Volume 5, Issue 1
School of Public Administration, Zhejiang University, Hangzhou 310012, China
Published： 30 June 2021 ，
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Zhang Yuehua,Cai Qingyin,Zhang Ling.Research on the Construction of Social Security Systems for Rare Diseases[J].Social Policy Review,2021,05(01):5-30.
Zhang Yuehua,Cai Qingyin,Zhang Ling.Research on the Construction of Social Security Systems for Rare Diseases[J].Social Policy Review,2021,05(01):5-30. DOI： 10.47297/wspsprwWSP2515-471001.20210501.
With the advancement of society and technological development
rare diseases—though having a low incidence and being relatively uncommon—have become increasingly recognized due to their high treatment costs. China's policies in the field of rare diseases are still in the nascent stage
lacking clear
reasonable
and comprehensive policy practices. This paper systematically reviews the definitions of rare diseases
the pricing of orphan drugs
and relevant social security policies
both domestically and internationally. It offers the following recommendations: (1) The definition of rare diseases in China should be based on the number of patients affected; (2) The government should increase support for the research and development of orphan drugs; (3) After including certain rare diseases in medical insurance
the government should conduct a thorough and accurate evaluation of the policy's impact
including its effect on medical insurance rates; (4) In the long term
the government should provide guidance and
to some extent
regulate reproductive behavior among rare disease patients.
Rare disease definitionPolicy discussionMedical security
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