porucznik were members of the original Core Expert Group, while Cowan and Terman were part of a "Stakeholder Review Group" that also advised the CDC.

The BSC approved the CDC's nominees with little discussion, although it encouraged the workgroup to add additional members, if needed. Only one member of the BSC voted against the nominations.

No members of Physicians for Responsible Prescribing (PROP) were nominated by the CDC to be part of the new workgroup. As Pain News Network has reported, five PROP board members advised the CDC during the initial drafting of the guidelines. PROP is funded by Phoenix House, which runs a chain of addiction treatment centers, and critics had complained the PROP members were biased and had conflicts of interest against the use of opioids.

Several pain patients said they wanted to see more patients in the workgroup. Penney Cowan of the American Chronic Pain Association was the only one nominated by the CDC.

“I want this panel and this group to have patients. You need to hear our side,” said Diane Gracely, who said she has been a chronic pain patient for 46 years. “The goal of the CDC is to reverse the prescription drug epidemic. I think this is inhumane to us chronic pain patients. The voices of chronic pain patients need to be heard by the CDC and the DEA. We need you to listen to us. You’re pushing more patients to the street for drugs and causing more suicides.”

The new workgroup is expected to meet at least four times to review the guidelines, a process that could delay finalizing the guidelines for several months.

“The guidelines will be an important and essential step in reversing the prescription drug epidemic, said Houry. “Given the lives lost and impacted every day, we have an acute sense of urgency to issue guidance quickly.”

That urgency was also stressed by CDC director Thomas Frieden, MD, who spoke briefly by telephone during the hearing.

“We know we don’t have ideal evidence, but we also know that we can’t wait,” said Frieden, who claimed prescription opioids were “fueling an increase in heroin use” and that their benefits were “largely unproven and uncertain.”

“Addressing the prescription drug overdose epidemic is one of CDC’s top priorities. Overprescription of opiates for pain is the key driver of this epidemic and we believe the epidemic can be reversed. Key areas will be to improve prescribing for both pain and for addiction. There are definite, often fatal risks, including both addiction and death with prescription opiates.”

The public can still comment on the CDC's prescribing guideline until January 13th. You can make a comment online by clicking here. 

The draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

My Journey From Doctor to Chronic Pain Patient

By Lisa Kehrberg, MD, Guest Columnist

I'm a 41-year old family practice physician living in the Chicago area. I worked in private practice directly after residency and then worked for the Veterans Administration in an outpatient clinic the remainder of my short career.

Much of my work involved treating patients with chronic, non-cancer pain. Little did I know at the time, this was more of a training course for me to become the very patient I was treating. 

In 2011, my 39-year old big brother died suddenly and unexpectedly at home. He was a criminal defense attorney living in our home state of Oklahoma at the time. His death was shocking since I was unaware he had any serious medical conditions. Getting his medical records was even more shocking. His physical symptoms were attributed to psychological causes. 

His death was the worst life situation I had experienced. I'd never felt such emotional pain. I also began to have physical symptoms. I had bouts of severe abdominal pain, headaches, vomiting, dark urine, numbness in my hands, and fatigue. 

In 2013, when I was the same age my brother died, I had very severe abdominal pain with vomiting and foot drop. This time the pain was too intense to tolerate and I went to an emergency room. I was admitted and had a CT scan, endoscopy, and a colonoscopy. All of these tests were unremarkable, yet I was getting sicker each day.

Initially, when speaking to the hospital doctors involved with my care, I assumed the diagnosis would be found and I'd receive appropriate care. The first surprise was, after admission, they refused to treat my excruciating pain. I was doubled over, rocking, vomiting, and crying with the worst pain of my life. Worse than labor, appendicitis, or anything else I'd experienced. It was a hot, burning pressure that was like lava and hot razor blades filling up my abdomen. My stomach distended to appear 9 months pregnant.

LISA KEHRBERG, MD

Doctor after doctor walked in and witnessed this and continued to refuse ordering opioids. After all the tests were complete and normal, the doctors were very rude to me and implied this was all a psychological problem.

