Representatives of the National People's Congress proposed to strengthen medical security for rare diseases, the National Health Insurance Administration replied Policy.

Recently, the State Health Insurance Administration issued on its official website "Responses to Recommendation No. 6365 of the Third Session of the 13th National People's Congress".
In response to the NPC representative's proposal to "recommend strengthening China's medical security policy for rare diseases", the State Health Insurance Administration replied that the State Health Insurance Administration attaches great importance to the medical security of patients with rare diseases, and constantly explores the establishment of a drug protection mechanism for rare diseases.
present, the vast majority of rare disease treatment drugs, as well as haemophilia, idiopathic pulmonary fibrosis, amyotrophic lateral sclerosis and other rare diseases are in the medical insurance directory.
In 2019, the national health insurance directory adjustment focused on the treatment of rare diseases and other major diseases, the primary carnitine deficiency, young Parkinson's and other rare diseases of the drug added to the catalog, and through access negotiations, pulmonary hypertension, C-type Nemanpico disease and other rare diseases into the catalog, the price dropped significantly.
statistics, 121 rare disease treatment drugs, has been listed in China and has more than 50 kinds of adaptive drugs, more than 40 have been included in the national medical insurance drug catalog.
The State Health Insurance Administration also pointed out that from the current stage of the overall development of the medical insurance system, the needs of the masses for the treatment of diseases and the support capacity of the medical insurance fund, the current basic medical insurance mainly meets the basic medical needs of the people.
compared with the millions per capita annual medical expenses of some patients with rare diseases, the current level of funding of more than 800 yuan per capita for basic medical insurance, especially for urban and rural residents, is not enough to meet the needs of patients with rare diseases.
limited to the level of economic and social development and the ability of health insurance funds to support, some very expensive treatment drugs for rare diseases have not yet been included in the scope of medical insurance.
In accordance with the decision-making and deployment of the CPC Central Committee and the State Council, the medical insurance department has recently launched a new round of adjustment of the medical insurance catalogue, which will be adjusted according to the fund's ability to pay, so as to better meet the drug demand of the insured people.
The State Administration of Medical Security said that the next step will be to carry out in-depth the Opinions of the State Council of the CPC Central Committee on Deepening the Reform of the Medical Security System, consolidate the function of medical assistance support on the basis of the overall strengthening of the comprehensive guarantee of the triple system, and study and explore the establishment of a government-led, multi-funding and social participation mechanism for the protection of rare diseases.
At the same time, strengthen coordination among departments, improve the level of medical and treatment services for patients with rare diseases, enhance the ability to guarantee the supply of medicines for rare diseases, do a good job in reviewing and evaluating rare diseases, speed up the development of commercial health insurance, encourage commercial insurance institutions to provide more protection products for the people, including patients with rare diseases, and jointly safeguard the basic medical rights and interests of patients with rare diseases.