The 7 Golden Rules of Opioid Prescribing for Patients

By Jeffrey Grolig, MD, JD, Guest Columnist  

“Don’t do it!” is the advice often given to brand new physicians about whether to specialize in pain medicine. Increasing numbers of doctors are being fined, disciplined or arrested due to scrutiny caused by the nation’s opioid crisis. Every single opioid prescription, even the mildest painkiller, is being tracked, and prescription drug database searches tell the DEA and state board investigators who to watch.  

The unfortunate innocent victims of this crisis have been those legitimate patients who suffer in chronic pain, with up to 100 million in the United States alone. Each time a physician or pharmacy is attacked, thousands of pain patients must pay the price.

A pharmacy in my northern California town recently closed after the owner was charged with 200 counts of failing to properly keep records. Each count carries a $20,000 fine.

A local physician’s license was restricted for failure to warn in writing about the risks of combining sleeping pills with opioids. This family physician had already spent $56,000 in legal fees for previous documentation lapses.

A pulmonary specialist with English as his second language was arrested for prescribing codeine-containing cough syrup to four undercover DEA agents posing as patients. He is facing 20 years in prison and $2 million in fines.   

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I still accept pain patients, but my background as an attorney compels me to use “universal precautions,” something I advise every physician who prescribes opioids to do. This boils down to following what I call “The 7 Golden Rules of Opioid Prescribing.” If you, as the patient, understand that your doctor must follow these 7 golden rules, it will make it much easier for you to obtain excellent pain management, including opioids.  

I developed the 7 golden rules by analyzing the most common documentation lapses of doctors who were disciplined or prosecuted. I included them when I wrote the “Physician Primer: Prescribe Like a Lawyer” to empower doctors to think and practice like a lawyer and not lose their careers over simple documentation errors.

If you write a cover letter like the one below to your current or prospective physician, touching on each and every one of these 7 golden rules, your pain control will vastly improve, I promise. 

Dear Doctor,

#1 I have a legitimate medical reason for needing opioids. My medical diagnosis is… (be specific: examples include diabetic neuropathy, failed spine surgery, spinal stenosis, CRPS, etc.). Attached is my MRI report (or EMG, CT, X-ray, Bone Scan, lab test, etc.) proving this.  

#2 I am not now, nor have I ever been addicted to prescription medication, illegal drugs or alcohol.   

#3 I have no depression, psychosis or bipolar disorder.  

#4 I understand all the risks of opioids and related medications, as well as my options for all non-opioid alternative treatments.  

#5 I am not taking benzodiazepines and drinking alcohol.  

#6 I have attached my last 12 months of medical records (not applicable if you have been with the same physician for one year).  

#7 These records reflect that I am an honest, compliant and responsible patient.  

Respectfully,  

Pain Patient

If you do not meet these criteria, it means you are in a higher risk category and would be better managed at a university medical center or a teaching hospital. To my knowledge, the DEA or state medical board has never raided a teaching hospital or university medical center. 

The best way a patient can signal to me they are responsible and low risk is to write a letter covering each of the 7 golden rules, attached to one year’s worth of medical records. This essentially does my work for me, and it makes it easy for me to decide whether or not to accept the patient.

If your doctor still won’t budge, hand him my free “Primer Flyer,” a pamphlet that explains risk management, that’s available on my website: ThePhysicianPrimer.com.

If all else fails, have him watch my YouTube video on The 7 Golden Rules of Opioid Prescribing for Doctors. 

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Jeffrey W. Grolig, MD, JD, is a board-certified specialist in Physical Medicine & Rehabilitation. He has taught at UC Davis Medical Center in both the departments of Family Practice and Physical Medicine & Rehabilitation. Dr. Grolig has formerly worked as a licensed attorney and has authored 6 books.

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.

New Federal Task Force to Address Opioid Prescribing

By Pat Anson, Editor

The federal government is forming another advisory panel to study and develop "best practices" for treating acute and chronic pain. And for the first time, the feds are seeking nominations from the public for members to serve on the panel, who would represent pain patients and pain management experts.

The Pain Management Best Practices Inter-Agency Task Force was authorized by the Comprehensive Addiction and Recovery Act of 2016 – also known as the CARA Act – a landmark bill signed into law last year to address the nation's addiction and overdose crisis.