I was shocked and in disbelief. How could my colleagues not believe me? Did they think I was lying? And why would I lie? I had a busy life with two young children, a husband and worked full time as a physician. I had rarely gone to doctors in my life and only taken opioids after the few surgeries I had.

Clearly the doctors didn't listen or believe me, because on day 3 of the first hospital stay, I was discharged home, doubled over in the most excruciating pain ever. I was unable to tolerate even liquids and vomited continuously. At home I never even made it upstairs. I lay on my couch getting sicker and sicker. I was getting short of breath and having palpitations. My pulse was very rapid and blood pressure high.

I went to a different hospital emergency room within 24 hours of discharge from the first hospital. After about a week of tests, the doctors were able to diagnose me with a rare genetic metabolic disease called acute intermittent porphyria.

Before figuring out the cause of my pain, doctors at this second hospital not only listened to me, but believed me. My pain was very aggressively treated the entire time I was there. I was believed, as all patients should be. Time wasn't wasted on judging and all energy went towards helping me.

Eventually I received hemin, which is an infusion used to treat porphyria. I was diagnosed and received treatment just in time and fortunately I survived, unlike my brother. 

Learning to Live with Porphyria

Because the disease had became so severe before being diagnosed and treated, I have permanent nerve damage. I have severe abdominal pain from visceral neuropathy every day. I have also had back-to-back porphyria attacks since 2013. Porphyria attacks are known to be excruciating and a patient experiencing one will normally be hospitalized and get IV morphine.

What happens to patients like me who have back-to-back attacks without a break ever? Do I live in a hospital? I spent the first 3 months of this ordeal hospitalized the majority of the time. I began to wonder if I would spend the rest of my life as an inpatient. But I wanted to live and go back to my life somehow.

The only way to stay out of the hospital is palliative care; treating the symptoms at home. I've been unable to work and spend most of my time too sick to leave my house or do much. The disease is very unpredictable, so it's impossible to plan much. At least I can see my children every day. I survive by putting my energy into loving my children and taking things hour by hour. Just making it through one day is a challenge. 

One of the most common causes of death from porphyria is suicide. This isn't surprising. I always wonder how people who are sick like me keep surviving. To live in continuous excruciating pain every minute of every day with no end in sight is quite the challenge. Now imagine living this way with no pain medication. I will tell you that it's not possible. The pain from this disease if left untreated is not compatible with life.

At that first hospital, I tried to find a window I could open and jump from. I felt like I was on fire. I wasn't depressed. I was in pain. How would someone like me exist in life without pain medication? I couldn't. Impossible. It would be like performing abdominal surgeries on patients without anesthesia. It's so beyond my comprehension how the medical community can have such little empathy for those who are sick, in pain, and disabled. 

My palliative care doctor is wonderful. He has compassion and listens to me. He believes me and doesn't judge. He has saved my life and the reason I'm able to attempt living life and not continuously be readmitted to the hospital.  

Last summer I went to a new doctor who specializes in pain and is a physiatrist. I was hoping he may have some ideas. He listened to my story, then said he couldn't help me since I took opioids. He told me my pain must be "emotional.” He said patients without cancer should not be taking opioids chronically.

I asked him what someone like me can do. I explained it’s like having a blow torch in your colon all of the time and how do you exist that way? He shook his head and rolled his eyes. I left crying.

I still cry when I think of that interaction. How could a physician, a person supposedly trained to offer healing and compassion, treat any human being this way? If I was healthy and was working in the same hospital as this doctor, he would be inviting me to lunch. But because I met him while sick and disabled, I'm judged. No compassion, much less treatment. 

Now that I've entered the world of chronic pain, I've had the opportunity to talk to hundreds of patients suffering like me. The majority have uncontrolled pain. They are forced to jump through many hoops each month just to get the medication needed to offer a little relief. I've talked to many who plan suicide someday, because they are unable to get appropriate pain management. This isn't depression. It's pure physical torture. I can't imagine people needlessly dying because they are unable to get medication to ease their suffering. Medication that's available. These people have children, are someone's child, have siblings, friends, etc. 

