25. HEALTH INSURANCE CO-PAYMENT POLICIES FOR RARE DISEASES: INTERNATIONAL LESSONS LEARNED
Main Article Content
Abstract
Objective: The high cost of treatment, prolonged diagnostic delays, and limited access to medications had made rare diseases a significant challenge for health insurance systems. In the context of Vietnam’s proposed amendment to the Law on Health Insurance—which included full coverage and the removal of referral requirements for patients with rare diseases—this study was conducted to synthesize international experiences regarding co-payment levels and healthcare access mechanisms for this patient group.
Methods: A literature review was carried out using academic databases and international policy reports, focusing on health insurance reimbursement and referral management in the context of rare disease treatment.
Results: Policy analysis from eight countries and the European Union revealed three major models: (1) full exemption from co-payment for patients with rare diseases (e.g., the UK, Italy, Australia, Taiwan); (2) conditional exemptions such as income-based cost caps, HTA waivers for orphan drugs, or classification of rare diseases under long-term conditions with enhanced coverage (e.g., Japan, Germany, France); and (3) the enactment of rare disease-specific laws or national strategies, providing legal and financial foundations for long-term support. Several countries also implemented dedicated support funds—such as LSDP (Australia), IMF (UK), and AIFA 5% (Italy)—to ensure access to treatment.
Conclusion: International experiences suggested that adapting co-payment and referral policies in a flexible, patient-centered manner aligned well with the specific nature of rare diseases. The proposed reforms in Vietnam’s amended Health Insurance Law—such as eliminating referrals and offering full reimbursement—represented a sound policy direction, but required technical regulations, cost data, and a clear patient classification system to be effectively implemented.
Article Details
Keywords
Rare diseases; Health insurance; Co-payment; Referral system; Orphan drugs.
References
[2] Delaye J., Cacciatore P., và Kole A. (2022). Valuing the “Burden” and Impact of Rare Diseases: A Scoping Review. Front Pharmacol, 13, 914338.
[3] Nguengang Wakap S., Lambert D.M., Olry A. và cộng sự. (2020). Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet, 28(2), 165–173.
[4] 4Ng Q.X., Ong C., Chan K.E. và cộng sự. (2024). Comparative policy analysis of national rare disease funding policies in Australia, Singapore, South Korea, the United Kingdom and the United States: a scoping review. Health Economics Review, 14(1), 42.
[5] Taruscio D., Kodra Y., Ferrari G. và cộng sự. (2014). The Italian National Rare Diseases Registry. Blood Transfus, 12(Suppl 3), s606–s613.
[6] Schlangen M. và Heuing K. (2023). Rare diseases in Germany - Developments in the status of medical care. J Health Monit, 8(4), 7–16.
[7] Quốc hội khoá XV (2024). Luật số 51/2024/QH15 ngày ngày 27 tháng 11 năm 2024 về việc Sửa đổi, bổ sung một số điều của Luật Bảo Hiểm Y Tế. .
[8] Quốc hội khoá XV (2023). Luật Khám Chữa bệnh số 15/2023/QH15 ngày 09 tháng 01 năm 2023. .
[9] Bộ Y Tế (2022). Báo cáo tổng kết, đánh giá thực hiện Luật Bảo Hiểm Y Tế giai đoạn 2015-2020. .
[10] Wan E.L., Elkaim Y., Gao W. và cộng sự. (2023). Zebras Among Us: Advocating for the 30 Million Americans Living with Rare Disease. Med Sci Educ, 33(5), 1239–1242.
[11] Shafie A.A., Chaiyakunapruk N., Supian A. và cộng sự. (2016). State of rare disease management in Southeast Asia. Orphanet J Rare Dis, 11(1), 107.
[12] Merker V.L., Slobogean B., Jordan J.T. và cộng sự. (2022). Understanding barriers to diagnosis in a rare, genetic disease: Delays and errors in diagnosing schwannomatosis. Am J Med Genet A, 188(9), 2672–2683.
[13] Chung C.C.Y., Chu A.T.W., và Chung B.H.Y. (2022). Rare disease emerging as a global public health priority. Front Public Health, 10, 1028545.
[14] Mazzucato M., Visonà Dalla Pozza L., Minichiello C. và cộng sự. (2023). Estimating mortality in rare diseases using a population-based registry, 2002 through 2019. Orphanet J Rare Dis, 18(1), 362.
[15] Gunne E., McGarvey C., Hamilton K. và cộng sự. (2020). A retrospective review of the contribution of rare diseases to paediatric mortality in Ireland. Orphanet J Rare Dis, 15(1), 311.
[16] Delaye J., Cacciatore P., và Kole A. (2022). Valuing the “Burden” and Impact of Rare Diseases: A Scoping Review. Front Pharmacol, 13, 914338.
[17] Yang G., Cintina I., Pariser A. và cộng sự. (2022). The national economic burden of rare disease in the United States in 2019. Orphanet Journal of Rare Diseases, 17(1), 163.
[18] Chung C.C.Y., Ng N.Y.T., Ng Y.N.C. và cộng sự. (2023). Socio-economic costs of rare diseases and the risk of financial hardship: a cross-sectional study. Lancet Reg Health West Pac, 34, 100711.
[19] Hsu J.C., Wu H.-C., Feng W.-C. và cộng sự. (2018). Disease and economic burden for rare diseases in Taiwan: A longitudinal study using Taiwan’s National Health Insurance Research Database. PLoS One, 13(9), e0204206.
[20] Czech M., Baran-Kooiker A., Atikeler K. và cộng sự. (2019). A Review of Rare Disease Policies and Orphan Drug Reimbursement Systems in 12 Eurasian Countries. Front Public Health, 7, 416.
[21] Pichon T., Messiaen C., Soussand L. và cộng sự. (2023). Overview of patients’ cohorts in the French National rare disease registry. Orphanet J Rare Dis, 18(1), 176.
[22] Hsiang N.-C., Huang W.-F., Gau C.-S. và cộng sự. (2021). The impact of the rare disease and Orphan Drug Act in Taiwan. J Food Drug Anal, 29(4), 717–725.
[23] Ninomiya K. và Okura M. (2022). Nationwide comprehensive epidemiological study of rare diseases in Japan using a health insurance claims database. Orphanet J Rare Dis, 17(1), 140.
[24] Quốc hội khoá XIII (2014). Luật số 46/2014/QH13 ngày 13 tháng 06 năm 2014 về việc Sửa đổi, bổ sung một số điều của Luật Bảo Hiểm Y Tế. .