By Cindy Steinberg

Meaningful advancements in pain care don’t just take place in exam rooms, treatment centers, or research studies. Often, they begin in legislative chambers.

At the state and federal levels, legislation can pave the way for greater understanding, new treatments, and better outcomes. That’s why advocating for policies and laws that will lead to better care for people with pain—such as the Advancing Research for Chronic Pain Act (ARCPA), federal legislation proposed in 2026—is so vital.

Here are eight ways that better policy can help the more than 60 million Americans living with chronic pain.

1. Making Chronic Pain Count

How many people in the United States live with pain? What conditions are they managing? Where do they live? How does pain affect their ability to work, go to school, care for their families, access healthcare, and participate in daily life?

And who is being overlooked?

Without reliable answers to these questions, it is difficult to understand the full scope of chronic pain or determine where resources, research, and care are most needed.

Data from the Centers for Disease Control and Prevention (CDC) tells us that almost 1 in 4 U.S. adults were living with chronic pain as of 2023. That finding is shocking and hard to ignore. But it is only part of the picture.

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.

Data may sound abstract. It is not. We need to understand who is affected, how they are affected, and where the greatest gaps exist before we can adequately address them.

2. Making Care More Affordable

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.

We need current information about what chronic pain costs individuals, families, employers, insurers, Medicare and Medicaid, and the healthcare system as a whole. It is difficult to argue for investment in multidisciplinary pain care and centers without showing that the current inefficient system is costing us so much more for ineffective results.

What is the cost of years spent searching for a diagnosis? Of repeated testing? Of fragmented care? Of treatments that do not work? What happens when an effective treatment exists, but insurance does not cover it or a patient cannot afford it?

Clearer, more complete information about costs and outcomes could help us understand which treatments are costly but less effective, and where those healthcare dollars would be more wisely spent.

3. Strengthening Pain Research & Innovation

Policy also influences the research questions we are able to answer.

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.

Just as important, research policy must require that people living with pain be included in identifying research priorities. Researchers bring scientific expertise. People with pain bring expertise gained through living with these conditions every day. We need both.

4. Helping Identify What Works Best for Whom

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.

For many people, finding an effective treatment plan still involves far too much trial and error. I often use the metaphor that pain treatment is still like throwing darts at a wall.

Policy guidelines and rules can require research that looks beyond whether a treatment reduces pain intensity. 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?

5. Expanding Access to Care

The promise of treatment innovation means little if people living with pain can’t access that care. Geographic barriers may include a limited supply of nearby specialists and difficulty traveling. Logistical challenges may make it difficult to physically attend frequent appointments.

Permanently preserving telehealth access, rather than the current process of revisiting telehealth coverage every few years, can make it more possible for individuals navigating pain to see providers.

Insurance plans and networks may restrict whom individuals are able to see for care. And insurance utilization management restrictions may limit the number of covered appointments, require direct approval from the insurance plan before a treatment is covered, or require people with pain to try and “fail” at a less-expensive treatment before being approved for the treatment they were prescribed.

With better data and a greater understanding of treatment effectiveness and costs, advocates can promote policies that help to curb some of 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.

6. Making Pain Treatment More Inclusive & Equitable

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.

For instance, a one-time report released in April 2023 by the CDC determined that chronic pain disproportionately impacts American Indians and Alaska Natives, bisexual individuals, rural residents, and people living in poverty.

Not everyone experiences or is touched by pain in the same way. Better data, such as that being sought through the passage of ARCPA, can help identify inequities and inform efforts to address them. By revealing imbalances in access, diagnosis, treatment, insurance coverage, and outcomes, better data can increase our understanding of where inequities persist and where change is needed.

7. Centering People With Pain in Decisions & Policies That Affect Them

An important but often underlooked ingredient to advocating for and passing better policy is the inclusion of lived experience. People living with pain, their loved ones, and those supporting them must be directly involved in discussions and decisions about pain policy.

That involvement should begin early, not after priorities have already been set or decisions have largely been made. Lived experience with pain must be incorporated into research priorities, regulatory discussions, clinical guidelines, coverage discussions, and policymaking. People with pain and those supporting them must have a say in both the design of pain research and the determination of what constitutes a successful outcome of a clinical trial or research study.

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. Policy intended to improve pain care will fall short if the voices of people directly affected are not included in its creation.

8. Turning Evidence Into Better Practice

Because pain management is so complex, individualized, and dynamic, having a consistent framework is critical. Providing that framework was the goal of the Pain Management Best Practices Inter-Agency Task Force, 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, released 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.

While the report declared the current gold standard of pain care to be individualized, multidisciplinary, multimodal treatment, 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.

Why Better Policy Matters

Policy can feel far removed from daily life with chronic pain. But decisions about research, coverage, access, data, and healthcare ultimately reach people in very personal ways.

No single policy will solve every challenge facing the pain community. But better pain policy can help us understand where the gaps are, bring lived experience into the decisions that matter, and move evidence into practice in ways that better reflect what people with pain actually need.

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.

That is what it means to come together as #OneVoiceForPain.