Physicians see a patient for 10-15 minute appointments and don't understand that the person’s pain continues after that office visit. Physicians who think opioids shouldn't be prescribed for chronic non-cancer pain are wrong. Ask these same doctors how they plan to treat the pain and you learn there is no plan.

I suspect these doctors don't understand the concept of continuous pain. If a doctor refuses to treat a patient’s chronic pain and that patient commits suicide from pain, then somebody should be held accountable. This is criminal and completely preventable. 

I'm saddened to see what's happening with the CDC's opioid prescribing guidelines. I would really like the CDC to suggest how to treat my severe back-to-back porphyria attacks. Too many doctors are being investigated for opioid prescribing. This is meant to scare doctors not to prescribe. Doctors should be receiving training on how to prescribe opioids and treat chronic pain patients. Doctors who treat chronic pain patients are saving lives everyday. They should receive only praise.

Lisa Kehrberg, MD, is a family practice physician who specialized in pain management. You can read more about Lisa at the American Porphyria Foundation’s website.

Lisa is also featured in this report on Acute Intermittent Porphyria:

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.

Spine and Hip Fractures Raise Risk of Chronic Body Pain

By Pat Anson, Editor

Breaking a bone in your spine or hip may be so traumatic that it doubles your chances of developing chronic widespread body pain such as fibromyalgia, according to a large new study by British researchers.

The study, published in the Archives of Osteoporosis, utilized an existing health database of over half a million adults to investigate associations between fractures of the spine, hip or upper and lower limbs, and the development later in life of chronic widespread body pain. Researchers at the University of Southampton also considered the possible effects of other factors, including diet, lifestyle, body build, and psychological health.

They found that men and women who had a spine fracture and women who had a hip fracture were more than twice as likely to experience long term widespread pain than those who did not have a fracture.

"The causes of chronic widespread pain are poorly characterized, and this study is the first to demonstrate an association with past fracture. If confirmed in further studies, these findings might help us to reduce the burden of chronic pain following such fractures," said lead researcher Nicholas Harvey, Professor of Rheumatology and Clinical Epidemiology at the University of Southampton.

"Chronic widespread pain is common, and leads to substantial health related problems and disability. Past studies have demonstrated an increased risk of chronic widespread pain following traumatic events, but none have directly linked to skeletal fractures."

Physical and emotional traumas have long been identified as risk factors for chronic widespread pain. For example, people involved in motor vehicle accidents are at greater risk of developing fibromyalgia, and rates of chronic widespread pain are known to increase after major disasters such as a hurricane or earthquake. Until now, there was no evidence that bone fractures could trigger such a response.

“Interestingly, the associations appeared strongest for fractures at the hip and spine, compared with fractures in the upper or lower limbs,” wrote Harvey. “High levels of morbidity and decreased survival following a hip and spine fractures is well documented, as are the potential changes in body shape, such as kyphosis, leading to pain and respiratory difficulties following vertebral fracture.”

Data for the research was collected from the UK Biobank study, which maintains records on almost everyone who utilizes the UK National Health Service.

8 Tips for Living with Chronic Pain

By Ellen Lenox Smith, Columnist

Getting a diagnosis of chronic pain or any condition that will be with you for the rest of your life is heartbreaking and overwhelming. But when the dust has settled, you have mourned your old way of life and begun to accept the new life you will have to adjust to, there are things you need to think about to make the rest of your journey more productive and peaceful.

 1. End anger and redirect

It is so easy to get stuck feeling, “Why me?” or “What did I do to deserve this?” It takes courage and strength to turn this around, put a smile on your face, and instead learn how to cope with what you have been given.

Awhile back, a doctor’s letter was posted online on what it is like to deal with a patient who has a chronic problem that will never get better. It  was an amazing insight into what goes through a doctor’s mind. They go into medicine to help others and people like us come to them that don’t fit into that box.

Remember, they are human and it will bother them not to be able to fix you. Their compassion is what we need. When a doctor shows through his words and actions they’re trying to find solutions for me, I come home grateful that they care. We can't expect the medical field to fix the impossible - but we also have to live with hope and not give up.

