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Factors Affecting Access to Effective Chronic Pain Care

In the workshop’s first session, participants considered the lived experiences of people with chronic pain as they seek medical care, discussed the variety of experiences and challenges related to managing chronic pain, and explored how variations in access to chronic pain interventions can affect the care individuals receive and the health care outcomes they experience. The three speakers were Jaime Sanders, author and patient advocate; Edwin Aroke, associate professor and assistant dean for research and scholarship at the University of Alabama at Birmingham School of Nursing; and Staja Booker, assistant professor at the University of Florida College of Nursing.

LIVING WITH MIGRAINE

Jaime Sanders said she has experienced chronic pain from migraine disease for most of her life, with her first migraine attack occurring when she was eight years old. Her mother’s family has a history of migraine, but she was told by most of her physicians that she would outgrow it by the time she turned 18. That did not turn out to be the case; she experienced as many as eight migraines a month throughout her early 20s. In 2001, during the first trimester of a pregnancy, she experienced her first intractable migraine, which did not resolve until her second trimester. Her migraines did not stop, though, and became more severe and frequent. Sanders likened living with chronic migraine to navigating a minefield and never knowing when the next pain explosion will come.

Migraine is a debilitating and pervasive disorder affecting every facet of life, said Sanders. It is frequently misunderstood, trivialized, and dismissed

as merely a bad headache. This dismissal is challenging for those who suffer from migraine, she added, as they are constantly forced to validate their pain. “The struggle of living with an ‘invisible illness’ like migraine begins with the simple fact that others cannot see your pain,” she said. “This lack of visibility can lead to misunderstanding, skepticism, and even outright disbelief. It can make you feel as though your experience is invalid or exaggerated; that the agony you endure is somehow less real because it cannot be easily observed.”

The invisible nature of migraine and other forms of chronic pain extends beyond physical symptoms to the emotional and psychological toll they take, creating a complex web of challenges that others often disregard. “I think there is a disconnect between the physical and emotional aspect of chronic pain, and they are not always treated together,” said Sanders. She noted that migraine is a debilitating neurological condition with a broad range of symptoms, and finding effective treatment is challenging, despite its prevalence.

The lack of effective treatment options for migraine and chronic pain is a major issue for the millions of people living with these conditions, said Sanders. While there have been advances, many people struggle to find treatments that work for them or that they can afford, given the high costs associated with migraine treatments. As part of her advocacy work, Sanders has emphasized the need for more research funding and policy changes that would expand insurance coverage and eliminate copays for diagnostic procedures and migraine treatments, particularly newer, more effective medications. There is also a need, she said, to establish and expand financial assistance programs that provide direct financial support to migraine patients who cannot afford the high cost of treatment.

Sanders said that for her as a Black woman, the “intersection of race, gender, and chronic illness has been a central part” of her experience, influencing how health care providers have perceived and treated her, how she navigates social and professional spaces, and how she understands and manages her own health. She added that disparities in access, treatment quality, and outcomes for people of color, and particularly Black women, can significantly affect the experience of chronic illness. Studies have shown, for example, that Black patients are less likely to receive adequate pain management compared to White patients presenting with the same symptoms (Hoffman et al., 2016; Knoebel et al., 2021). Migraine, she added, is often seen as a “women’s disease,” partly because it affects women at three times the rate of men. As a result, it is sometimes dismissed as being hormonal or psychosomatic rather than recognized as a serious neurological disorder. “This can lead to a lack of understanding and empathy from health care providers as well as from friends, family members, and employers,” she said.

When health care providers fail to take patients’ pain seriously, they are less likely to prescribe effective treatments, less likely to refer patients to specialists, and less likely to provide the comprehensive care needed to manage a chronic condition, Sanders explained.

