Chronic Pain Disease and the Opioid Crisis: Myra Christopher Changing the Narrative

If you are like me, you are upset by the reporting of the opioid crisis by mainstream media. I have found myself screaming at the television because of the skewed reporting. Make no mistake, there is an opioid crisis and it breaks my heart, but how in the world will we ever get those addicted the right treatment if we don’t look at the problem with eyes wide open? How can we blame and abandon people living with incurable diseases that keep the body at constant war with homeostasis because of the disease process that potentiates the disease of chronic pain?

“We must have balanced policy—policy that addresses two public health issues—untreated and inappropriately treated chronic pain and the opioid crisis—without unintentionally harming one patient population or the other. To get there, we MUST also have balanced media coverage.”

~Myra Christopher, Director of the Pain Action Alliance to Implement a National Strategy (PAINS, an initiative of the Center of Practical Bioethics)

Maybe you have read some of my blogs or visited my website where I share information on my personal opportunities as participant in PAINS and PAINS-KC. One of the pleasures of my own advocacy is getting to know and meet with Myra Christopher and the many other advocates and chronic pain citizens who share my journey. Following is Myra’s voice published in the PAINS Member Update, October 17, 2017.

Changing the public narrative about chronic pain as a disease

By Myra Christopher

Sunday night, I watched 60 Minutes on CBS as they interviewed Joe Rannazzisi, former Deputy Director over Diversion at the Drug Enforcement Administration (DEA). Rannazzisi was portrayed as a “whistleblower,” and he blamed drug distributers, unscrupulous physicians, and members of Congress for fueling the opioid crisis. The week before, NBC did a week-long series on the opioid crisis, and the week before PBS did one also.  I could go on—week by week by week—there is not a major news outlet (print, blog, television, radio, or web) that I could not list as well.

Before proceeding, I need to make two disclosures:

·        I have met and worked with Joe Rannazzisi.

·        We have worked with the DEA closely in the past—with Rannazzisi’s predecessor and colleagues at the DEA for whom I have great respect.

In 2008, we worked with the DEA, the National Association of Attorneys General, and the Federation of State Medical Boards to measure the impact of physicians diverting prescription pain medication. That study was published in the journal Pain Medicine (Vol. 9, No.6). I tell readers this to assure you that PAINS is very concerned about the opioid crisis and respects the role of law enforcement in protecting the US population from illicit drugs AND assuring that an adequate supply of medications is available to maintain the health and well-being of all Americans. My concern is about the irrefutable lack of media coverage of a related but separate public health issue, i.e., inappropriate and untreated chronic pain management.

On Friday, October 13, PAINS hosted a roundtable in Washington, DC, that included top officials in the federal government, leading pain care providers, people living with chronic pain and their advocates, academics and a handful of media representatives to discuss the need for more and better reporting on the “chronic pain epidemic” and the unintended consequences that pain sufferers are experiencing related to federal policy attempting to contain the opioid epidemic and the media frenzy around it. This is critically important because it is our view that media shape public perception and public perception leads to votes, which leads to public health policy – interestingly the foundation of the argument made by Joe Rannazzisi in his 60 Minutes interview.

·        For years, PAINS and others advocating for better chronic pain care have called for “balanced policy.” More than a year ago, PAINS decided to move upstream with our No Longer Silent initiative that led to last week’s meeting in DC. We must have balanced policy—policy that addresses two public health issues—untreated and inappropriately treated chronic pain and the opioid crisis—without unintentionally harming one patient population or the other. To get there, we MUST also have balanced media coverage.

“If it bleeds, it leads!” is an adage often repeated about media coverage. Granted, the chronic pain crisis is not as “sexy” as the opioid epidemic. However, both of these issues are critically important to our society’s health and well-being.

I will be honest that there are many days I feel pretty discouraged about ever accomplishing our goals, then I see a report like this one that appeared on the front page of the Worcester, Massachusetts paper which highlights the plight of Lauren Deluca and quotes PAINS Advisory Committee Member, Cindy Steinberg, who also lives with chronic pain. I encourage you to read this article and ask you to share it with your friends and colleagues via social media, email, carrier pigeon!

[Insert from Telegram.com, Worchester, Massacusetts]

“Ms. Steinberg noted that legitimately prescribed painkillers weren’t the main source of the opioid crisis. The majority of fatal overdoses were associated with illegally obtained substances.”

SHARE

Many with chronic illness denied prescriptions in fight against opioids 

by Susan Spencer 

http://www.telegram.com/news/20170923/many-with-chronic-illness-denied-prescriptions-in-fight-against-opioids

We will ask you to do the same with the report from last week’s No Longer Silent meeting when it is published in mid to late November. Until then, let me share just a few “take-aways” from that meeting:

Improving chronic pain care in America will require culture change. More specifically:

·        Changing the public narrative about chronic pain as a disease

·        Removing the stigmatization of those who live with chronic pain and those who care for them

·        Better education of physicians, nurses AND patients

·        Reimbursement models that support comprehensive chronic pain care, not just prescription opioids, interventional procedures and surgeries

·        Better data and more research

It’s a tall order but what one of my colleagues calls “worthy work.”