     2. Prepare for appointments

When you go to a doctor’s appointment, we all know there is usually very limited time and if you are not careful, you’ll forget to ask things that are important. Trying to call the office after and asking for an answer to those questions later can be an annoyance for them and is preventable.

Try to go to the appointment prepared. Living with a complicated condition, you owe it to yourself to  be prepared so you stay on point with what needs to be accomplished. To help get ready:

• Keep a list at home before the appointment and jot down things that pop into your mind that you want to address and then take that list with you.
• If you have a lot to cover, consider making a second appointment to cover the rest.
• Arrive with your medical cards and co-pays.
• Have a list of your current medications, dosages and supplements.
• Have a list of any medications you have reacted to.
• Have contact information of other doctors treating you.
• Have a list of past surgeries and important tests and the date and location of where they took place.

I keep my medical records on file so I can refresh it with information such as new medications, tests, surgeries, etc. and make sure I keep a copy in the car in case of emergencies.

3. Be willing to think out of the box for solutions

As you accept a long term health issue, another thing you want to consider is keeping an open mind. New ideas, tests, treatments are always happening. Try to think out of the box and if something can’t hurt you but just may help you, consider giving it a try!

4. Learn to put things to rest that are out of your control

You are already fighting with your emotions coping with a chronic condition. At some point, it is helpful to learn to let things go that are just out of your control. You didn’t ask for this condition, so why remain angry?

Your life will never be the same, so try to find peace and redirect towards more reasonable and productive activities. Maybe you had to step away from your career, but there could be something new you can take on to supplement your income. Or maybe you can find a good opportunity to advocate to help others coping with a similar condition.

5. Patience and more education

We have to learn to accept, although it is frustrating, that not all doctors can possibly know how to address all of our difficult conditions. Take this issue and help to make the changes needed. Consider speaking out by educating those that are trying to help you and those that have no knowledge. Possible suggestions:

• Take copies of helpful information to hand to them and ask them to read
• Ask to speak to staff, young medical students, nursing students, or physical therapy students
• Set up awareness tables at local events
• Write letters to the editor at local and national newspapers
• Call your congressman for suggestions
• Set up a pain awareness event to help educate others and bring in a guest speaker or panel forum

Be proactive and help with the much needed education, so the next person in line with what you are facing has an easier road to follow!

6. Start a support group to help others – not to just sit and complain

Along with educating the medical field, you also need to think about a support system that can help others like you in the community. We have set up a site where we list willing doctors that will take our difficult cases, brought speakers into our support group, and shared with each other to try to soften the journey we are on.

Try to prevent the group from using it as a format to complain and whine, but instead use it to educate and help direct each other.

7. Prepare for a hospital emergency

This topic was approached by Barby Ingle in a recent column, Power of Pain: Making a Hospital Stay Easier.  I encourage you to read it. There were many helpful tips suggested to prepare for the possibility of an emergency visit and also for a planned surgery.

We are responsible to know about us and share our information, so think to prepare this while you are alert and able to be as complete as possible. And share with someone where you keep this list. I always keep a copy in the car to be safe!

8. Be grateful to those that reach out and try to help

A person living with chronic pain becomes a host of many issues and that can be overwhelming for others too. So when someone reaches out and cares about you and tries to help in any capacity, remember to count your blessings.

We have all experienced some close friends, family and even medical personnel that have chosen to step away instead of embracing us. It is painful to experience. So when you meet anyone who is kind to you, remember to focus on that and try to let go of the hurt from the others.

We don’t need to add any more stress to our lives, feeling let down and disappointed by those others. And believe me, it is easy to write this and harder to follow. Look and treasure those that come into your life due to your circumstances and try to not look back!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen 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.

The CDC and Profit Driven Drug Testing

(Editor’s Note: As part of its draft opioid prescribing guidelines, the Centers for Disease Control and Prevention (CDC) recommends that physicians “use urine drug testing before starting opioid therapy and consider urine drug testing at least annually to assess for prescribed medications as well as other controlled prescription drugs and illicit drugs.”  Mark Collen is an expert in this field and has submitted the following to the CDC.)

