The Opioid Crisis is Not Over, Neither is the Pandemic: How Pain Patients are Caught in the Middle

A conversation with the U.S. Pain Foundation’s Cindy Steinberg on the status of legislation, research and care – and how sharing your pain story can help.

Editor’s Note: In April 2020, the pain support group that Cindy Steinberg founded commemorated its 20th anniversary just as PPM is celebrating its 20th year of publication this September. We are highlighting voices from the chronic pain community to mark the occasion – but it does not feel entirely celebratory as we are living in a very unusual, and often alarming, moment in time.

For those living with chronic pain conditions, they are facing both the struggles of an un-ended opioid crisis where access to adequate treatment is often impeded, and the fears of being trapped by a seemingly incurable virus that is particularly attracted to those with weakened immune systems. Here, we talk to Cindy about how she is continuing her hard advocacy work to raise awareness about these individuals’ unique struggles, and we share genuine stories of hardship – and hope – from a few people fighting the good fight to relieve their relentless pain.

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Since Cindy’s small group of pain patients first started meeting in a library in Arlington, MA, in the year 2000, more than 450 people have participated in finding comfort, connections, inspiration and learning from others living with chronic pain.  At any one time, there are roughly 65 active members with 20 showing up for the monthly meetings, which have most recently gone virtual. “Once this pandemic passes, we’ll celebrate in person,” says Cindy, who also serves as the National Director of Policy and Advocacy for the U.S. Pain Foundation and Chair of the Policy Council of the Massachusetts Pain Initiative.

Cindy is a chronic pain patient herself, and a tireless advocate for others living with chronic pain conditions. We spoke to her before and after the pandemic hit the United States about her personal journey, the impact of the opioid crisis on individuals like herself, legislation that’s in the works to help their cause, and the importance of advocacy and engagement – even in times like these.

 

Cindy Steinberg

PPM: Tell us about your pain story.

Cindy: My injury happened more than 20 years ago when my company was moving offices and a large, heavy filing cabinet fell on me, catching me mid-back and pinning me down causing severe soft tissue and nerve damage. I’ve been living with pain ever since. When this happened to me, I couldn’t believe that medical science didn’t have a solution. I went from doctor to doctor and to pain clinics.

I had steroid injections and nerve blocks, tried all types of alternative therapies. It took 5 years until I found a doctor who truly listened and then told me straight out: You have chronic pain; there is no cure.  He told me he could help but that I had to give up my career and try medication. He really worked with me and helped me learn how to deal with my pain.

PPM: Unfortunately, it seems not much has changed in the past two decades. People with chronic pain still go from doctor to doctor and still struggle to find relief.  When the CDC issued its prescribing guideline in 2016, the guideline caused confusion and constraints for those who were using opioids safely to relieve their pain.

Cindy: Yes, as we predicted, that guideline resulted in a lot of negative consequences. States have enacted regulations and laws that have disrupted the care of many people living with chronic pain. [As a result] a lot of people were [and are] tapered down or off opioids, even if they were using them legitimately and safely, and sadly, some were just cut off.

And now, since it’s become so controversial to prescribe opioids, [many] doctors refuse to prescribe them and many no longer even want to treat people with pain. Adding to the problem is that there are so few pain specialists [about one for every 61,000 individuals] that the bulk of people with pain have to see primary care providers (PCPs) who often don’t have training in how to treat pain. (More on the lack of pain specialists in the US.)

PPM: Has the opioid crisis created any positive change for pain patients?

Cindy: Yes, but primarily at the federal level. Probably the biggest change has been at the National Institutes of Health (NIH) with the recognition that there’s long been an underinvestment in basic research into our understanding of pain in the human body relative to its societal burden. This has been glaringly obvious during the opioid crisis when everyone is looking for other options, particularly for severe pain, and found that there’s very little else [beyond opioids] that’s effective.

So Congress and the leadership at NIH have finally made a serious commitment to changing that with the HEAL (Helping to End Addiction Long-term) Initiative – an initial $250 million investment into pain research. Also, NIH is conducting a Common Fund Project [https://commonfund.nih.gov/pain], which is a long-term interagency project focusing on increasing our understanding of how acute pain turns chronic. This is a significant investment in fundamental research.

