Local political advisers are seeking a long-termmechanism to support city's rare disease patients and ensure their drug supplies, according to a proposal filed by 27 CPPCC members to the Two Sessions.

Rare disease refers to any that affects a small percentage of the population. They have a wide range of, and often cause, serious conditions, which may require lifelong treatment. Since the makers of rare disease drugs are themselves very rare, drugs used for preventing and treating such diseases are called “orphan drugs."

Zeng Fanyi, one of the proposers, suggested a regional regulation on prevention and treatment of rare diseases during the Two Sessions last year and had positive feedback from the Shanghai Health Commission.

“In 2016, Shanghai issued a list of 56 rare diseases and included their drugs into city’s medical insurance system,” Zeng told Shanghai Daily.

“In May 2018, Shanghai Foundation for Rare Disease, entrusted by city's health commission, completed draft regulations on prevention and treatment,” she said. However, implementation of the legislation had been suspended.

The health commission's response to her proposal mentioned that the legislation was very complex, involving several government departments and more work was needed on what could be solved via legislation.

While the commission had promised to work with the other departments on the legislation, that would take time, Zheng said.

On December 31 last year, Zhejiang Province issued a notice on the drug supply mechanism and set up a fund for this purpose.Zeng and other CPPCC members advised the city government to come up with administrative regulations ahead of the legislation and work out a long-termmechanism.