Multiple sclerosis patient experiences with access to disease-modifying therapies: A qualitative analysis on the patient impact of medication access barriers (P3.333)

2017 
Objective: To better understand the Multiple Sclerosis (MS) patient experience when accessing disease modifying therapies (DMTs) in the United States (US). Background: Coverage restrictions (i.e. step therapy) and higher patient cost sharing have become more prevalent in many specialty drug classes including MS. There is a need to understand MS patients’ perspectives on access barriers to DMT medication, associated clinical, financial, and emotional impacts, and actions taken by patients to overcome them. Design/Methods: US-based MS patients recruited from PatientsLikeMe participated in a mixed-methods study comprising a web-based survey and semi-structured interviews with a subset of surveyed patients reporting at least one MS relapse during the most recent DMT access difficulty. Survey responses were qualitatively analyzed for key themes. Interviews informed the development of a theoretical framework representing access patterns. Results: Survey completers (n=507) were 80% female, 90% White, and average age 49. Interviewees (n=10) were predominantly female, White, averaged 9.5 years with MS, experienced DMT access difficulty lasting a median of 18 months, and experienced on average two MS relapses during the access issue. Many patients served as their own agents when navigating DMT access difficulties, relying on their health literacy or personal resources. DMT access difficulties were primarily financial (high patient out-of-pocket costs in prescription plan) and directly affected medication adherence. Pre-existing financial strain from worsening MS (work loss, insurance coverage loss) exacerbated stress during DMT access difficulties for some patients. The extensive time and effort spent obtaining the DMT led to additional stress, worsening MS and triggering relapses in some cases. Conclusions: Patients take a primary role in obtaining their MS medication. DMT access issues affect medication adherence, quality of life, and clinical course of MS. Policymakers, payers, and providers should seek to better understand and minimize the impact of DMT access barriers on MS patients to improve overall care. Study Supported by: Novartis Pharmaceuticals Corporation Disclosure: Dr. Simacek has received personal compensation for activities with PatientsLikeMe as an employee. Dr. Simacek holds stock and/or stock options in PatientsLikeMe. Dr. Ko has received personal compensation for activities with Novartis Pharmaceuticals Corporation as an employee. Dr. Varga has nothing to disclose. Dr. Buechler has received personal compensation for activities with PatientsLIkeMe as an employee. Dr. Moreton has nothing to disclose. Dr. Katic has received personal compensation for activities with PatientsLikeMe
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