7

Patient Journeys and Clinician Perspectives in Treating and Managing Chronic Pain

In the fifth session participants discussed the lived experiences of people with chronic pain as they navigate the Social Security Administration disability system. The session also highlighted special considerations for how medical providers approach treatment of chronic pain of different severities in adults. The speakers were Anna Williams, vice president, Clusterbusters; Joseph Cammilleri, clinical specialist in ambulatory care pain management at University of Florida Health Jacksonville; and Shravani Durbhakula, comprehensive pain service medical director, Vanderbilt University School of Medicine.

THE LIVED EXPERIENCE OF CHRONIC PAIN

Anna Williams grew up on a farm in rural West Virginia. Her family did not have health insurance, and although she experienced abdominal pain, headaches, and persistent chronic pain during her menstrual cycle, the first time she saw a doctor for chronic pain was at age 19, when she was in college. She was diagnosed then with fibromyalgia and migraine, and thanks to insurance, she was able to start treatment. However, at age 23, her symptoms worsened, and even walking became difficult, causing her to lose her job and insurance. The community health clinicians she saw dismissed her symptoms as an “it-is-all-in-your-head kind of thing.” She felt unheard and humiliated.

After spending over two years going through the process of enrolling under the Social Security Disability Insurance program, she was granted eligibility. This enabled her to see a doctor and resume proper treatment.

In the years since, she married, and thanks to her husband’s health insurance, she was able to maintain continuity of care; but following surgery for bilateral torn hip labrums, she began experiencing cluster headaches. During that time, she was once again denied disability coverage—one letter said she was denied because she could be a dishwasher. “To me, that was just heartless, and it made things difficult for me,” said Williams.

At age 42, Williams was diagnosed with bilateral trigeminal neuralgia, which feels like she has a drill boring into her jaw, a sensation that can last for hours to weeks. Because she has struggled to find care locally, telehealth has been a huge help for her, even though she must pay for it herself. “They listen, they believe me, and they think outside the box for treatments,” said Williams.

TREATING CHRONIC PAIN IN UNINSURED PATIENTS: A PHARMACIST’S PERSPECTIVE

Joseph Cammilleri said there are few options for treating an uninsured individual who suffers from chronic pain. “We are limited to medication management for our [uninsured] patients, and while sometimes we can get them into physical therapy, it is just going to be for maybe two or three visits,” said Cammilleri. Motivational interviewing and medication management become the focus for these individuals, he added.

Cammilleri, who received training as a pain pharmacist, said he sees chronic pain patients after they receive a pain diagnosis from their primary care physician. He can spend 30 to 60 minutes with a patient, providing time for the in-depth education many of these individuals need. “And when we are talking about medication therapy management, we are the medication experts,” he said.

One of the biggest challenges for pharmacological pain management is that there are no clear guidelines other than starting with nonpharmacologic and non-opioid therapy, said Cammilleri. “There is nothing that says one medication will work better than another, and the data show minimal effects for pretty much all medication,” he noted. In his opinion, the subjective nature of pain scores and individual response to a given pain medication are part of the problem that leads to trial-and-error approaches. Primary care physicians, he said, have limited time to do a complete pain assessment, even as they must oversee more chronic pain cases given the shortage of pain physicians.

Even for patients with insurance, finding a pain specialist who will take in-network insurance is an obstacle, as is getting them approved for nonpharmacologic options such as cognitive behavioral therapy or pain coaching. Inadequate care transitions can be another barrier when a patient needs to switch physicians, and medication access can be a major impediment. Analgesic shortages, insurance formularies, prior authorizations,

cost, and the stigma associated with opioids can be significant barriers to pain management.

Given these obstacles and the struggle individuals with chronic pain experience to receive appropriate care, it is not surprising that patients become disengaged and lose hope. Establishing trust with a new patient is key, said Cammilleri, and trust starts with believing the patient. Trust also needs to be bidirectional, and when it comes to opioid medication, it is key to trust but verify, he said. He lays out expectations, conducts urine drug screens, counts medication, and frames an individual’s treatment plan options based on safety.

IMPROVING ACCESS TO PAIN CARE: A PUBLIC HEALTH OPPORTUNITY

Shravani Durbhakula said new chronic pain cases are outpacing new cases of diabetes, depression, and hypertension (Nahin et al., 2023), yet only 46.9 percent of chronic pain patients receive regular care, compared to 78.8 percent of diabetics (National Center for Health Statistics, 2023). In 2023 there were 5,871 pain medicine physicians in the United States, which means there were nearly 56,500 potential pain patients for each pain physician, compared to fewer than 15,000 potential cardiology patients per cardiologist and just over 20,000 cancer patients per oncologist (Durbhakula et al., 2024). As a result, there is an average 7.8-year delay to receive pain specialty care, during which time a patient might see eight other clinicians. Some 20 percent of those with chronic pain never reach a pain specialist (Rufener et al., 2024).

Rural areas, said Durbhakula, have a higher pain prevalence but less access to pain specialists. This means that most pain care is delivered by primary care physicians and other health care professionals who lack formal pain training. In Tennessee, where she practices, many pain clinics were shuttered because of questionable opioid dispensing practices, which means that those patients were most likely not receiving appropriate care in the first place and now have even less access to proper care.

One of Durbhakula’s patients, a woman in her 80s, was in a complete 10-year remission from cancer but was still on high-dose opioid therapy because she had shoulder pain. She came to Durbhakula because nobody else would renew her opioid prescription, but neither had anyone tried to wean her from opioids even though she wanted to do so. Durbhakula assisted her through the process and designed other forms of treatment that gave her excellent pain relief.

One issue is that there are system gaps in pain education, starting with a lack of prioritization, said Durbhakula. The average U.S. medical student receives 11 hours of pain education, and only 4 percent of U.S. medical

schools are offering a dedicated pain course (Mezei and Murinson, 2011). There are no shared standards for pain education, and there has been a 45 percent decline in pain fellowship applications since 2019, with only 67.6 percent of pain fellowship programs filled in 2024 (Pritzlaff et al., 2025). In contrast, when she was training over a decade ago, pain medicine was the most competitive specialty in anesthesiology residency. There have been efforts to improve medical education. For instance, at Johns Hopkins School of Medicine, Durbhakula directed a mandatory 20-hour pain course for all first-year students, which shifted the students’ attitudes toward pain patients and reduced the stigma of treating pain (Durbhakula et al., 2024). However, Durbhakula noted, these efforts to increase education of pain management are not standardized, comprehensive, or widespread, nor are there education curricula related to pain management and disability determinations for medical school students to further understand the connections between chronic pain and the disability system.

Durbhakula said the lack of access to pain specialists, lack of pain education for primary care clinicians, stigma associated with treating pain patients, and insufficient insurance coverage for alternative treatment approaches have led to inadequate pain care and increased suffering. These have also led to avoidable disability, creating public health and economic issues. Addressing this public health problem will require a systems-level approach going forward, said Durbhakula. It is imperative to expand primary care physician training on pain management, standardize medical school pain education—including education on disability determinations in U.S. medical schools—incentivize pain employment in rural areas, ensure evidence-based insurance coverage and denials, and increase access to telehealth and virtual care, noted Durbhakula. Finally, there is a need for remote management platforms and digital self-management tools with assistance from artificial intelligence (Piette et al., 2022).