By Mark Collen, Guest Columnist

There are a number of conflating factors which have led to the CDC‘s recommendation for urine drug testing (UDT) in pain management -- none of which have to do with quality patient care. These include the federal government‘s complicity in the overprescribing of drugs, the unethical marketing of OxyContin by Purdue Pharma, the profit motive which drove drug testing patients in pain, and physicians‘ fears and inability to effectively treat pain.

We live in a drug addled society with Americans consuming record amounts of prescription drugs, including opioids. In other words, American healthcare providers are exceptional at writing prescriptions. Someone needs to tell them to, “Just say no.”

The pharmaceutical industry‘s direct-to-consumer advertising (DTCA) has driven demand for drugs and has contributed to the escalating cost of prescription medications. Both Congress and the FDA are largely responsible for this overprescribing public health issue since they have allowed DTCA to exist and spread.

What has not been investigated is the influence the incessant drug ads have had on the American culture and more importantly, the American psyche in terms of one‘s views on drug use, prescription or otherwise. Almasi and colleagues write, “DTCA pushes a ‘Brave New World‘  where if anything unpleasant should somehow happen, why, there‘s always [the sedative] soma to give you a holiday from the facts.” DTCA may influence the abuse of opioids and other drugs.

The pharmaceutical company Purdue Pharma was responsible for one of the most deceptive marketing campaigns in history with their medication OxyContin, a timed-release oxycodone. Art Van Zee writes, “A consistent feature in the promotion and marketing of OxyContin was a systematic effort to minimize the risk of addiction in the use of opioids for the treatment of chronic non–cancer-related pain.” As a result, OxyContin became the poster boy for prescription drug abuse and Purdue was fined $600 million to settle criminal complaints. That has had little impact on the Sackler family, Purdue‘s owners, with Forbes estimating their worth at $14 billion.

Although Purdue is not completely responsible for the current opioid abuse epidemic, they certainly have played a meaningful role. In addition, a congressional investigation suggested that the pharmaceutical industry has promoted opioid sales through a number of organizations including the American Pain Society and the American Academy of Pain Medicine, both of which write treatment guidelines. 

As opioid abuse and overdose deaths began to rise, so did the drug testing industry within pain management. Drug testing labs used a similar strategy as the pharmaceutical industry in promoting their wares and money was used as an incentive to drug test. 

In my 2012 article entitled, “Profit-Driven Drug Testing,” I presented Medicare data which showed a meteoric rise in drug testing:

“A deeper examination finds that between 2000 and 2009, the total number of CLIA-waived drug tests paid for by Medicare and conducted at physicians‘ offices increased approximately 3,172,910%; with 101 tests conducted in 2000 and 3,204,740 in 2009. Furthermore, during that same time period and within the specialty of anesthesiology, CLIA-waived drug tests increased 63,687,900%.”

The annual cost of drug testing in pain management is estimated at $2 billion per year. Unfortunately, that may be a gross underestimate since no study has ever evaluated the indirect costs of patient harm or harming the therapeutic patient-provider relationship—likely the most important aspect of pain management. A November, 2014 article in the Wall Street Journal reported that some physicians are making more money from drug testing patients than treating them.

Not unlike big pharma, there appears to be a dearth of integrity in the drug testing industry. Millennium Health, the largest drug tester in pain management, was recently fined $256 million by the U.S. Department of Justice and then filed for bankruptcy. This led to the discovery that the founders took $1.3 billion out of the business in 2014.

Ameritox, the second largest drug tester, actually paid physicians to drug test their patients, and as a result was fined $16.3 million by the Justice Department. Calloway Laboratories is yet another drug testing lab that was prosecuted and it is going out of business.

This author asked Debra Maul, a whistleblower in the laboratory industry, for her comment on UDT in pain management for this paper. Debra wrote, “Personally, I believe it‘s all about the money. When I entered the laboratory business in 2003, it was very difficult to get physicians to test their patients. In 2007, when Millennium entered the industry with the POCT (point of care tests) business model, pain doctors significantly increased their patient testing, I believe, because they could make money on in-office testing. New labs were popping up everywhere promoting this business model.”

