Authored by Clarion, now part of Lumanity
Understanding how geographic differences affect patient experiences in rare disorders
In the United States, around 15% of the US population, approximately 46 million Americans, live in rural areas. This population has higher rates of mortality and disability, and overall face a series of challenges to their health status, including less access to health care, especially specialists and specialized healthcare facilities, increased likelihood of being uninsured, and on average, lower incomes, and less education than their urban counterparts.
Many of these challenges are exacerbated for patients with rare disorders. However, market research often overlooks these patients, focusing on highly specialized physicians operating in urban academic centers and patient advocates, who are more likely to come from suburban/urban locations with higher socioeconomic status.
Challenges
It is imperative to acknowledge rural patient experiences to fully understand the range of patient journeys. We find that there are two major differences found in rural patient experiences in rare disorders which include significant challenges in diagnosis and provision of solutions.
Diagnosis of rare disorders
Diagnostic journeys for patients with rare disorders often take 5+ years, with multiple physician visits across a range of specialties and often a set of misdiagnoses before actual diagnosis. Rural patients often have less access to specialists and specialized centers. Therefore, at each step of the journey, rural patients and caregivers face hard choices given the cost and time required to see these physicians. Furthermore, given the persistence and self-advocacy required under even the best of circumstances to get a rare disorder diagnosis, it is highly likely that these challenges depress the rates of diagnosis for many disorders.
Provision of treatment of rare disorders
Even once patients are diagnosed, existing systems may make for inadequate provision of solutions. Rare disorder specialists are often located in urban academic centers, making patient visits more difficult and requiring physicians to work through local proxies for long term care. Additionally, the agents used to treat rare disorders are oftentimes limited and expensive. Some patients who have difficulty travelling are faced with the shrinking number of rural hospitals available, and the additional travel distances required for special storage and HCP administration.
The road to inclusive therapeutics in rare disorders
Understanding how geographic differences affect patient experiences is necessary to ensuring the development and access of appropriate therapeutic options. We work to ensure patient geographical diversity in our market research and ask specific questions of key opinion leaders (KOLs) to best understand how patient care can be elevated for non-local patients and uncover new routes to product value.