Comprehensive chronic pain care will improve the lives of millions of Americans, save billions of dollars and reduce opioid prescribing.

My conclusion

Will people be left to chew off their limbs like wild animals to escape pain? Will we continue to read about suicides because of untreated or undertreated pain? Will the public continue to blindly trust those in authority who have a political agenda? Can we make informed decisions based on unfair, unbalanced reporting? Are we ready for the consequences of staying silent? Your voice is only a click away.  Please join the PAINS Project initiative...

No Longer Silent!

Additional Reading:

About Myra Christopher

Patient Powered Research Network Pain Action Alliance to Implement a National Strategy in Kansas City (PAINS-KC)

The Symposium "Patients as Teachers," "Clinicians as Learners," a Synopsis

In healing,,Celeste 

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All blogs and comments are based on the author's opinions and are not meant to replace medical advice.  

Sensitivity Irrelevant to Chronic Pain Says PROPS Doc

This blog is based on the New England Journal of Medicine article.

Intensity of Chronic Pain — The Wrong Metric? 

by Jane C. Ballantyne, M.D., and Mark D. Sullivan, M.D., Ph.D.

I left a comment at the NE Journal of Medicine website, and I responded to Pat Anson’s editorial at the Pain News Network. 

   © by Jen Jasper in Broken Body,

   Wounded Spirit: Winter Devotions

Ballantyne and Sullivan: “Opioids are a case in point: they have good short-term efficacy, but there is little evidence supporting their long-term benefit.”

To say there is “little evidence supporting the long-term benefit of opioids for managing pain” is simply not true. There are plenty of us who are able to function better because our pain is managed with opioids. You simply do not hear about them because good news is no news. Maybe you meant to say there are few studies. For which I reply, “Where is the EVIDENCE that long-term opioid treatment doesn’t work for managing for chronic pain?”

Ballantyne and Sullivan: “But is a reduction in pain intensity the right goal for the treatment of chronic pain?” 

I doubt few chronic pain patients, if any, expect their pain to be completely alleviated regardless of the treatment pathway. But they do expect reduction in intensity. Patients with this goal are far wiser than you are.

Whether pain is acute or chronic, it is a symptom. Assessment for location, onset, duration, character, AND intensity of any symptom is considered the standard of care for good reason. I hope I don’t have to explain why.

People experience chronic pain for two reasons, the underlying cause is untreatable, and/or misfiring in the brain causes pain to persist that otherwise wouldn't. Our brain extrapolates information and responds to chronic pain differently, but it is still pain. So, I ask Dr. Ballantyne and Dr. Sullivan, “Do you seriously believe assessing pain intensity is not important?” If you truly disagree with your peers on this, you are breaching the standard of care. You might want to think about this too editors and publishers of the New England Journal of Medicine. Is the message of bias against a certain patient population the one you want to send?

Ballantyne and Sullivan: “Patients who report the greatest intensity of chronic pain are often overwhelmed, are burdened by coexisting substance use or other mental health conditions, and need the type of comprehensive psychosocial support offered by multimodal treatment approaches.”

Often? I disagree. As part of a citizen’s leadership group of chronic painpatients, I see these people, I am one of these people, and you are way off base. When you make such statements, YOU become part of the problem.

I agree that people who live with chronic pain can feel overwhelmed. I am feeling overwhelmed reading this article. Why don’t you ask the pain doctors who include this aspect of their care for their opinion? Sure, we experience situational depression and anxiety, just LIKE YOU DO! But you are describing people with addiction, very real, but needing a different treatment, also woefully unavailable. Why should I even have to ask, “What does addiction have to do with pain intensity?”

Addiction is not the same as tolerance.

Ballantyne and Sullivan: “Multimodal therapy encompasses behavioral, physical, and integrated medical approaches.”

It does take a multimodal approach to manage chronic pain. The pain patient certainly knows that better than you do. We have resorted to, and been the victim of, charlatans that claim they have a cure. I have found meditation to be helpful with coping, but that doesn’t cure the conditions that cause my pain. Ask how many of us  keep several ice packs on hand for fear we won’t have enough. Ask us how many times we have been blistered by a heating pad because that was still less pain. Ask us how many use ointments, OTC products, TENS units or are willing to have electricity delivered to our spinal cord, just so we can have a REDUCTION IN OUR PAIN INTENSITY! Maybe you should ask the patient about the remedies they have tried before you write such an "insensitive" article. 

And, shouldn’t opioids be included as integrative care if they reduce pain so patients can participate in complimentary therapies? Oh that’s right, you don’t think a reduction in pain intensity is an important measurement.

While we’re at it, “When was the last time your physician asked about your spiritual awareness, or your circumstances at home?” And, just on the chance that they did (because they are in tune with treating the body as a whole) were they able to provide you with resources? If they could provide access to alternative treatments, are they affordable for everyone?   

