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Pain Advocacy
A Peek Into Pain Advocacy

Released: October 30, 2023

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Key Takeaways
  • Chronic pain is one of the most prevalent, costly, and disabling health conditions in the United States.
  • A whole-person, multi-modal, patient-centered model of care that addresses all of the pain and non-pain conditions a person has is the current gold standard for chronic pain care.
  • Chronic pain remains highly stigmatized; there is a great need for patients, clinicians, and scientists to speak out together about this condition, its impact, and what changes and advancements are needed in research and healthcare to improve the quality of life for millions of Americans with chronic pain.

Christin Veasley is cofounder and director of the Chronic Pain Research Alliance. In this commentary, she explains how she got involved with pain research and advocacy, including a description of what her group is working to accomplish to improve the pain management landscape.

Pain Experiences
I would start off by saying that my entry to chronic pain was not necessarily typical. When I was 15 years old, I was hit by a car while riding my bike. That left me with all of my ribs broken, a collapsed lung, a shattered leg, and multiple organ damage, including what doctors later in my life proposed was likely a mild brain injury. I was in the hospital for a month and had multiple surgeries; the next year I went through physical rehabilitation. Throughout this experience, I experienced many different types of pain—acute, traumatic, surgical, and postsurgical. Then, about 2 years later, I developed chronic pain.

It started in my upper back, neck, and head region. As a college student on the premed/pre-physical therapy track, as well as a former athlete, I had a base knowledge of rehabilitative nonpharmacologic measures for pain and was able to manage this pain on my own for a time with chiropractic care, massage, exercise, ice, and heat. About a year later, I developed pelvic pain which I could not adequately manage on my own and began seeing a healthcare professional (HCP).

Comparing these 2 very different events in terms of pain care is a bit difficult. Following the car accident, the emphasis was on saving my life. Although I was asked questions about my pain levels and my acute pain was treated, it wasn’t the main focus of my care. When I did develop chronic pain, I was lucky in the sense that it had a traceable source in my medical records—making it easy to gain support of HCPs rather than being dismissed for an invisible condition.

In terms of opioid use, of course I received them for my trauma and surgical pain, but opioids weren’t a management strategy offered for my chronic pelvic pain. Over the years as my chronic pain has become more widespread, I have, however, trialled dozens of other nonopioid strategies: different classes of central nervous system–modulating medications, physical therapy, medical devices, chiropractic care, massage, ice, heat, exercise, yoga, stretching, and others.

Advocacy Experience
My nonprofit work came into play shortly after I began experiencing chronic pain. My pain experience was so life-altering that I wanted to raise awareness and help others experiencing the same thing. I originally thought that I could help by becoming a HCP or researcher, but with my unique combination of lived experience, premed background and time spent as a basic and clinical neuroscience research assistant, I decided that I could make the most widespread impact by engaging in the research advocacy space.

I volunteered for a nonprofit that was working on women’s pelvic pain conditions and started running a support group, writing newsletter articles, and otherwise communicating the scientific information at more of a lay level to bring education and awareness to the public. As I got more involved in the nonprofit world, I started serving on boards and taking part in congressional education initiatives and other advocacy-related work. I’ve now been involved in chronic pain research advocacy for about 30 years.

My personal experience with chronic pain, as well as conducting basic and clinical research has been a major asset in this line of advocacy. As a person with chronic pain and a research foundation, I have been able to bridge the patient and science communities and push the issues forward better than a singular experience might.

I have found that one of the most impactful methods to gain traction when educating government officials and the general public is to include data—how many people are affected by chronic pain? (More than 50 million American adults). How significant is their pain? (Nearly 20 million have their work, school, or daily activities impacted by chronic pain). How much money is pain costing us as a country? (More than $600 billion per year). How disabling it is? (Back pain and other pain conditions are in the top 10 list of most disabling conditions). Despite this data, however, we still face challenges in implementing change: there is immense stigma and bias around chronic pain and people have a hard time wrapping their heads around it. Further, on the list of federal research funding priorities, chronic pain falls behind health issues that are deadly or transmissible. This is where having a multi-stakeholder team is especially effective: it helps to have patients share their personal stories (especially those who hold positions of influence), HCPs discuss their challenges in providing evidence-informed care to patients, and scientists share scientific gaps that need to be addressed by research to advance patient care and improve people’s quality of life.

The initiative that I cofounded, the Chronic Pain Research Alliance (CPRA), advocates for a specific set of conditions called chronic overlapping pain conditions (COPCs). These are pain conditions that commonly co-exist and solely/predominantly impact women, and include endometriosis, irritable bowel syndrome, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic migraine and tension-type headache, temporomandibular disorders, fibromyalgia, interstitial cystitis, chronic low back pain, and vulvodynia.

We primarily focus on: 1) increasing the overall federal investment in chronic pain research, because if you don't have that first, you can't really focus on subspecialties, and 2) promoting a collective and collaborative research approach to COPCs, with the goal of understanding underlying mechanisms that may be common across these conditions (or subgroups of these conditions), as well as what factors make certain people, particularly women, more likely to develop COPCs or multisite body pain. We also advocate for improved knowledge translation efforts, team-based models of care, development of novel therapeutics for COPCs, and the inclusion of patients as partners in research.

In regard to team-based models of care, it’s very common for people with chronic pain and COPCs to be under the simultaneous care of multiple specialists who do not communicate or coordinate with one another. For example, maybe a woman with vulvodynia visits a gynecologist; if she also has migraine, she might see a neurologist; for low back pain, maybe an orthopedist. But in the current model of siloed specialty care, very few specialists ask women about whether they have pain in other areas of their body—steering us away from a comprehensive, multimodal treatment approach. In addition, it’s very common for patients with COPCs to also have non-pain coexisting conditions that are not assessed in routine care, such as sleep disorders, mood conditions, and cognitive impairment. If you treat one of these conditions and don’t address the others, the overall effectiveness of any treatment regimen is going to be limited. As is done for other chronic illnesses, it is imperative that we take a whole-person approach to pain management. In my case, it took me 6 years with 6 different HCPs to identify a multi-modal approach that addressed all of my conditions. This trial-and-error process summed to about 20 hours a week at appointments, doing home exercises, managing side effects, finding new providers, and dealing with insurance claims and bills—bills that easily amounted to tens of thousands of dollars. A team-based, whole-person, patient-centered model would likely have lessened the time, money and anguish I spent in search of pain relief.

There are only a handful of centers in the US that currently utilize a team-based model, so, unfortunately, this type of care is not accessible to the majority of the chronic pain population. Twenty years ago, there were more centers providing this type of care, however, insurance companies stopped reimbursing for them and the current number of remaining centers is dwindling. Even outside of pain management, our healthcare system was built to treat acute medical problems—and it hasn’t changed much despite the fact that America has become a nation of chronic illness, with 60% of adult Americans having at least 1 chronic health condition.

There is definitely a push for implementation of this type of model: some chronic conditions like cancer and diabetes have more accessible team-based treatment centers. But for most other chronic conditions like chronic pain, they're just not available. So we also prioritize advocating for research that will generate data on team-based models—both their long-term efficacy, as well as their cost savings. Better data will inform better models of care.

Your Thoughts?
Advocacy work is such an important component of advancing the field of pain management. As HCPs, there is the opportunity to join advocacy efforts and educate large populations to enact change. Are you involved in any pain advocacy work? Answer the polling question and tell us about your experience in advocacy in the comments. For more information on pain management, register for one of the free CCO workshops being held throughout the year.

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