BIOLOGICAL MECHANISMS OF SOCIALLY DETERMINED PAIN AND THE IMPLICATIONS FOR PAIN MANAGEMENT

Edwin Aroke said a wide set of nonmedical forces and systems, such as economic and social policies and systems, shapes daily life and influences outcomes for people with chronic pain. These social factors, which he called the “social determinants of pain,” include an individual’s economic stability, access to quality education, access to quality health care, neighborhood and built environment, and social and community context. These factors can account for significant variations in health outcomes (Kapos et al., 2024), he said.

Aroke said that epigenetic changes¹ could be the link between the social and biological factors involved in chronic pain (Aroke et al., 2019). He explained that early experiences and environmental exposures can have lifelong and transgenerational effects via epigenetic changes, which regulate how genes are turned on and off at different times, thereby predisposing some people to experience non-specific chronic low back pain. Aroke and colleagues (2022a) found that epigenetic stressors—such as stigma, discrimination, and social injustice—disproportionately affecting Black individuals can lead to epigenetic modifications that heighten the risk of developing non-specific chronic low back pain. It has also been demonstrated that internalized stigma of chronic pain is associated with both worse pain outcomes and epigenetic changes in a signaling pathway that plays a prominent role in stress regulation (Aroke et al., 2022b).

Biological age, which is accelerated by chronic stress, may be another factor involved in determining who is more likely to develop chronic pain. For example, when he and his colleagues estimated an individual’s biological age from their DNA, they found that biological aging was a stronger predictor of chronic pain than chronological age and that the acceleration of biological aging was worse for Black individuals compared to White individuals (Freij et al., 2024). One implication of these findings is that shared exposures to social determinants of pain are root causes of pain disparities, said Aroke. Social and structural forces not only affect treatment outcomes

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¹ Epigenetic changes are defined as “a mechanism by which environmental factors such as childhood stress, racial discrimination, economic hardship, and depression can affect gene expression without altering the underlying genetic sequence” (Aroke et al., 2019).

but also mediate epigenetic and nervous system changes that sustain pain disparities across lifetimes, generations, and cultural histories.

CHRONIC PAIN, DISABILITY, AND AGING ACROSS IDENTITIES

Staja Booker reiterated that chronic pain is not a singular syndrome or disease but a multisystem disease. She also stressed that chronic pain is a disease state, not a symptom, and that disability results from a trajectory of disablement rather than a single cause. It is important, she said, to consider how chronic pain affects cognition and contributes to frailty and mortality, and she added that timely disability determination is important for effectively managing chronic pain.

According to the 2023 National Health Interview Survey, an estimated 21 million Americans have high-impact chronic pain that significantly restricts a person’s daily activities and ability to function. Booker noted the prevalence of high-impact chronic pain increases with age. While experiencing pain at some point in life may be universal, for some people, pain is incurable and disabling, causing physical and psychological limitations and challenges. The invisible nature of pain contributes to disparities, said Booker, and within the last decade, there have been efforts to create more equitable pain care solutions through research. She stressed the need to ensure that “all with chronic pain have timely access and equal and personalized treatment,” she said.

Recent research on differences in pain and disability among Black and White individuals with osteoarthritis has found that Black people experience significantly greater chronic pain and disability and worse scores on a short physical performance battery (Bartley et al., 2019; Vaughn et al., 2019). Booker and her collaborators have also studied pain trajectories and found that younger, less-educated, lower-income, and non-Hispanic Black study participants with knee osteoarthritis had greater representation in the highest pain trajectory group and were missing from the low pain trajectory group, while White adults fell largely into the low and moderate-low pain trajectory categories (Johnson et al., 2021). This suggests that Black adults start at a disadvantage in developing knee osteoarthritis. Family support, she added, can also affect the development of chronic pain in older Black adults (Woods et al., 2024).

Booker explained that pain-affirming care is a nonjudgmental approach that goes beyond accepting and believing patients’ reports of pain. It validates their lived experience of pain and manages pain using timely, personalized strategies based on evidence while ensuring the individual understands the treatments that are available (Booker and Okolie, 2024).