{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T06:12:43Z","timestamp":1788502363454,"version":"build-2803163510"},"reference-count":40,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T00:00:00Z","timestamp":1788480000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>As China works to establish a mature medical security system by 2030, the heavy medical expenses faced by patients with rare diseases and the inadequacies in the existing protection mechanisms have become increasingly prominent and problematic, creating an urgent need for further research and policy solutions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives and methods<\/jats:title>\n                    <jats:p>This study used an explanatory sequential design. First, a questionnaire survey was conducted to investigate the status of the protection provided to patients by the three major security channels (government, market, and social organizations) and to assess the medical burden on patients. Then, interviews were conducted to identify the shortcomings of the three current major security channels, with the goal of developing an innovative mechanism for addressing the medical expenses of patients with rare diseases.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The results from the 720 questionnaires showed that, among rare disease patients who could be contacted through patient organizations and related networks, the three major protection channels currently available are still insufficient to cover their high medical expenses, resulting in a heavy financial burden. The 14 interviews revealed two types of deficiencies in the three channels. First, each channel demonstrated limited protection effectiveness. Second, coordination among the three protection channels was lacking.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Policy and mechanism innovations are needed at two levels. First, to improve the effectiveness of the three channels, the government should expand the breadth and depth of coverage and gradually equalize protection levels across regions; the market should lower access thresholds for patients, develop a multi-tiered product supply system, and improve operational risk prevention and control mechanisms, while social organizations should strengthen their capacity to raise charitable resources, establish a sustainable project operation model, and build collaborative networks. Second, at the level of cross-channel coordination, the expense-sharing responsibilities of each entity must be clarified, the types of expenses and target patient populations covered by multiple entities should be better defined, and a multi-entity collaborative reimbursement mechanism should be established. Ultimately, a collaborative, multi-entity mechanism for covering the medical expenses of patients with rare diseases should be established.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fpubh.2026.1847004","type":"journal-article","created":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T05:30:11Z","timestamp":1788499811000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Research on the innovation of medical expenses protection mechanism for rare disease patients in China"],"prefix":"10.3389","volume":"14","author":[{"given":"Meijin","family":"Song","sequence":"first","affiliation":[{"name":"Social Security Research Center, School of Politics and Public Administration, Wuhan University","place":["Wuhan, China"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yunhua","family":"Li","sequence":"additional","affiliation":[{"name":"Social Security Research Center, School of Politics and Public Administration, Wuhan University","place":["Wuhan, China"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2026,9,4]]},"reference":[{"key":"ref1","volume-title":"Research Report on the living Conditions of rare Disease Groups in China","author":"Li","year":"2014"},{"key":"ref2","author":"Huang","year":"2019"},{"key":"ref3","year":"2021"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"1198368","DOI":"10.3389\/fpubh.2023.1198368","article-title":"Is sub-national healthcare social protection sufficient for protecting rare disease patients? 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diseases in the Russian Federation","volume":"12","author":"Volgina","year":"2021","journal-title":"Front Pharmacol"},{"key":"ref20","doi-asserted-by":"publisher","first-page":"314","DOI":"10.5582\/bst.2019.01209","article-title":"Overview on social security system of rare diseases in China","volume":"13","author":"He","year":"2019","journal-title":"BST"},{"key":"ref21","doi-asserted-by":"publisher","first-page":"151","DOI":"10.1186\/s12939-024-02225-0","article-title":"Utilization and affordability of health insurance coverage for rare disease drugs in a first-tier city in Northeast China from 2018 to 2021: a study based on the health insurance claims database","volume":"23","author":"Wang","year":"2024","journal-title":"Int J Equity Health"},{"key":"ref22","doi-asserted-by":"publisher","first-page":"872","DOI":"10.1007\/s00103-022-03562-7","article-title":"Sustainable reimbursement of the B-centres for rare diseases in Germany-status quo and solution approaches","volume":"65","author":"Litzkendorf","year":"2022","journal-title":"Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"681","DOI":"10.1517\/21678707.2013.832201","article-title":"Rare diseases and orphan drugs in Japan: developing multiple strategies of regulation and research","volume":"1","author":"Song","year":"2013","journal-title":"Expert Opin Orphan Drugs"},{"key":"ref24","first-page":"40","article-title":"Welfare pluralism: welfare provision transformation from state to multi-sectors","volume":"6","author":"Peng","year":"2006","journal-title":"J Nankai Univ"},{"key":"ref25","year":""},{"key":"ref26","year":"2018"},{"key":"ref27","year":"2023"},{"key":"ref28","doi-asserted-by":"publisher","first-page":"410","DOI":"10.1186\/s13023-025-03933-8","article-title":"Spectrum and epidemiology of rare diseases in a Chinese natural population of 14.31 million residents, 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Part I: overview and impact on access and reimbursement in the private sector","volume":"10","author":"Axelrod","year":"2010","journal-title":"Am J Transplant"},{"key":"ref36","article-title":"Health care reform advances in 2024: plans to release the first edition of the category C pharmaceutical catalog within the year","year":"2025"},{"key":"ref37","year":""},{"key":"ref38","doi-asserted-by":"publisher","first-page":"289","DOI":"10.1186\/s13023-019-1261-8","article-title":"Rare diseases in Chile: challenges and recommendations in universal health coverage context","volume":"14","author":"Encina","year":"2019","journal-title":"Orphanet J Rare Dis"},{"key":"ref39","doi-asserted-by":"publisher","first-page":"e0140002","DOI":"10.1371\/journal.pone.0140002","article-title":"Access to orphan drugs: a comprehensive review of legislations, regulations and policies in 35 countries","volume":"10","author":"Gammie","year":"2015","journal-title":"PLoS One"},{"key":"ref40","doi-asserted-by":"publisher","first-page":"1162","DOI":"10.3390\/genes15091162","article-title":"The role of patient organizations in shaping research, health policies, and health Services for Rare Genetic Diseases: the Dutch experience","volume":"15","author":"Poortman","year":"2024","journal-title":"Genes"}],"container-title":["Frontiers in Public Health"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpubh.2026.1847004\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T05:30:13Z","timestamp":1788499813000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpubh.2026.1847004\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,4]]},"references-count":40,"alternative-id":["10.3389\/fpubh.2026.1847004"],"URL":"https:\/\/doi.org\/10.3389\/fpubh.2026.1847004","relation":{},"ISSN":["2296-2565"],"issn-type":[{"value":"2296-2565","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,4]]},"article-number":"1847004"}}