On February 26, the “Caring for Rare Diseases, Lighting Up Lives, Rare Diseases Day Love Theme Event” initiated by the Rare Disease Branch of Jiangsu Medical Association was held in Nanjing, and a special fund for rare diseases in Jiangsu Province was established. The purpose of this event is to gather forces from various parties. Through the efforts of various organizations such as medical insurance and social welfare organizations, more people can learn about rare diseases, care for the rare disease group, and let the multi-level security system allow patients to have medicines and medicines. Paul, to send hope to more families with rare disease patients.
Jia Jia (pseudonym) is 17 years old and is a patient with Pompe disease. On the day of the event, she also came to the scene. Yang Shiwei, chief physician of the Department of Cardiovascular Medicine of Nanjing Children’s Hospital, who has been in charge of Jiajia’s treatment, told reporters that “Pompe disease” is currently curable, but requires lifelong treatment. This enzyme replacement therapy method requires intravenous enzyme replacement therapy every two weeks. After half a month, the child’s enzyme slowly degraded and disappeared, and it needs to be re-infused. “The medical expenses for this disease are also astronomical. Take a child weighing 10 kilograms as an example, the medical expenses for a year are at least 600,000 yuan, and the average family cannot afford it at all!”
Jiajia is lucky Yes, she has persisted since she was diagnosed with Pompe disease at the age of 9. In July last year, Jiangsu had a policy for the protection of drugs for rare diseases, and with the assistance of various funds, the medical expenses can basically be controlled within 100,000 yuan per year. Although a lot, but this is still a lot less than the previous treatment costs. In August 2021, Jiajia finally started medication treatment at Nanjing Children’s Hospital for the first time.
Zhang Aihua, chairman of the Rare Diseases Branch of the Jiangsu Medical Association and vice president of Nanjing Children’s Hospital, told reporters that for the diagnosis and treatment of rare diseases, the Jiangsu Provincial Medical Insurance Bureau and other departments jointly issued relevant policies last year. Diagnosed with rare diseases such as Gaucher disease, glycogen storage disease type II (Pompe disease), Fabry disease (Fabry disease), spinal muscular atrophy (SMA) or mucopolysaccharidosis, included The first batch of rare disease drug protection objects. If the guaranteed object treats the first batch of five rare diseases in a designated treatment institution, the designated drug expenses incurred in outpatient and inpatient treatment within a settlement year shall be paid by the rare disease drug insurance fund according to the cumulative cost calculation and the payment ratio is 80%-90%. %.
Zhang Aihua said that with the joint efforts of many parties, the family pressure of patients with rare diseases will be further reduced. Now, in addition to the medical insurance policy of the Jiangsu Provincial Medical Insurance Bureau, at the end of last year, relevant units also issued a commercial insurance policy such as “Su Huibao”, so that the part paid by parents in addition to the rare disease medical insurance policy of Jiangsu Province can be effectively implemented. lighten. “Today, we have launched a special assistance project for rare diseases. This project is to further reduce the cost of the patient’s out-of-pocket part in addition to the previous guarantee policy, so that they can afford the medicine and cure the disease!” Zhang Aihua said.
Correspondent Yu Lulu
Nanjing Morning News/Love Nanjing reporter Qian Ming