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.  

The Painful Truth Documentary Is Here!

As stated in my blog in September of 2015 The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MD, Dr. Webster’s message is irresistible. His dedication to writing the book and producing this documentary (with Craig Worth) is a testament to the spirit and determination he has for people living with pain. He advocates for awareness of the seriousness of untreated or undertreated pain, suicide and addiction. (You can view more information at The Painful Truth Documentary  website.)

Over the weekend, I got an email from Dr. Webster and I am so excited to share it with you.

Dear friends,

I'd like to share some exciting news: "The Painful Truth," the documentary I co-produced with Craig Wirth, was distributed by NETA on March 1 [2017] to all public television stations in the United States. On March 3, it aired on KENW (Portales, NM) and on WXXI (Rochester, NY), and later this month it will air in several other states including Georgia and Montana. I am hopeful that the documentary will air in as most major cities, though this is a decision that is at the discretion of each local station. 

When documentaries like this air on public television, it is common for the host stations to include a discussion with relevant community members. If your local public station decides to air this documentary and you would be willing to make yourself available for a panel discussion, I would encourage you to reach out to your station to offer your participation. It could be a great opportunity to discuss how important it is to Transform the Way Pain is Perceived, Judged and Treated as described in the 2011 IOM report Reliving Pain in America.

Dr. Webster is building a list of the stations and air dates/times for the documentary, which will soon be on the documentary's website, 

www.ThePainfulTruthDocumentary.com 

Please visit the website periodically to check availability in your area and/or contact your local PBS station. 

The release of this film is timely, and it offers the opportunity to have an open dialogue with our healthcare providers and our communities.

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

Chronic Pain: Surviving an Addiction Misdiagnosis with Patti Young

Personal stories humanize the challenges we face as a society, and stories from people living with chronic pain are no exception. I have heard many accounts of what it is like—I have my own. But, do we truly understand, patient and provider, how labels like “opioid use disorder” contribute to our current pain care conundrum?

I want to personally thank Patti Allen-Young on behalf of over 100 million American’s living with chronic pain for sharing her story.

My Life With Chronic Pain After Being Misdiagnosed With Addiction

by Patti Young

I am a patient who lives with chronic pain from a lower back injury that resulted in two surgeries. My condition has led to a label many of us endure—chronic pain.

I understand it can be difficult for a healthcare provider to manage a patient with both chronic pain and a substance use disorder. But does that give them the right to mislabel or use terms they don’t understand, labels that compromise care?

I need to share my story.

Experiencing sudden severe eye pain and knowing the protocol as a nurse, I called ahead to emergency room (ER) to make sure an eye doctor was available. I never saw that doctor. Instead, I was seen by a physicians’ assistant (PA) who prescribed an antibiotic eye drop. My severe pain complaints were not only ignored the PA’s interaction changed after reviewing my medical record. Later I would recognize the uneasy feeling that something detrimental to me was about to unfold. I could have gone blind because of bias in the healthcare environment.

My next encounter with discrimination was when I sought help for severe groin and hip pain, eventually diagnosed as sacroiliac (SI) joint dysfunction from my initial lumbar fusion. I was laying on the ER gurney, my husband at my side. Once again, my extreme pain complaints were dismissed. But this time something bizarre happened. Three security guards descended on me and told me to get in my wheel chair and leave or they would pick me up, put me in it, and escort me out. I was a 59 year old, disabled woman and no threat to anyone. They must have the wrong person, I thought. My husband sat stunned beyond words. Now, I knew there was something in my medical record I needed to see.

How could this happen?

Because my care was being compromised, the investigation into that “red flag” began. What I found was that a new doctor I saw on referral mistakenly documented “history of addiction” in my medical record. I asked myself, “Did I have a dependency problem that no one was sharing with me?” I found no mention of any dependency problems in my records by my other healthcare providers. In fact, at the time I was still being prescribed pain medication. Why wouldn’t a doctor making such a judgment discuss this with me? Did he decide—not knowing me at all—I was misusing my pain medicines? Was it human error?

The Haunting

I understand that people do suffer with addiction, and I would hope those folks get appropriate care. But, a misdiagnosis, a misguided judgment, or a medical record error can affect a patient forever.

Soon after moving to a new state to escape harsh winter weather that aggravated my pain, I had to seek emergency care. You see, despite knowing primary care physicians were accepting new patients and my insurance, I had great difficulty finding one. That red flag, the label, continued to haunt me.

Physical Harm – Is that all there is?

I experienced physical ramifications from labeling, but it also caused me mental and emotional distress and problems relating to others. Even though I realize the label was unfounded, the sleight of hand unleashed more obstacles for me to overcome.

Ignored and mistreated in my times of real need, the hospital staff responsible for their role in having me removed from that emergency room demonstrated their anger by tone of voice, gestures, and curtness. I felt hopeless. It was a very dark time in my life that has become difficult to forget.

Stories like mine shouldn’t happen in a civilized world. As a nurse, I ask, “What is the treatment plan and bias for those who do live addiction or with chronic pain and addiction”? Do they “deserve” to be treated badly, judged, and denied access to the care they need? Isn’t there a problem when people living with chronic pain develop PTSD and anxiety because of their medical treatment? Is it any wonder I distrust the very physicians I have to go to for help? 

I am a person, not a label

Once a trusted fellow healthcare provider, a nurse for nearly 35 years, I no longer feel the camaraderie I once enjoyed. My reputation is important to my character; I am not a different person simply because I live with chronic pain, yet I have been mislabeled and treated harshly.

Educate – Do no harm

The medical community needs to be educated. I certainly have been. That’s why I wanted to share my story. There is a difference between physical dependence and addiction. Addiction, misuse, or opioid use disorder are not synonymous with needing an opioid to treat very real, documented pain conditions. A distinction and differentiation should be made by someone qualified.

Many medical professionals congratulated me for stopping my pain medication when I found other affective treatments. I thought they were crazy. For me, it was no mental feat, because I was not addicted, though the physical withdrawal was no party. I don’t have skin in this game now, but I still live with chronic pain and I can say without hesitation, it’s time to stop hurting and stigmatizing pain patients. It only makes their pain experience worse, their medical care neglectful, and can lead to serious mental health problems or even suicide.

Healthcare providers, make sure your diagnosis has merit. Refer your patients to someone qualified to document “their expert findings”. Have an honest conversation with your patient. Stop for a second and think about how documenting personal opinions can affect someone else’s life, health, and well-being. Join patients like me willing to share their story by becoming part of the solution. Don’t ignore your patient’s pain complaints, advocate for them.

Sincerely, Patti Young

“To create change, we must squarely face the reality of pain in our society, including both the helpful treatments and services that are currently available for people in pain and the ways that we, as a society, are falling short of giving people the help for their pain that they need."

Lynn Webster, MD, The Painful Truth

Editor’s remarks:

The patients I hear from are looking for hope. They feel mistreated, talked down to, and ridiculed; they are bullied into submission and sometimes torture. Perhaps we need better education for providers and patients on the difference between pain and addiction behaviors. Perhaps we can hold others accountable by sharing our stories. Most patients find being a change agent is empowering. So please, help us carry their stories to social platforms. We can make a difference for all those living with chronic pain.

If you feel you are being harmed, please review the ”Guidelines for Pain Warriors” and other helpful information at http://CelesteCooper.com .

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