PPM: We’ve heard about your “bedside” Senate testimony – can you share a quick recap?

Cindy: In February 2019, I was invited to speak before the Senate Committee on Health, Education, Labor and Pensions (HELP) during a hearing entitled “Managing Pain During the Opioid Crisis.”  Because I can’t stand or sit for more than an hour at a time, I told them I needed a place to lie down during the two-and-a-half-hour hearing so they brought in a hospital cot. That appearance made for a funny headline on NBC news, “Woman on a Cot Testifies Before Congress.” 

That was the first Congressional hearing on chronic pain in more than a decade and it really shed light on the inadequacy of current pain treatment.  (More on Cindy’s Congressional testimony)

PPM: The Comprehensive Addiction and Recovery Act (CARA), a public law enacted in 2016, required the US Pain Management Best Practices Inter-Agency Task Force to develop a report, which was published last year to address updates, gaps, and inconsistencies in pain care. You served on the Task Force. Can you share a bit about the report’s final recommendations?

Cindy: I think it was a good and well-balanced report and it garnered a lot of attention and praise. Its key recommendations are that individualization in all aspects of pain care is essential, multidisciplinary, integrated care combining pharmacological and non-pharmacological treatments is best practice, education about pain management and pain as a disease of the nervous system and brain is necessary for the public, healthcare providers, patients and policymakers and that we must reduce stigma and other barriers to care to achieve the improvements in pain care that we so desperately need.

Editor’s Note: Specifically, the 116- page report included a 3-page review of the 2016 CDC Guideline on Prescribing Opioids for Chronic Pain, stating: “The Taskforce recognizes the utility” of the guideline … “Unfortunately, misinterpretation, in addition to gaps in the guideline has led to unintended adverse consequences. Our report documented widespread misinterpretation of the CDC Guideline – specifically the recommendation regarding the 90 morphine milligram equivalents (MME) dose.” The report went on to say that “Although the CDC Guideline was not intended to be model legislation at least 28 states have gone beyond the guidelines and enacted legislation related to opioid prescribing limits. As a result such unintended consequences may have led health care providers to limit or not provide pain treatment due in part to concerns….of investigations and prosecutions by drug enforcement.” 

 

PPM: What’s happened in the past few years at the state level?

Cindy: I’ve been working in state government in Massachusetts for more than 10 years and we have made incremental positive changes.  One example is the CARE Act, a state bill that passed in 2018. We were able to remove some potentially damaging provisions that our Governor proposed such as a commission to recommend disciplinary measures for doctors who “overprescribe” and prescription opioid MME limits. 

Instead, we got several positive pain provisions added to the bill, including a requirement that public and private insurers cover “a broad spectrum of pain management services” and a program paid for by the state in which PCPs can consult with a team of pain-management specialists about how to treat chronic pain patients. The goal of the program is to encourage PCPs to retain and care for pain patients.  We had heard from so many pain patients searching for doctors because their doctors would no longer treat them. The consultation program has been up and running for a year and a half and one outcome of the insurance provision is that Blue Cross Blue Shield of MA is now covering acupuncture for chronic pain without prior authorization.  

There have been many bills relevant to pain management introduced in state legislative sessions this year.  Unfortunately, many have been stalled due to suspension or slowing of regular legislative business because of the pandemic.  One example is a New Hampshire bill that calls for providers to “administer care sufficient to treat a patient’s chronic pain based on ongoing, objective evaluations of the patient without fear of reprimand or discipline.”

It also states that prescribing of medication, including opioid analgesics, shall not be pre-determined by specific Morphine Milligram Equivalent (MME) guidelines. Language from this bill was inserted into a larger health bill that passed the New Hampshire House and Senate and is awaiting signature by the Governor. By the time this article is published I hope that bill has become law

So there’s been some positive movement. (The U.S. Pain Foundation reports on positive regulatory trends regularly.)