She continued, “If you look at the information the WSJ obtained from CMS regarding Medicare reimbursements for UDT, reimbursements for simple UDTs grew significantly from 2007 until reimbursements were cut in 2010. Then in 2011 and 2012, high tech drug testing took a big jump, I believe, due to laboratories promoting in-office analyzers and other high-tech testing equipment to doctors, so they could continue billing for UDTs. It will be interesting to see what happens with in-office testing and the entire UDT market, with the significantly reduced reimbursements this year.”

What follows is a list of drug testing labs and the amount they were reimbursed by Medicare for urine drug testing in 2012. These numbers come from Medicare‘s website and were provided by Debra Maul:

• Millennium: $109,031,768
• Ameritox: $99,553,258
• Aegis: $36,140,368
• Alere: $16,937,116
• AIT: $13,845,880
• Dominion: $12,551,313
• Calloway: $6,918,972

To complicate matters, healthcare providers do a poor job at treating chronic pain and opioids may not be the best choice for the long-term treatment of chronic, non-acute, non-malignant pain. Moreover, insurers have been known to reimburse for pain medication and not physical therapy. It is likely that a number of clinicians prescribe opioids because they don‘t know what else to do, and then perform random drug tests in hopes of mitigating any damage they may cause, but it does not work. There is a great need to develop and test cost effective, alternative interventions to pharmacotherapy for the treatment of chronic pain and illness in the primary care setting.

The overriding factor in this historical perspective is the consistent and negative impact industry has on medicine and in this case, pain medicine. A good example of how close the drug testing industry gets to individuals who write guidelines, please go to this link and note the presenter is the lead author of the CDC guideline (Dr. Deborah Dowell) and a conference sponsor is a drug testing lab (Ameritox). 

There is no question that industry has a negative influence on medicine. Stamatakis and colleagues write, “The industry has created means to intervene in all steps of the processes that influence healthcare research, strategy, expenditure and practice. These include evidence base production, evidence synthesis, understanding of harms issues, cost-effectiveness evaluation, clinical guidelines formation, healthcare professional education and direct influences on healthcare professional decisions.”

Urine drug testing in pain management costs an estimated $2 billion per year and there is no proof of efficacy. Moreover, it may cause patient harm and harm to the patient-provider relationship and thus increase healthcare costs even further. 

The desire for profits likely started and maintains UDT in pain management along with fear. Fear of prosecution has been attributed to the proliferation of drug testing by doctors treating chronic pain. Goldberg and Rich write, “This singular focus strongly suggests purposes beyond ensuring quality patient care, such as fear of regulatory scrutiny and potential legal liability.”

The CDC has turned a blind eye to a number of important issues regarding UDT in pain management, including its constitutionality and the fact that it was likely driven by profits. Group think can negatively influence treatment guidelines and that is likely to blame for the CDC urine drug test recommendation. Giving a person with pain a “choice” to either submit to a drug test or not receive pain medication is really the option to either submit to a search or suffer, and that is coercion. It exemplifies patriarchal medicine at its worst and is the antithesis of patient-centered care. 

James L. Madara, MD, CEO of the American Medical Association, was quoted as saying about the CDC guideline, "The guidelines and supporting discussion are devoid of a patient-centered view and any real acknowledgment or empathy of the problems chronic pain patients may face."

The CDC should not recommend UDT as part of the current guideline since there is no proof of efficacy, it may be unconstitutional, and was likely driven by profits and nurtured through fear. Furthermore, it is very expensive and may cause harm to the patient and patient-provider.

Mark Collen is an independent scholar and patient advocate. He serves on the editorial board of the Journal of Pain & Palliative Care Pharmacotherapy, and has peer reviewed manuscripts for journals including The Patient: Patient-Centered Outcomes Research, The American Journal of Pharmacy Benefits, and The Clinical Journal of Pain. 

Mark is also the founder of PainExhibit.org, an online art exhibit from artists with chronic pain, which seeks to educate healthcare providers and the public about chronic pain through art, and to give a voice to the many who suffer in silence.

This column is an abbreviated version of the comment Mark has submitted to the CDC. The full version of Mark’s comment can be read here.

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.