While much of CARA is focused on preventing and treating opioid addiction, the law also calls for the Department of Health and Human Services (HHS) to form a task force to recommend solutions to “gaps or inconsistencies” in pain management policies among federal agencies.

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Currently, the Centers for Disease Control and Prevention, Food and Drug Administration, Centers for Medicare and Medicaid Services, Department of Veterans Affairs, and the Department of Defense all have different regulations and guidelines for opioid medication.

“This Task Force represents a critical piece of HHS’s five-point strategy to defeat the opioid epidemic, which includes advancing the practice of pain management,” HHS Secretary Tom Price said in a news release.

“Top experts in pain management, research, addiction and recovery can help us reassess how we handle the serious problem of pain in America.”

The task force could have as many as 30 members representing a broad spectrum of interests in pain management, according to a notice being published in the Federal Register:

The members of the Task Force shall include currently licensed and practicing physicians, dentists, and non-physician prescribers; currently licensed and practicing pharmacists and pharmacies; experts in the fields of pain research and addiction research, including adolescent and young adult addiction; experts on the health of, and prescription opioid use disorders in, members of the Armed Forces and veterans; and experts in the field of minority health.

The Members of the Task Force shall also include… representatives of pain management professional organizations; the mental health treatment community; the addiction treatment community, including individuals in recovery from substance use disorder; pain advocacy groups, including patients; veteran service organizations; groups with expertise on overdose reversal, including first responders; State medical boards; and hospitals.

Members will also be appointed to represent Veterans Affairs, Department of Defense, Office of National Drug Control Policy, and “relevant HHS agencies.” The latter most likely includes the FDA and CDC. The Drug Enforcement Administration, an agency in the Department of Justice, will apparently not have a representative on the task force.

Pain patients and pain management experts have been poorly represented – and in some cases excluded – from previous federal advisory panels that addressed opioid prescribing and addiction. Some panel meetings were also closed to the public.

President Trump’s opioid commission, for example, includes three governors, a former congressman, and a Harvard professor who has been a longtime critic of opioid prescribing. No patients, pain management experts or practicing physicians were appointed, and the commission only heard testimony from addiction treatment advocates during its one public meeting.

That was better than the CDC, which held no public hearings while preparing the initial draft of its opioid prescribing guideline in 2015. As PNN has reported, the “Core Expert Group” and various stakeholders that advised the CDC were dominated by special interest groups and addiction treatment specialists, including five board members of Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group. Only after a public outcry and threats of a lawsuit did the agency delay the release of the guideline, seek public comment and form a new advisory panel.

Are you interested in becoming a member of the new task force on pain management or know someone who might?

Information on how to nominate individuals – including self-nominations -- can be found by clicking here. Applications are due by Wednesday, September 27. All nominations must be submitted via email to the attention of Vanila Singh, MD, Chief Medical Officer at PainTaskforce@hhs.gov.

Members of the task force who are not government employees will receive per diem pay and reimbursement for travel expenses. All task force meetings will be open to the public.

CDC Guideline: A Good Start that Needs Improvement

By Stefan Kertesz, MD, Guest Columnist

President Obama began his 2016 State of the Union address by referencing an American epidemic of opioid overdoses. He was right to do so. The Centers for Disease Control report that 2014 saw a record of 18,893 deaths related to opioid overdose, a category that includes both medications and heroin. Given a rising tide of deaths, it is only sensible to look closely at how opioids come into distribution. There is more than one path. Doctors write prescriptions, and the pills may be consumed properly or improperly. Or they can be sold, given to friends, or stolen. Heroin is incredibly cheap and potent these days. It’s often laced with other drugs and can cause overdose in ways that users can’t predict.

A major portion of the public health response has focused on doctors and their prescriptions (disclosure: I’m a primary care doctor trained in internal medicine and addictions). Most public health authorities believe a major contributor to the rising tide of overdoses has something to do with the prescriptions for opioids we write. Our tendency to write prescriptions for pills like hydrocodone or morphine rose precipitously from 2000 to 2011.

Everyone knows a story of someone who wheedles pills out of credulous physicians. Barring a few so-called pill mills (which alone cannot account for the rise in prescriptions), most doctors writing prescriptions for opioid pills do so in response to a patient with severe chronic pain. There are an estimated 100 million Americans with chronic pain, and between 5 and 8 million take opioids for that pain.

