China enhances rare disease fight via increased medicine insurance coverage

A total of 13 rare-disease drugs have been added to the latest edition of China's medical insurance drug catalog, bringing the total amount of such medicines covered by medical insurance in the country to more than 90.

The newly-added items on the catalog, which was jointly released by the National Healthcare Security Administration (NHSA) and relevant authorities, include drugs for rare diseases such as hypertrophic cardiomyopathy, intractable epilepsy, and paroxysmal nocturnal hemoglobinuria.

Due to their ultra-low incidence, a limited number of patients, and high research and development costs, rare diseases have long remained areas of less focus in the healthcare field. Through inter-agency efforts, China has accelerated the construction of a pathway to prevent and treat such diseases – with more accessible and affordable drugs now available to patients.

As part of this effort, the NHSA has adjusted the national medical insurance catalog for seven consecutive years since its establishment, expanding the scope of coverage to include rare diseases such as spinal muscular atrophy, Gaucher disease and myasthenia gravis in recent times.

"It is an expectation shared by both doctors and patients to see more high-quality and life-saving medicines added to the country's medical insurance," said Zhang Shuyang, president of the Peking Union Medical College Hospital.

In addition to the provision of more reimbursed drugs, China has also advanced its national collaboration network for rare-disease diagnosis and treatment. As of October 2024, more than 400 medical institutions had joined the network, which features medical referral and telemedicine mechanisms and covers all provincial-level regions across the country.