Only by improving the drug guarantee and standardized diagnosis and treatment can we open the "door of hope" for patients
This year, February 29 marks the 17th International Day for Rare Diseases. According to CCTV News, "Moon Child", "Porcelain Doll", "Lemon Baby" and "Butterfly Baby", these seemingly cute names are full of pain. Patients with rare diseases suffer unimaginably from ordinary people, but they often face problems such as difficult diagnosis, difficult diagnosis, and high cost.
Through the coldness and strangeness of medical terms, the cute name puts a soft, warm cloak on rare disease patients to relieve psychological stress. At the same time, it has also allowed this group of people to receive attention and love from others.
Rare diseases, as the name suggests, refer to those that have a low incidence. They may be hereditary, or they may be acquired due to environmental factors. Either way, it means a long and difficult battle for the patient.
What should be noted is that the difficulty of diagnosis, the high price of drugs or even the lack of drugs available, and the difficulty of medical protection are also boulders that weigh on the chests of rare disease patients and their families, leaving them breathless. Obviously, rare diseases are not only a medical problem, but also a social problem.
On the one hand, the "orphan disease" group is no longer the first group. Although the probability of rare diseases occurring in ordinary people is equivalent to tossing more than a dozen coins in a row, each time it is negative, in terms of quantity, China has registered a total of more than 780,000 cases of rare diseases, and more than 200,000 new patients every year. It is of practical significance to pay attention to rare diseases.
On the other hand, the significance of paying attention to rare diseases is not only about treating diseases and saving lives. Rare diseases are a window to understand the development of medicine, the course of diseases, the psychology of patients, and the improvement of the overall well-being of society.
Rare disease patients are like starfish stranded on the beach, eager for a change in their fate, and hope that experts, scholars and all walks of life can lend a hand. "Where we can, we deserve to help.
For rare diseases, it is necessary not only to improve the level of screening and diagnosis and treatment, invest more medical resources to meet the medical needs of patients, but also to include more rare disease drugs in medical insurance through negotiation and bidding, so as to reduce the medical burden of patients through multiple channels. Only by combining inclusive and preferential mechanisms can we provide good help to patients; Only by improving the drug guarantee and standardized diagnosis and treatment can we open the "door of hope" for patients
Not long ago, the latest version of the National Medical Insurance Drug Catalogue was adjusted to add 15 drugs for rare diseases outside the catalogue, covering 16 rare diseases and some rare diseases that have not been effectively solved for a long time. So far, more than 80 rare disease drugs** have been included in the list of drugs in the National Medical Insurance Drug List. This is expected to bring more good news to more than 20 million rare disease patients in China.
Because it is rare, it should be seen; Because it is rare, it should be cared for. The theme of this year's World Rare Disease Day is: "Focus on Rareness, Light up the Light of Life, Help the Weak, and Practice People First".
Na "rare", in order to survive, we must also wave the flag and shout for it! (Zhengguan commentator Han Jing).
Yellow River Comment Mailbox: zghhpl@163com）
Co-ordinator: Chen Ruosong.
Editor: Ren Sining.