It stands to reason that among the patients who have received opioid prescriptions, surely some (or many) should not have received them. Many doctors have decided to prescribe less, starting in 2012, according to national data.

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If prescribing went down while overdoses went up these past few years, it’s fair to say that there is room for argument about precisely how doctor’s prescriptions relate to overdoses. But few would argue there is no relationship at all. Thus, great hopes are pinned on the notion that getting doctors to prescribe differently (and less) for their patients with pain will be key.

Last year the Centers for Disease Control, after consulting an extensive array of experts and interest groups, prepared a draft guideline for doctors on prescribing opioids. In December they placed notice in the Federal Register seeking public commentary. By deadline on January 13, over 4,300 comments were received.

There is a reason this document excites so much passion. In part, organizations such as the American Cancer Society project this guideline will not be voluntary, but will carry force of law.

The hope is to prevent development of addiction and overdose that devastates countless families. Yet, there are those 5 to 8 million patients who receive opioids, some of whom believe that they are at risk of losing access to a crucial medication that is helping manage their pain, improve their quality of life and overall function. As medical boards, insurers and government agencies enforce this guideline, prescribing differently from the topline recommendations is likely to become onerous, leaving many patients in the lurch.

If you listen to this conversation between this 70-year old coal miner who suffered 18 major injuries, and a chief advocate (addiction specialist Dr. Andrew Kolodny) for the reduction of opioid prescribing, you feel the tension. You will hear the distress of a man who fears being confined to bed from his pain, and the concern of an addiction doctor who believes opioid pills have done harm, not good, even perhaps to the man to whom he is speaking.

The experts convened by the CDC include many I know and respect. They have taken a fairly strong stand. They conclude that the literature shows no evidence of enduring benefit from opioids, and that measurable harms are tied closely to dose. They urge careful assessment of risk and benefit. They urge aggressive use of urine drug testing to identify patients who take opioid medication differently from intended or use illicit drugs.

In 56 pages, they say a lot more. My primary care patients include several with chronic pain, and my practice lines up pretty closely with precisely what the guideline recommends. And despite that, I feel this guideline is not yet ready, not given the power we project it to have.

For reasons I shared with the CDC, I think it reaches a bit beyond the available science in some places, neglects it in others, and misconstrues how best to translate it in the care of our patients. It risks making opioids less available to patients who are benefiting from them. It is not far from where it needs to be, but it needs improvement.

Friends, some of them national leaders in primary care, addiction and pain medicine, have urged me to publish this concern broadly.

For people interested in learning more about these concerns, I offer them in linked piece at Medium.com. I offer it to show that one can take a different stand without rejecting the science or the underlying public health commitment that I fully share with the honorable drafters of the CDC’s draft Guideline. For the readers who believe I am right, or perhaps have also misconstrued the science, I welcome your thoughts.

Stefan Kertesz, MD, is an Associate Professor at the University of Alabama at Birmingham School of Medicine. Opinions expressed are solely his own and do not represent positions of any agency of the U.S. Federal Government or the State of Alabama.

This column is republished with permission by the author. It originally appeared in Medium.com, along with the comments submitted by Dr. Kertesz to the CDC about the guideline.

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.

Montana Doctor’s License to Be Suspended

By Pat Anson, Editor

The Montana Board of Medical Examiners voted unanimously Thursday to suspend the medical license of Dr. Mark Ibsen for unprofessional conduct, the latest chapter in a three year investigation into Ibsen’s opioid prescribing practices. A final order on the board’s ruling still needs to be drafted and voted on again. Ibsen has said he will appeal the decision.

The medical board accepted almost all of the recommendations made in a proposed order by Michael Fanning, Special Assistant Attorney General to the Montana Department of Labor and Industry, but it refused to consider lengthy allegations that Ibsen has “destructive psychological and behavioral issues.”

Ibsen was one of the last doctors in Montana willing to prescribe opioid pain medication to new patients, including many who drove hundreds of miles to see him. While that made Ibsen a folk hero of sorts in the pain community, it also attracted the attention of investigators who thought he was overprescribing opioids, and raising the risk of addiction and overdose.

“Opioid deaths are frighteningly common with one source estimating one death for every 500 opioid prescriptions written in America,” Fanning wrote in his 62-page proposed order, without citing a single case where Ibsen’s prescribing practices led to someone’s death or injury.

