For many individuals struggling with the day-to-day difficulties of chronic pain, it can be difficult to imagine a world where a diagnosis meant a clear path forward, or where they knew which treatments were worth their time and money.

There is little clarity in the world of chronic pain—and much of that can be blamed on the fact that comprehensive data about chronic pain is critically lacking.

The Advancing Research for Chronic Pain Act, S.2922/H.R.7164, would change that. This proposed legislation would facilitate the creation of a public website, run by the Centers for Disease Control and Prevention (CDC), sharing aggregated and updated comprehensive population health data on chronic pain.

It would provide better data on:

• Frequency and occurrence of pain conditions
• Demographic information such as age, race, gender, socioeconomic status, and geographic location
• Effectiveness of evidence-based approaches
• Utilization of medical and social services
• Both direct and indirect costs
• Risk factors, coexisting conditions, and health outcomes

But for patients who daily face severe pain, an inability to work, and one ineffective treatment after another, better data may seem like a pie-in-the-sky solution, disconnected from their individual struggles.

Here’s how better data will actually affect real people.

Addressing Disparities

The existence of disparities in pain care, as well as higher prevalence of certain pain conditions among minority populations, has been repeatedly observed and documented. But more in-depth data in this area would more specifically highlight individual disparities and help drive solutions for specific populations, shares Cindy Steinberg, U.S. Pain Foundation’s national director of policy and advocacy.

For instance, a CDC analysis of chronic pain from 2019 to 2021 that provided new insights on pain found that non-Hispanic American Indian or Alaska Native adults were almost twice as likely to experience chronic pain as white adults, even those living in the same areas.

“That data alone was a surprise,” Steinberg says. “We know there are disparities, but why is there more chronic pain among indigenous populations? We can have hypotheses, but we don’t know the details. Better data would enable us to do much better research to understand why and to address the problem.”

The Cost of Pain

Better data about the cost of pain could also help support new treatments.

“Insurers and others are often making the argument that this or that new treatment costs so much money—‘Why should we pay this much money for people to get these treatments?’” Steinberg says. “But has anyone looked at all the years each person with pain goes through, taking test after test, trying one ineffective treatment after another? What if we captured all those hidden direct health care costs? In many instances, all the unnecessary tests and failed treatments may actually be costing us a lot more than the new treatment our insurers are denying.”

Steinberg, who has led a peer support group for individuals with chronic pain in Massachusetts for 24 years, notes that almost everyone who has ever participated in the group has seen at least four or five doctors and undergone many tests before they find a treatment that helps them, if they ever do.

Better data on the costs of trying treatment after treatment could pave the way to more directly connecting individuals with effective treatments for their specific pain, rather than requiring them to cycle through other treatments that may not work as well for them due to prior authorization or step therapy insurance hurdles, Steinberg notes.

“If we found that a significant number of people with a certain pain condition did this new treatment and it worked really well, wouldn’t it be great to start with that treatment rather than throwing darts at the wall?” Steinberg says.

The cost of pain research also becomes more palatable in the larger context of the societal cost of untreated pain, she adds.

At least 17.1 million Americans live with high-impact chronic pain, which makes a majority of them—more than 14 million—unable to work.

“When you look at what chronic pain does to people’s ability to have a productive and meaningful life, getting this kind of data is incredibly important for giving people back their lives,” Steinberg says. “It’s demeaning not to be able to work; that has a huge impact on people’s families and their self-esteem. If we just improve pain care even a small amount from where it is now, it could make a major difference in the lives of so many. It’s a win-win all around.” 

Risk Factors and Comorbidities

There are hundreds of examples of risk factors for developing chronic pain, and many of them are unknown or barely understood. Medical professionals and researchers don’t always know why one person heals from a severe injury and continues through life without pain, while the next person experiences an identical injury and spends the rest of their life with intractable chronic pain.

A better understanding of these risk factors could lead to more-targeted treatment immediately after an injury or surgery that could help prevent the development of long-term pain.

Similarly, better data on comorbidities—conditions that occur alongside each other—would give patients a greater understanding of their diagnoses and help drive their treatment and lifestyle choices over the long term.

Making People Care About Pain

Publicizing population-level data on chronic pain will draw more attention to the problem. Although a significant percentage of Americans, almost 21%, live with chronic pain, the issue is not regularly positioned in the public eye in the same way that other conditions or problems are—and that makes investing in pain research a harder sell.

Beginning to analyze and publicize comprehensive data on chronic pain would kick off a cycle of more attention, greater investment in research, and more solutions, Steinberg says.

“If we want more treatments, better treatments, greater access to treatments—we need to prove why people should care about pain,” she explains. 

Seeking Better Data Through the Advancing Research for Chronic Pain Act

This is why Steinberg and a colleague worked so hard to get the Advancing Research for Chronic Pain Act introduced in Congress. Senator Bob Casey (D-PA) took an interest in the bill and together with Marsha Blackburn (R-TN), Tim Kaine (D-VA), and Kevin Cramer (R-ND), introduced the bill in September of 2023. In December, Casey got the bill included in the SUPPORT Act reauthorization, currently waiting for a full vote in the Senate.

A House version of the bill was introduced by Rep. Yadira Caraveo, MD (D-CO-08) and Rep. Zach Nunn (R-IA) in January 2024.

Neither bill has been passed, and advocates are encouraged to continue telling their representatives why it’s so important (the U.S. Pain Foundation has created tools that make it quick and easy to do so).

During a webinar hosted by U.S. Pain about the act, Elizabeth Tapia, MPH, Caraveo’s health policy advisor, shared that the bipartisan bill is vital due to chronic pain’s prevalence across the lifespan of millions of Americans, and the lack of past legislation specifically targeting chronic pain.

Tapia summarized why data matters on an individual level: “There’s increasingly high numbers of people living with pain,” she shares, “but each number is somebody with a unique story and a unique way that pain impacts their daily life.”

That’s why better data on pain, at the level sought through the Advancing Research for Chronic Pain Act, matters for everyday individuals.

“This is population-level data—massive data,” Steinberg explains. “Analysis of massive data is amazing at finding patterns. This kind of data, pulled together in the right way, can give us much better information to inform better treatments in the future.”

—Rebecca McKinsey

To learn more about the U.S. Pain Foundation’s Pain Awareness Month initiative, click here.