Abstract
Background:Patients with Raynaud’s Phenomenon (RP) from systemic sclerosis (SSc) may experience severe complications. Digital ulcers (DUs), occur in approximately half the patients with SSc, and cause hand dysfunction, severe pain, and decreased quality of life. DUs lead to increased healthcare utilization and systemic economic burden through hospitalizations, ED visits, and ambulatory services (1). However, access to medications such as PDE5 inhibitors and prostacyclins that are within the EULAR/EUSTAR SSc guidelines (2) in a country with global health care but patchy pharmacare such as Canada has not been studied.Objectives:The purpose of this study was to elucidate the access to treatment of medications for RP and DU in patients with SSc in Canadian provinces through identifying the provincial and private insurance coverage of PDE5 inhibitors (PDE5i) and prostanoids, the timelines and procedures of requesting these medications, and the process of administering IV prostanoids if required for patient care.Methods:We designed an online survey and collected data through the Survey Monkey platform. The survey was administered to rheumatologists affiliated with the Canadian Scleroderma Research Group (CSRG) from December 2020 to January 2021. Responders were asked to report if the province or private insurance automatically provided PDE5i for patients with RP and DU or if a dedicated process was required to attain these medications. Additionally, responders were asked to describe the process of administering Iloprost, Epoprostenol and Alprostadil and the barriers inherent to their administration. Of note, there is no DIN number for Iloprost in Canada so every time it is used there must be an application to Health Canada.Results:The survey was completed by 100% of CSRG researchers (17/17), representing 8 provinces in Canada. None of the provincial governments provided coverage for PDE5i without special requests that were adjudicated on a case by case basis with approximately half the provinces paying for PDE5i upon special request if a patient was eligible for provincial drug insurance (ex elderly, youths, low income families). Two provinces, Quebec and Saskatchewan, provided PDE5i “all the time”. Whereas NS, MB, ON, BC, and AB provided them “sometimes”; NFLD provided them “never”. Provincial governments and private insurance fulfilled requests “within 1 month” 62% of the time and the other requests took longer to be answered. Private insurance approved coverage with special request in AB, MB, QC, ON, and NS. Respondents described administration of IV prostanoids as “inconsistent”, requiring “a lot of work”, and that patients in most jurisdictions be admitted as in-patients for provinces to cover these medications.Conclusion:Most jurisdiction within Canada do not provide coverage for PDE5i and the process to obtain access for patients is delayed, non-uniform, and often not approved. Intravenous prostanoid infusions are difficult to obtain and have system barriers. Advocacy and cost effectiveness data should be used to advocate for access to medications that are recommended within SSc recommendations.
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