Based on the described prevalence and size of the population, approximately 300 to 500 patients with epidermolysis bullosa (EB) reside in Canada. There are specific challenges faced by patients and families as well as the practitioners looking after patients with EB.
Based on the described prevalence and size of the population, approximately 300 to 500 patients with epidermolysis bullosa (EB) reside in Canada. There are specific challenges faced by patients and families as well as the practitioners looking after patients with EB. Canada follows the Universal Canada Health Act, which guarantees universal medical access to care patients and families. As a result, patients do not have to pay to see a practitioner or for in-hospital care; however, they have to pay for prescribed (unless they have private insurance) and over-the-counter medications, dressings, and other medical supplies, which reach a significant amount for patients with high, chronic needs. To date, there is a lack of government (federal or provincial) funding that prevents the development and sustenance of specialized EB centers. It is also difficult to centralize EB care at a national level (as in the United Kingdom, Chile, and other countries) because the EB population is spread over a large territory. In addition, because of the funding formula of the pediatric hospitals, care over age 18 years is discouraged. As children with EB live longer, their care ideally should be transferred to an adult EB specialized center. Currently, there is no formal adult specialized EB care in Canada; most adults continuing to be followed in the pediatric centers beyond their 18th birthday. This scenario has limitations in that specific adult issues, such as sexuality, employment, independence, and skin cancer, are not part of the traditional pediatric expertise.
The EB care is currently provided primarily in the major pediatric centers, such as those in Toronto, Vancouver, and Montreal. Recognizing the challenges associated with caring for patients with EB, SickKids hospital in Toronto established the first multidisciplinary specialized EB clinic in Canada in January 2004. This specialized EB clinic takes a coordinated, collaborative approach involving many subspecialties, all focused on improving the quality of care delivered and health outcomes for patients with EB and their families. Housed within the dermatology program, the EB clinic is supported by a team of physicians and nurses from dermatology, wound care, plastic surgery, gastroenterology, hematology, ophthalmology, cardiology, dentistry, pediatrics, and chronic pain as well as social work, occupational therapy, and physiotherapy. The team manages the outpatient care of 50 to 60 pediatric patients (0–25 years of age) with EB and provides inpatient consultations for admitted patients, prenatal counseling for affected families, and advice and consultations to other providers across Canada. The EB clinic offers improved access and delivery of care, coordinating appointments on the same day, leading to increased patient and family satisfaction and improved clinical outcomes. A list of EB specialists is in Table 1 .