The case against Ibsen largely centered on nine pain patients and the incomplete records he kept on their treatment.

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MARK IBSEN, MD

“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.”

Ibsen’s charts also did not include records of a written or oral contract with patients about their opioid use, which is a common requirement in pain management. Fanning said Ibsen also overlooked “red flags” in a patient’s behavior that could indicate signs of opioid abuse or diversion.

Last year a hearing officer recommended that Ibsen be put on probation for 180 days, but Fanning went much further, asking the board to suspend Ibsen’s medical license indefinitely. The board spent over seven hours reviewing the case and over 6,000 documents admitted as evidence before making its decision.  

“I just want to say that nothing has made me feel more ashamed to say that I am a Montanan born and raised than this kangaroo court in action,” said Gary Snook, who suffers from Arachnoiditis, a painful and disabling spinal cord disorder caused by botched spinal injections. He now gets medical treatment in California.   

“I am appalled by the total lack of understanding of the treatment of pain by these doctors. No wonder Montana has one of the highest disability rates in the nation,” Snook said in an email to Pain News Network.

“Overreaching is far too gentle a term for what occurred here. It felt like a witch hunt,” said Terri Lewis, PhD, a rehabilitation specialist and patient advocate.  “No doubt Dr. Ibsen, like many, has flaws, but holding this physician to a standard of perfection which exists in neither law nor practice makes no sense.  Maybe they will assign him a scarlet ‘O’ to wear on his chest.

“This is signal in the noise of our public confusion about the management of chronic pain.  This hearing process provides a good deal of insight into the conditions of care, or lack thereof, that both clinicians and patients find so challenging and threatening.”

One board member – who voted to suspend Ibsen’s license -- praised Ibsen for his compassion toward patients and said she hoped he would apply to have his license reinstated if he submits to professional oversight..

Publicity about the case and financial problems forced Ibsen last month 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.

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.”

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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.

Will CDC Guidelines Promote Addiction Treatment?

By Alison Knopf, Editor of Alcoholism & Drug Abuse Weekly

The quick answer to the question “Will treatment providers be able to treat patients coming in addicted to opioids because they have been thrown off their pain medications next year?” is no. The treatment system can’t even treat all the patients who need help now. But this question is on the minds of federal policymakers as the federal Centers for Disease Control and Prevention (CDC) works on its forthcoming guidelines for physicians on prescribing opioids, due out next January (see ADAW, Nov. 16).

While the pain community is creating the loudest noise about the forthcoming guidelines, charging that they are not addicts and don’t want to be lumped in with them, the treatment community has on the one hand seen the benefits of decreasing the amount of prescription opioids available, but also seen the downside: patients who are dependent or addicted, who cannot successfully taper off the pain medications, will switch to heroin. Many started as legitimate pain patients.

But for some, when their doctors felt they no longer needed the pain medication, or thought the patient was doctor-shopping, or simply decided to go along with the calls to reduce the amount of prescriptions for opioids, it was difficult to stop, and they sought illicit sources of opioids.

The CDC confirmed to ADAW that there will be a guideline that “addresses treatment for opioid use disorder.” The draft guidelines leaked in September specifically recommended that an opioid agonist (methadone or buprenorphine) be arranged for patients who need treatment for an opioid use disorder. The CDC said the guidelines are continuing to be revised. Below is the wording of that recommendation from the September draft:

“Providers should offer or arrange evidence-based treatment (usually opioid agonist treatment in combination with behavioral therapies) for patients with opioid use disorder.”

SAMHSA Working With CDC

But how the primary care physician determines whether a patient has an opioid use disorder is unclear. The Substance Abuse and Mental Health Services Administration (SAMHSA) expects there to be a change in prescribing practices — that’s the whole point of the guidelines. But according to Robert Lubran, director of the Division of Pharmacologic Therapies at SAMHSA’s Center for Substance Abuse Treatment (CSAT), it’s up to the physicians who are prescribing the medications to come up with a referral plan for their patients.

