On October 14, 2023, the press conference of “Breaking the Last Mile – Research Report and Policy Recommendations on the Implementation of Rare Disease National Drugs (2023)” was successfully held by Chinese Organization for Rare Disorders (CORD) in Shanghai!
Since the Chinese National Medical Insurance Administration – China Healthcare Security (CHS) launched the National Medical Insurance Negotiations for Drugs (referred to as “National Negotiation”) in 2016, the inclusion of patented and exclusive drugs that are clinically necessary and effective through negotiation has become a necessary part of the dynamic adjustment of the medical insurance catalogue. Among them, rare disease drugs are an important part of the annual national drug list. With the strong support of the National Medical Insurance Administration, eligible rare disease drugs have been included in the medical insurance drug list. With the annual negotiation of national medical insurance and the orderly implementation of related policies, the level of medical protection for patients with rare diseases has been greatly improved. However, some areas or treatment drugs still face the challenges in terms of hospital admission, and difficulties in reimbursement, making it complicated for patients with rare diseases to benefit from the medical treatment and medical insurance they deserve. Based on this, the Chinese Organization for Rare Disorders (CORD) has carried out this special report study, in order to gain an in-depth and comprehensive understanding of the actual implementation of rare disease drug policies and patient accessibility.