One of the most essential elements of managing a chronic rare disease is keeping follow-up appointments with health care providers. But that is easier said than done. Data from the federal government suggest that as many as 3 million patient are not keeping doctor’s appointments. It is easy to judge them as non-compliant and lose sympathy, but there are often underlying contributing causes that need to be recognized.
Specialists in rare disease are more rare than rare patients. Consequently, rare patients and their caregivers often need to travel long distances – sometimes several states away – to see a qualified provider. That requires a considerable time commitment and a significant monetary investment. There is gasoline and/or travel tickets to be paid for, meals and possibly lodging. Trips for medical visits may also result in lost wages for patients and their caregivers, providing another layer of challenge.
Even patients who have a provider near them face transportation hurdles. Those who live in suburban areas may not have access to public transportation, which means either you have to have a car or have someone who has a car take you to your appointment. Even in urban settings where there may be trains and buses, they may be unreliable or not go where the patient needs to go. And taxis and ride services are expensive.
Rare disease HCPs need to look deeper to identify the root causes of missed appointments. It is encouraging that ride share services like Lyft and Uber have debuted medical transportation divisions that can partner with providers to offer rides for patients who face transportation challenges. HCPs can enter into these relationships and make sure that they publicize this service to their patients as an additional service to provide positive outcomes to patients.