“I go back to what Westley Clark always said,” Lubran told ADAW, referring to the former director of CSAT. “He said the physician has to have an exit strategy for a patient he isn’t going to be prescribing opioids for anymore.” The physician has to determine if the patient is dependent on or addicted to the medication. Dependence is a normal result of regular opioid intake, addiction is pathological, but both will result in withdrawal symptoms when opioids are stopped suddenly. Someone who is dependent can be slowly tapered off the opioids and endure the craving that ensues. Someone who is addicted cannot stop and will seek opioids from another source.

“There has to be a place where the doctor can refer someone when the doctor determines that the patient can’t be safely tapered down because they are addicted,” said Lubran. A treatment provider specializing in opioid use disorders, such as an opioid treatment program (OTP) or office-based opioid treatment (OBOT), would be a good solution, he said. “We’re working with the CDC to make sure the guidelines include information on where to refer these patients,” Lubran told ADAW.

“We’re already struggling on the traditional medicine side with how a patient goes from being a pain patient to being an addict,” said Lubran. “They discharge them, but what about referrals? More states and counties need to be involved in recommendations for care,” said Lu, adding that insurance companies need to be involved as well.

Guidelines Not Mandatory

Mark Parrino, president of the American Association for the Treatment of Opioid Dependence (AA-TOD), said that as far as he knows, OTPs have not been involved in the development of the CDC guidelines. However, he expressed skepticism about the effect of the guidelines. “Will there be a reaction by physicians? Will this really change their practice patterns? Will there necessarily be a wholesale dumping of patients who are getting pain medications? I would hope not. But if that is the result, I would ask how we are going to know whether these patients will show up in treatment, or go into the street for drugs?”

Furthermore, said Parrino, these are just guidelines from the CDC. “Doctors aren’t even required to read the stuff,” he said. “They’ll issue a big press statement, yes. But it’s like package inserts. Do you really think every physician will be watching their computer for the guide-lines, saying ‘Now I need to change my medical practice?’”

The CDC itself says as much. “It is important to note that, like other CDC guidelines, including prevention and treatment of sexually treated diseases, the guidelines are intended to support informed clinical decision-making but are not mandatory (that is, physicians are not required to follow these guidelines),” according to Courtney Lenard of the CDC’s press office. The CDC’s guide-line is meant to “help primary care doctors provide safer, more effective care for patients with chronic pain” and at the same time “help reduce use, abuse and overdose from these powerful drugs,” the CDC’s press office told us last week. “The guideline is intended for primary care providers who treat adult patients (age 18 and older) for chronic pain in outpatient settings, and is not intended for patients who are in active cancer treatment, palliative care or end-of-life care.”

Asked if restrictions on prescription opioids will lead to increased use of heroin, however, the CDC continued to stick to the federal official answer, which is: No. “There is no robust evidence that recently enacted policies regarding prescription opioids are responsible for large-scale shifts to heroin,” said Lenard, adding that only 1 in 25 people who use prescription opioids nonmedically start using heroin within five years. However, she added that this “translates into a major and growing epidemic of heroin use given how widespread the misuse of prescription opioids has become.” Stopping the misuse of prescription opioids is the best way to stop the heroin epidemic, according to the CDC.

This article is republished with permission of Alcoholism & Drug Abuse Weekly, which provides news and analysis of federal and state public policy developments, private sector business developments, and provider issues and innovations in addiction treatment.

Should Johns Hopkins be Policing the Nanny State?

By Terri Lewis, Guest Columnist

I was copied a response to the recently issued document, "The Prescription Opioid Epidemic: An Evidence-Based Approach" published by Johns Hopkins Bloomberg School of Public Health. 

The 46-page document is full of pronouncements about what the proper course of action should be to rein in the abuse of opioids by people who experience unrelenting chronic pain on a daily basis.  The document is replete with terms like addict, addiction, surveillance, monitoring,  intervention, adherence, and conformance distributed across seven topical areas, all claiming to address the current evidence for the need to ramp up the nanny state:

#1: Prescribing Guidelines
#2: Prescription Drug Monitoring Programs
#3: Pharmacy Benefit Managers and Pharmacies
#4: Engineering Strategies
#5: Overdose Education and Naloxone Distribution
#6: Addiction Treatment
#7: Community-Based Prevention

Nowhere, does this document even remotely address the fact that the onset of chronic pain is often an iatrogenic event that occurs as the result of medical harm or insufficiently delivered medical care. 

Nowhere, does this document address the financial and practical impact of these pronouncements on the ability of persons who have lost everything to illness to conform to protocols that turn healthcare delivery into a policing activity.