On December 2, 2015 my friend Jan Chambers, President of the National Fibromyalgia& Chronic Pain Association and collaborative leader in the PAINS Project, of which I am a participant, had this to say.

NPS misstatement by PROP's President Ballantyne

Drs. Ballantyne and Sullivan incorrectly state that the U.S.established a National Pain Strategy (NPS) to address the enormous burden of chronic pain to 100+ million American adults. In fact, the NPS draft was completed by summer of 2014 but has not re-emerged from the U.S. Dept. of Health and Human Services since then (18+ months) despite requests by many patients, citizens, professional medical groups, and patient advocacy organizations. Chronic pain patients are worse off now because many doctors refuse to treat them; one result of unintended consequences from recent opioid abuse deterrent policies. Lack of a NPS and research funding hurts everyone. With no access to care or new, effective treatments, people with chronic pain are literally cast aside by society and treated inhumanely. The authors would like us to believe that NPS initiatives are in place, reducing suffering and brain-seizing pain, when they ask the ludicrous question, “But is a reduction in pain intensity the right goal for the treatment of chronic pain?” I guess that life-altering and debilitating chronic pain must not be such a burden after all.

If you are a doubter, be grateful, you have not experienced such pain, because one day you may. I have witnessed the change in perception in my own circle of family and friends. If you need a narcotic, it isn’t so bad after all.

“The only pain that is tolerable is somebody else’s.”

~David Sherry, MD, pediatric rheumatologist

Put your thinking hat back on. Don’t be part of the problem, be part of the solution. Embrace this adversity as an opportunity for change before you seriously harm someone, including yourself.

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. 

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Stop Discrimination against My Sisters in Pain, Sign the Petition

Are you a woman in pain? I am. My sisters, we have been identified in the Institute of Medicine Report, “Relieving Pain in America…” as an under-served community that is discriminated against when it comes to treating our chronic pain. It’s time for that to stop!

I have experienced pain most of my life. I had my first cystoscopy at age five. At puberty, I developed migraine headaches and irritable bowel syndrome. I have lived with premature degenerative disc and spinal disease for 30+ years, and have come to know other chronic pain and health issues intimately, fibromyalgia, myofascial pain syndrome, Hashimoto’s, ME/CFS, post herpatic neuralgia, and interstitial cystitis.  After having extensive shoulder surgeries, I returned to work as a nurse (considered to be as physically demanding as that of a construction worker). I paid my own way as a single mom with two small children. I was board certified in emergency nursing and I was an expert witness as a legal nurse consultant. I was a typical type A. But eventually, my ability to keep up - caught up with me.

I will never forget the words on my neurocognitive exam report, which concluded I have significant short-term memory loss compared to others my age and education. I didn't need a report to tell me that. I knew I was slipping. But the hardest thing to bear were the words that said I would be a danger to patients. You see, I was expecting my symptoms would lead to a treatable diagnosis. I would get fixed, and I would get back to a job I loved dearly. After all, I pushed through any obstacle in life. But, it was not to be. All I could do now was put my head in my hands and weep.

“Out of suffering have emerged the strongest souls; 

the most massive characters are seared with scars.”

~Kahlil Gibran

Soon after, I found it was easier to let people think what they must rather than defend something I was struggling to accept myself. I learned the worst, and the most damaging, was not the pain, but the change in the way I was perceived by others. At the most vulnerable time in my life, I had to accept that my family, friends, colleagues, and physicians had forgotten about the person I once was. Through therapy, I learned the very same people that criticized me for seeking pain care, would indeed do the same in my position. I learned that chronic pain could only be appreciated if you experience it. I learned that I needed to be compassionate with my otherwise healthy friends and family, because they have no control over their perceptions anymore than I have control over my pain. But I also learned there is no free ticket to being a bully, which resulted in learning the importance of choosing my friends wisely. 

Women are caretakers, not the other way around. Maybe when we step outside that role, bias emerges. But, as human beings, we all deserve to be treated with the same respect and to have access to the same pain care. I could tell horror stories about the abusive comments and treatment I have suffered at the hands of those who took an oath to do no harm. But from adversity comes opportunity. I took control, and over a decade later, I now have a great team of healthcare providers. But, because of the amount of time it took to find providers with whom I could build mutual trust, I fear what will happen when my husband and I relocate. At my age, I will be dead if it takes that long again. This should not be the case. Regardless of our socioeconomic status, race, gender or where we live in this country, we should all have access to the same pain care and be treated with the dignity and respect we deserve. 

If you are a person living with pain or a caretaker, male or female, stand with your sisters in pain become the catalyst for making a difference. Stand with us as an advocate for changing pain care for women. We are in this fight together and we must serve our compassion by being supportive to one another. 

Cynthia Toussaint has made it easy for us to speak up. Please take a minute, that’s all it takes, and sign this most important petition.

End Pain Care Bias Toward Women 

In Chronic Pain

(click on the title)

Don’t stop here. Share often and cast your net beyond the horizon.

In healing and hope, Celeste

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog.