Abstract

ABSTRACTTimely and continued access to high-cost medicines for the management of chronic illnesses such as multiple sclerosis, are often constricted by its affordability for patients. Health systems also face challenges in arranging sustainable financing for populations with chronic illness in need of equitable and long-term access to high-cost medicines. In many low-to-middle income countries, pluralistic health payers within and beyond the public system contribute to health financing. The structures, processes and dynamics of access through these payers however, may have limitations and negative consequences for patients. In this paper, we present vignettes of case experiences from working individuals with multiple sclerosis in Malaysia, on their experiences and encounters when seeking access through public and private health payers. The Malaysian case and experience is an example of the public–private health care system challenges in providing sufficient access and financing to high-cost medicines. Themes include limited and interrupted hospital access, requirements to prove individual socio-economic deservingness for reimbursement, and confronting discrimination from employers as discretionary payers of medical care. These discussions reinforce the value of universal health access, pooled systems of financing and risk sharing to provide comprehensive health care access and reduce economic and health vulnerabilities in patients.

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