Everywhere, these protocols engender the further victimization, the institutionalization of marginalization, and stigmatization of the chronically ill as unworthy, incapable of protecting themselves, and potentially harmful to themselves and others because of the characteristics of their illness imposed disabilities. 

Every dollar that is proposed for expenditure in this document should be going to research designed to prevent and minimize the impact of chronic pain -- not punish it.  But this document, from a major public health training institution, completely fails to address the prevention and reduction of chronic pain as a public health issue of significant importance, and is focused instead on counting adherence, conformance and compliance activities that will (a) not lead to improved personal outcomes for consumers who live with chronic pain and (b) rob consumers of precious resources with which to live. 

These pronouncements reflect an ignorance of astounding proportion in understanding who persons with chronic pain actually are and the conditions under which they are forced to live.  Who does this document serve?  Who are we trying to protect?  

I am outraged.

And then this.  Into my email came a response to this smug, sanctimonious document from a woman in California who suffers from interstitial cystitis -- acquired through medications she received after treatment for shoulder and spinal injuries at the hands of her medical provider.  It's too good not to share:

To the misguided folk at Johns Hopkins Bloomberg School of Public Health:

This is my contribution to your little Town Hall hand-wringing session.

So, I guess you are jumping on the anti-opiate frenzy bandwagon.  Just another organization that feels compelled to point at anyone who takes opiates, and call us all "addicts" and not even considering those of us who suffer from severe CHRONIC PAIN (the kind That Never Ends) due to circumstances totally beyond our control.  My pain is not caused by any flaw in my character.  People like myself who see our doctors religiously and always take our medication responsibly.  What, are you being financially rewarded by punishing us?  What did we ever do to you?  Or are you just trying to Thin the Herd?  I guess Chronic Pain Patients' Lives DON'T Matter.

I'm talking to you.  I'm one of those people, who suffer from illnesses and or injuries that have already stolen our quality of life away from us, and pain that causes as much, and sometimes more, pain than cancer.  People who suffer from pain that only opiate prescription medication can dull.  And people like you, whom I will never meet, want to take that away from me.  A patient who has NEVER EVER ABUSED HER MEDICATION.  Not ONCE.  I am a 60 year old lady who worked her entire adult life and never once did anything to invite nor cause the condition that causes me terrible TERRIBLE pain.

My pain saga started with chronic tears to both my rotator cuffs, and a herniated cervical spine.  All from a desk job involving typing and mousing and staring at a computer monitor for years and years and years.  This activity has destroyed the tendons in both my shoulders and neck and herniated my spine.  And while that pain was bad enough, I figured it would eventually end.  I never envisioned that the pain would remain after my shoulders were carved up and stitched back together.  It was during my recovery from this surgery, that I began to experience the horrors of an incurable illness known as Interstitial Cystitis.

On bad days it feels like someone is taking a blowtorch to my genitalia.   In fact, Interstitial Cystitis is considered the Third Worst Pain in all of medicine.  Imagine, if you will, the sensation of hot lava being blasted through your bladder, vagina, colon and pelvic parts.  All the time.  Having the urge to urinate every 15 minutes -- or more often than that -- on bad days.  I am basically chained to a toilet.  And because the pain is ALWAYS much worse at night, I suffer from severe insomnia.  It is impossible to fall asleep or stay asleep with pain this bad.  My urologist opined that I would be better off if I suffered from Bladder Cancer, because there is at least a chance of recovery from that illness.

The only FDA authorized treatment for this condition is Elmiron, and it doesn't work on every patient.  In fact, it only works on maybe 25% of patients who suffer from this horrible condition.  It did nothing to help me with any of my symptoms but cause my hair to fall out and raise my liver enzymes to a dangerous level.  That's all our modern medical machine could do for me medically.  They sure as hell cannot cure this illness yet.  The only thing that medicine CAN offer is pain relief.  The only chance in hell I have of ever having a life without this horrible, searing, burning, aching, stabbing pain is if The Good Lord decides to send me into remission.  All a doctor can really do for me to help me is provide me with pain relief.

