Kevin Rufang Huang, president and founder of the Chinese Organization for Rare Disorders (CORD), outlines the findings of the first ever analysis into rare disease public insurance coverage across key cities in China.


On May 30, 2020, the China Organization for Rare Disorders (CORD) and the management consulting team at IQVIA released the ‘China Rare Disease Medical Insurance City Report 2020’ in Hangzhou, China. This report is the second collaboration between the two institutions, after the ‘China Rare Disease Drug Accessibility Report 2019’ (“Accessibility Report”).


Taking the city as the primary unit of investigation, the report’s central themes of investigation are

  • to showcase the current status of medical insurance and patient needs within the rare disease space (through a systematic review and analysis of national and local healthcare policy as well as survey results from nearly 2,000 patients with rare diseases), and,
  • based on the empirical experience of rare disease patients across different cities and regions within China, to explore the future direction of rare disease medical insurance mechanisms policy at the municipal, regional and even national levels in China.


The ‘China Rare Disease Medical Insurance City Report 2020’ (hereinafter referred to as “City Report”) contains six parts:


  1. The fundamental reasons the topic of rare disease urgently needs the attention of the government and society, including a discussion of what a rare disease

In May 2018, the five departments of the National Health Commission, the Ministry of Science and Technology, the Ministry of Industry and Information Technology, the National Medical Products Administration (NMPA), and the National Administration of Traditional Chinese Medicine jointly announced the first national list of rare diseases, which listed 121 rare diseases. This is the first time that the Chinese government has defined a rare disease through the form of a disease catalogue. According to epidemiological studies and public data estimates, the 121 rare diseases included on the first national list are expected to affect approximately 3 million patients within mainland China.


  1. A summary of the current state of China’s rare disease medical insurance, with unmet medical needs being the critical point, as well as a comprehensive review of the progress of China’s rare disease policies, the current availabilities of orphan therapies in China (including an overview of both the approval of orphan therapies as well as the listing of these therapies on the National and provincial Reimbursement Drug Lists)

Over the next three years, as China’s national drug reforms continue to progress steadily and incentivize the entry of innovative therapies, and through established initiatives like the ‘List of Urgently Needed Overseas New Drugs’ and the NMPA priority review and approval* channels for rare disease, many new orphan therapies, including those already approved in the US and Europe, are expected to further accelerate their entry into the Chinese market.

During this time, nearly a hundred rare disease drugs are expected to be approved and marketed in China, with 54 drugs expected to be approved for indications for which no reimbursed drug is currently available within the country. These clear unmet medical needs in rare diseases will increase the pressure on China’s rare disease medical insurance system and policies.


  1. A systematic layout of the evaluation framework and comprehensive evaluation results of our survey of rare disease medical insurance coverage at the city level.

Based on two dimensions (protection capability and protection level), 70 sample cities were divided into four major groups:

  • high protection capability and high protection level
  • high protection capability and low protection level
  • low security capability and high protection level
  • low security capability and low security level


  1. Objective and rigorous analysis of the current rare disease medical insurance situation of 70 sample cities in 9 sub-dimensions and 20 indicators of urban security.

The nine sub-dimensions include

  • Economic level
  • Financial support capacity
  • Medical insurance fund support capacity
  • Diagnosis and treatment capacity
  • Breadth of protection (i.e., how many orphan therapies are covered by the local system)
  • Diversity of protection scenarios (whether the municipal system covers multiple cost scenarios such as hospitalization, outpatient clinics, and dual-channel pharmacies)
  • Depth of protection (the level of actual reimbursement following the inclusion of the drug on the local drug reimbursement list)
  • Patient satisfaction with the availability of rare disease drugs
  • Patient satisfaction with the level of communication and feedback from the authorities


  1. The identification and analysis of the seven main models of rare disease medical coverage provision, including the choices made by different cities with different resource endowments and financial constraints.

The seven models are:

  • Special fund model
  • Critical illness negotiation model
  • Financial contribution model
  • Policy-based commercial insurance model
  • Medical assistance model
  • Medical insurance sporadic supplement model and
  • Independent declaration model


  1. Eight policy recommendations to further strengthen the protection of rare diseases at the local level over the next three years, and potentially, in the future, to further improve the rare disease system and policy development at the national level.

The eight policy recommendations were determined through the comprehensive analysis of the rare disease healthcare landscape in China, an understanding of the unmet needs within this space, and the identification of existing best practices across different cities.


In conclusion, this report explored rare disease medical insurance coverage in China through an analysis of local structures, beginning with the oldest system implemented in Tongling city in 2011 to the newest policy of Foshan city in 2020. The report has developed seven major models through the collection of data and multi-dimensional evaluations of 70 major cities over ten years of research and investigation.

The most surprising finding, perhaps, is that despite the relative wealth and economic development of the cities of Beijing and Shanghai, they did not fare as well as expected in our evaluation, so we hope that these two cities will invest more in this area to better serve the needs of rare disease patients.


To obtain a copy of the report, please contact CORD’s European Coordinator, Dr med Qi SUN at