Unfortunately, gaining access to care within the rare disease space can be difficult. There is often lesser education and awareness about rare conditions, less research performed, and poorer access to appropriate therapies. Orphan drug products—or therapies specifically intended for “orphan” and rare indications—can often be cost-prohibitive, with drug costs in the thousands or sometimes millions. While medical insurance can help, insurance does not always cover the necessary therapies or products.

There have been, over the years, issues with medical coverage and research related to rare diseases within China. These include high drug cost, access issues, and a general lack of agreement about the definition of orphan drug or rare disease. China released its first catalog of rare diseases in 2018. 

A research article in Frontiers in Pharmacology, published earlier in 2023, explains that:

Market availability rate was 44.3% by May 2022, and the average delay in drug approval in China compared to its orphan approval in the United States of America was 5.9 ± 6.07 years. Only 34.98% of the orphan drugs were considered affordable when compared with the national average disposable daily income in 2021, and drug affordability decreased during the past 5 years.

A Change in Rare Disease Drug Access

While rare disease drug access is less than optimal, China’s National Healthcare Security Administration is planning to make a change. In August 2023, the State Council Information Office shared that China is expanding its medical insurance coverage to better address the needs of the rare disease community. In addition to stocking rare disease medication in more than 200,000 hospitals across the country, over 50 of the 75 available rare disease therapies will now be covered under insurance. Further, China is working to improve admission and overcome entry barriers to better get the therapies into the hands of the people in need.

Currently, the full list of the available rare disease therapies has not yet been released. However, Patient Worthy will continue to update everyone through this article as the information on the available therapies is released.