Photo by Deividas Toleikis on Unsplash
This week for #PainAwarenessMonth, the U.S. Pain Foundation released an article explaining some of the key gaps in research for the pain community, and how the Advancing Research for Chronic Pain Act (ARCPA) can help close some of those gaps. In 8 Ways Better Policy Could Improve Life With Chronic Pain1, Cindy Steinberg explains how ARCPA can help improve access to data and research for the more than 60 million Americans (or one in four) that suffer from chronic pain. Read below for a summary of her eight suggestions for better data, including a few examples of my own experiences related to these issues.
- The Breadth of Data
“ARCPA would require the CDC to regularly analyze and publish much more extensive population health data on chronic pain, including the incidence and prevalence of all known pain conditions; demographics such as age, race, gender, socioeconomic status, and geographic location; risk factors, comorbidities, and health consequences tied to pain and specific pain conditions; the effectiveness of the full range of evidence-based approaches; current utilization of medical and social services; and the direct and indirect costs of pain.”
As Steinberg explains, if we do not understand the full scope of pain and its treatments, we cannot adequately address those who are affected.
- Outdated Cost Data:
“One of the most widely cited national estimates found that pain costs the United States between $560 billion and $635 billion annually in medical costs and lost productivity. But that estimate is based on data collected in 2010.”
Those numbers are staggering, but what is even more staggering is that they are from 2010 and that we do not yet have more current and accurate cost data. Better access to cost data will be crucial in determining the best way to spend our money on treatments.
- Money Talks Data:
“Federal funding decisions affect how much public investment goes toward pain research, which conditions are studied, which treatments are tested, and how quickly discoveries can move from the laboratory into clinical care. Better population data can help researchers identify research gaps and determine where additional study is needed.”
- Best Treatments for the Right Population:
“There is no one-size-fits-all treatment for chronic pain… We still lack reliable information about which types of treatment people are using, how effective those treatments are for different conditions and types of pain, what risks they carry, and which combinations of treatments may work best for whom… We also need to understand whether it improves function, sleep, mobility, and quality of life… We need evidence that helps answer a basic but critical question: What works best, for whom, and under what circumstances?”
I’ve struggled with finding the right kind of treatment for most of my life, bouncing between physical therapists, massage therapists, chiropractors, yoga instructors, acupuncturists, etc., spending thousands and thousands of dollars trying to narrow down the treatments that will help me manage my chronic pain the most efficiently. And as a patient with two diseases that cause similar symptoms, it is difficult to determine which disease is causing symptoms at any given moment, and therefore which treatment plan will be most effective. Having better data about the right treatment for the right population would be a high priority for a patient like me.
- Expanding Access to Care:
“With better data and a greater understanding of treatment effectiveness and costs, advocates can promote policies that help to curb some of the most restrictive payer practices. Policies that curb utilization management processes, which often begin at the state level, can open the door to increased treatment access to more people living with pain. And expanding access to multidisciplinary and nonpharmacologic care can give people with pain more options for managing their health.”
I have also struggled with this issue recently as I try to obtain a biologic treatment for my autoimmune disease. After my first rheumatologist proscribed me Humira over six months ago, I continue to be transferred back and forth between two different specialty pharmacies, my insurance company, prescriber, and PBMs, with no traction yet on obtaining my first dose. See my blog post on Specialty Pharmacies for more details about the struggle to access care.
- Inclusivity:
“Disparities in pain care are a continuing reality for a number of population groups, whether based on gender, sexuality, race and ethnicity, or other factors. An important step in closing those gaps is understanding how the chronic pain experience can vary for different populations… better data can increase our understanding of where inequities persist and where change is needed.”
See my Pride blog post on some of the disparities in pain for the LGBTQ+ community.
- Include Patients in the Conversation:
“An important but often underlooked ingredient to advocating for and passing better policy is the inclusion of lived experience… People living with pain understand in ways others cannot how policies, treatments, and healthcare systems affect daily life. Their experiences can identify gaps, unintended consequences, and priorities that might otherwise be missed.”
Some examples of my own lived experience that may be currently missing in research include a) the cost associated with my time spent navigating the specialty pharmacy space to try and obtain an approval for a biologic medication, and b) how the pain scale means something very different to each patient due to varying tolerance levels.
- Better Practice:
“The Pain Management Best Practices Inter-Agency Task Force [was] first mandated by Congress in 2016. A number of agencies and national pain experts convened, with U.S. Pain Foundation serving as the sole patient voice on the panel, to create a best practices report that has helped guide pain management since its release… The report published in 2019… emphasized multidisciplinary approaches to pain care, spanning the full range of treatment approaches: medications, restorative therapies, interventional approaches, behavioral health, and complementary or integrative health treatments… more must be done to make that care available to the millions living with chronic pain. These recommendations must be disseminated more widely to reach clinicians, payers, policymakers, and patients. And, more importantly, we need the data that ARCPA can provide to make these recommendations and treatment selection more specific to individuals with pain.”
In Conclusion:
“ARCPA is one of the most pressing advocacy opportunities currently being considered. Hear from the legislators who introduced the bill here; explore the list of patient and provider groups supporting the legislation here; and download and save a one-pager you can use when advocating or discussing the proposed bill here. And to learn firsthand about ways to help advocate for ARCPA or other important policies impacting people with pain, register for U.S. Pain Foundation’s advocacy alerts.”
For my part, I have registered for U.S. Pain Foundation’s advocacy alerts, and I have sent an email to my legislators encouraging them to vote for ARCPA. Read my blog post about Advocating for Pain Research to find out an easy and quick way to have the Spondyloarthritis Foundation draft an email for you about ARCPA. Until next time, keep reading, gathering data, and pushing policy makers to help us close these painful gaps in research.
Copyright 2026 David Lister. All Rights Reserved.
- Steinberg, Cindy. 8 Ways Better Policy Could Improve Life With Chronic Pain. U.S. Pain Foundation. September 21, 2026. ↩︎
