The Facial Pain Association (FPA) is the largest patient organization supporting all people affected by neuropathic facial pain, leading the world in resources for information and healthcare guidance. Through programs of education, personal support, and advocacy efforts, the FPA supports patients, their loved ones and caregivers, and healthcare professionals who diagnose and treat people affected by facial pain.
Although trigeminal neuralgia (TN) is not the most common form of neuropathic pain, with an incidence of between 0.03 and 0.3%, it is the most debilitating. While some TN patients may be well managed with carbamazepine and other medications, the therapeutic effects are often transient, and in many individuals, the side effects are almost as debilitating as the pain. Furthermore, surgery only helps a minority of sufferers. Opioids may provide some relief to certain patients, but as many as 55% of TN patients may be prescribed concurrent opioid therapy, despite its lack of evidence for efficacy — patients and their doctors deserve more options.
As with other pain disorders, one of the major barriers to the discovery of more effective treatments for TN is a lack of funding. In 2023, the National Institutes of Health only allocated approximately three million dollars for research involving neuropathic facial pain, two-thirds consisting of research for postherpetic neuralgia. In the last year alone, the FPA has endorsed five proposals to the NIH through various mechanisms. If opioid use disorder is to be adequately addressed, more therapies for TN and other facial pain disorders are desperately needed.
Recommendations to address these challenges:
- Invest in research focused on trigeminal neuralgia and other cranial neuropathies which have a high burden of disease and limited treatment options.
- Prioritize advancing health equity by funding studies that engage individuals with lived experience from marginalized and underserved communities, including rural communities, ethnic and racial minorities, and those with low socioeconomic status.
- Reduce stigma by investing in public awareness campaigns and fund applications from researchers who partner with patient organizations like the Facial Pain Association.
- Accelerate drug development by establishing a model of collaboration for patient organizations, researchers, federal agencies, and biotechnology and pharmaceutical companies to partner for progress.
- Prioritize data collection and sharing specific to neuropathic facial pain to assist patient organizations like the FPA with advocating for common sense policies that keep patients at the center while addressing challenges faced by clinicians in providing care to patients with chronic pain.
Thank you for requesting input on the Helping to End Addiction Long-term (HEAL) Initiative. For additional information, please contact Brandi Underwood, FPA’s Manager of Development, Research, and Advocacy at [email protected] or call 800-923-3608.