 

PPM: How has COVID-19 affected pending legislation?

Cindy: For the most part, a lot of the progress that we were making on Capitol Hill advancing the recommendations in the Pain Management Task Force Report  and other pain policy efforts have been delayed or put on pause. We have been successful getting report language in the House Labor HHS Appropriations Report that accompanies the spending bill so we are pleased about that.

At the state level, a lot of state legislatures suspended regular business for several months and some who are still in session are just starting to move critical bills related to their budgets, elections or COVID-19. While some regular business bills may pass, it is likely that progress with state pain-related legislation will have to wait until after elections or more likely, 2021 legislative sessions.

More on how pain patients are struggling during the COVID Pandemic and how opioid overdoses are increasing in parallel with the pandemic.

PPM: What do you think will move the needle in a significant way for pain patients?

Cindy: I’m banking on Congress’s investment in the NIH’s HEAL initiative to significantly improve our understanding of the biological mechanisms underlying chronic pain in the human body. Pain is tremendously complex. There are so many different conditions that result in pain – not only from serious injuries, as in my case, but from diseases such as diabetes, arthritis, and cancer, and numerous less well-known conditions…. Regardless of the original cause, we now know that chronic pain becomes its own disease of the nervous system and the brain.  Deepening our understanding of its biological underpinnings will promote greater investment into finding more effective treatments.

Another goal of HEAL is to find biomarkers [a biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease] for pain.  One challenge for people living with pain and researchers who study pain, is that pain is invisible.  There are no objective measures of its presence. People often are not believed and there is a large placebo effect in studies. Biomarkers would help with both of these problems.

PPM: There are an estimated 50 million pain patients in the US. About 20 million suffer from intractable pain, often leaving them unable to work. How can they advocate to help things change for the better?

Cindy: We are training more people to be advocates and helping them to see that they can be effective right from their homes. Everyone with pain has a personal story to tell.  We teach our volunteers how to tell their story in a concise and impactful way. Everyone can e-mail or call their state and federal representatives offices and educate their aides about pain and why improvements in pain care are needed.

Hearing directly from people affected by pain can make a significant impact and a big difference in what they do. The truth is that things in Washington and State Houses only change when many people speak up. Imagine if all 20 million Americans with high-impact chronic pain contacted their Congressional representatives and senators.  That represents 20 million votes and would undoubtedly have a huge impact on pain policy!

PPM: What do you often advise others living with intractable pain?

Cindy: I would like people with pain to know that it is possible to live a quality life despite chronic pain. I encourage everyone who is struggling with pain to try different therapies both pharmacological and non-pharmacological in combination with each other. Track your pain to find out what makes it better and worse.  Understand and try to live within your personal pain limits.  Build in rest times and go easy on yourself.  Find a counselor or therapist to speak to about how to handle all the challenges everyone confronts who lives with chronic pain. 

And, find a support group where you can meet others living with pain, develop friendships and learn from each other.

PPM: How do you manage your own pain?

Cindy: I have strict limitations on the amount of time I can be upright. I lie down every hour for 25 minutes every day and alternate like that throughout the day. I do a water-based physical therapy program in deep water with a wet vest and foam barbells, I walk every day, and I take medication. With all those things combined, I’m usually able to manage my daily pain. 

It is hard to live within those limits so at times, I exceed them and pay for it with a searing band of pain across my mid-back and/or painful muscle spasms. Even after all these years, pain is still a daily companion.  It is something you have to learn to accept.

PPM: Are you feeling hopeful?

Cindy: Yes. But I do realize that effecting change in pain care in this country is a long game. It requires enormous persistence and patience. Every once in a while we score some big wins but mostly you need to be content with slow progress and moving the ball a little at a time. Nevertheless, it is a mission that I am committed to.

 

See also, the perspective from pain patient advocate Richard A, Lawhern, PhD, regarding progress in pain research and care.

 

Updated on: 08/14/20
Continue Reading:
Voices from the Opioid Crisis: 4 Years After the CDC Guideline Changed the Rules
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