The only medication I take that takes the edge off of this pain is Norco.  I tried the Fentanyl patch, but it caused me to develop an intestinal blockage.  For obvious reasons, I had to discontinue that medication.  And while I intensely dislike taking ANY medication, I dislike the awful pain worse.  I have NEVER abused my medication.  I never take more than I am prescribed.  I do everything and anything that is asked of me, whether it involves blood tests and/or pissing into a cup.

So why am I going to be punished?  Answer me that question.  I just found out that my pain medication is going to be cut drastically OR terminated at my next visit to my pain doctor, which is this Friday.  It is not being taken away because I have ever abused my medication, or lied, or deceived, or stolen, or sold it.  I can only assume that my pain doctor is just too afraid of the DEA and the paperwork headache.  It will be easier for him to just dump me as a patient, and limit his practice to injections which make him more money anyway.  Well, guess what?  Injections have never done a thing to help my pain, and I have had quite a few.  I have had TENS units, Physical Therapy, Massage and Ultrasound.  I have tried just about everything that exists to reduce the horrendous pain I experience 24/7.  The only medicine with the fewest side effects that helps reduce pain is Norco.

We are a vulnerable part of the population who are being deprived of compassionate and adequate care to help us live our lives with a semblance of normalcy.  We are being punished for the irresponsible actions of people who would be addicted whether or not it was via opioids or anything else.  All of this noise is just that:  NOISE.  Mark my words:  all this brouhaha will not make one iota of difference in the epidemic you speak of.  People who are addicts will always find a way to get high.  That is what addicts do.  However, what your actions WILL do is cause an increase in suicides of people suffering from terrible TERRIBLE pain, who can no longer get medication that enables them to have something resembling a quality of life, and be semi-productive citizens. 

Yes.  The pain of illnesses like mine can and does drive good people to commit suicide if they can't get pain relief.  Or maybe these same people turn to other drugs they would never EVER consider if they received the compassionate care we are all entitled to.  That is what you will see start to happen.  I am sure that some of this surge in heroin use is by people who are in such terrible pain that they are desperate, and their doctors will not help them because of fear of the DEA and organizations like yours.  And then what will happen?  More "meetings" and "studies" and "head-scratching" about the spike in suicides?  How can you be so obtuse?

No one is speaking up about us. No one is helping us.  Chronic pain patients are being marginalized and treated like addicts, when we are not.  We can barely function because pain robs us of the ability to function, and we are already exhausted from this daily fight.  I guess we are easy targets.  Few of us possess the strength to march on numbers in Washington or anywhere else.  I know I couldn't.  I am so ill that I can barely leave my house.

I know what happens to me when I don't take my pain medication:  I experience much more severe pain.  I don't drool, or hallucinate, or stumble, or vomit, or shiver, or do anything but just cry buckets and buckets of tears, and huddle in a corner of my bed in the fetal position with bags of ice stuffed into my underwear to try and numb the horrible, searing pain of this illness.  And I guarantee that if any of you people making these horribly unjust decisions suffered from the condition I suffer from, that you would be begging for drugs to take the pain away.  I'm willing to stake what few dollars I still possess on that fact, because guess what?  This illness has also rendered me destitute and incapable of working at my job.  I can't even sit in a chair very long because of the pain.

So, in summary, what you are doing is KILLING US.  You, and 60 Minutes, and the CDC and the DEA and every other soulless agency that is carping about this.  If I weren't so sick from this horrible illness, and what it has done to my life, I would be laughing because of the incredible stupidity being displayed by a bunch of suits I will never meet.  Dumping every single person who takes opiates into a category you call "addiction" and shoving us off in the same leaky boat.  Yes.  You are killing us.

Name withheld to protect her privacy

For the record, this person also found out last week that her beloved husband of 20 years is in the throes of stage 4 kidney failure as a result of 5 years of treatment from a physician for arthritis -- resulting in an unidentified drug-drug interaction that has, unbeknownst to the physician, destroyed his patient's kidneys because he failed to monitor his patient or pay attention to known drug-drug interactions.

So who needs to be monitoring and surveilling here?  Who?  Does the public really need protection from persons with chronic pain who can barely leave their homes?  Or do persons in pain need protection from the public purveyors of unsound, impractical, and misguided policies? 

God spare us from the nanny state.

Terri Lewis, PhD, is a specialist in Rehabilitation practice and teaches in the field of Allied Health.  She is the daughter and mother of persons who have lived with chronic pain.

This column was reprinted with permission from the author.

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.