Rare Disease Curative Care Expenditure- Financing Scheme-Health Provider- Beneficiary Group Analysis — An Empirical Study in Sichuan Province, China

Abstract

Background: Rare diseases impose heavy economic burdens on patients’ families and society worldwide. This study has used the samples from Sichuan Province of China to estimate the curative care expenditure(CCE) of ten rare diseases to provide reference and support for the prioritization of rare disease health policies. Methods: The multi-stage cluster sampling method was adopted to conduct a survey of 9714 rare disease patients from 1,556 medical institutions in Sichuan Province in 2018. Based on System of Health Accounts 2011, the study estimated the total curative care expenditure on rare diseases and identified financing sources and their allocation among different health institutions and the patient population. Results: In 2018, the total CCE of the ten rare diseases in Sichuan Province was 19.001 million US dollars; the top three rare diseases in terms of CCE were Hemophilia ($4.3786 million), Young-onset Parkinson Disease ($2.9627 million) , and Systemic Sclerosis ($2.4457 million); household out-of-pocket expenditure (86.00% for outpatients, 41.60% for inpatients) and social health insurance (7.85% for outpatients; 39.58% for inpatients) were the main sources of financing. The out-of-pocket expenditures for patients with Young-onset Parkinson Disease, Congenital Scoliosis, Autoimmune accounted for more than 60% of the total CCE. More than 80% of the rare disease CCE was incurred in general hospitals. The 40-59 age group consumed the highest percentage of CCE (38.70%) while men spent slightly more (55.37%) than women (44.64%). Conclusions: Since rare disease treatment is costly and household out-of-pocket expenditure is high, we suggest taking steps to include rare disease drugs in the National Reimbursement Drug List, scientifically design insurance coverage range. It is also necessary to explore a multi-tiered Healthcare Security System to pay for the CCE of rare diseases and to reduce the economic burdens of patients.

Commercial Health Insurance, Catastrophic Medical Expenditures and Resident Income Inequality

“…At present, there are about 20 million patients with rare diseases in China. Nevertheless, the annual cost of some drugs not included on China's national drug reimbursement list can reach as high as one million yuan per patient, far exceeding the standard of catastrophic medical expenditure (Li et al, 2022).…”

“…It can temporarily transfer purchasing power from healthy people to sick people, which is bene cial to disperse the disease risks of all people and facilitate social fairness. Additionally, medical insurance has the characteristics of short payment periods, strong pertinence, and quick effects, and can narrow urban-rural income inequality with improvements in labour marketization (Hua Li et al, 2022).…”