Health Times reporter Qiu Yue
"Self-payment is only more than 300 (yuan)?" At noon on January 14, when Yang Hua (pseudonym) was discharging her husband from the Huizhou Central People's Hospital in Guangdong Province, she looked at the "Guangdong Provincial Medical Hospitalization Fee Bill" in her hand and couldn't believe her eyes. She was so happy that she didn't have time to wait for the elevator, ran directly to the third floor, and shared the good news with the attending doctor for the first time.
Yang Hua's 41-year-old husband and 9-year-old daughter are both patients with Fabre's rare disease. On January 13, Xiao Jun (pseudonym) injected four agasaclyses α concentrated solution for injection (Ruipujia) at the Huizhou Central People's Hospital, and after enjoying benefits such as medical insurance reimbursement and medical assistance, the out-of-pocket cost of the hospitalization was 347.81 yuan.
Courtesy of respondents.
Fabre disease is a rare X-linked hereditary lysosomal storage disease with a prevalence of about 1 in 100,000, and patients are often disabled or even die from nerve, heart, kidney, and cerebrovascular damage.
In 2020, the first special drug "Fabuzan" in China was approved for listing, and the price of 35mg mg / stick was 38,000 yuan. In 2021, another special drug "Ruipujia" was listed, and the price of 3.5 mg / stick was also as high as 12180 yuan.
In August 2021, Yang Hua's husband fell ill again, and the fifth cerebral infarction was admitted to the ICU, although the person was rescued, but the language, action and other functions were seriously damaged. "There are studies that say that the average life expectancy of bray patients is 41 years old, my husband is 41 years old, I don't know how much time we still have."
Yang Hua calculated an account for the Health Times reporter, the treatment of Fabre patients needs to inject specific drugs 2 times a month, calculated by her husband's weight of 65 kg, if the medication is sufficient, each injection requires 2 Fabuzan or 4 Repuga. "No matter what kind of drug costs at least more than 100,000 yuan a month, it is more than 1 million yuan a year, even if the company has donated drugs, this is not something that our family can afford."
On January 1, 2022, the new version of the 2021 National Medical Insurance Drug Catalogue was officially implemented, and Ruipujia was among them.
"After enjoying medical insurance reimbursement, coupled with the medical assistance and preferential medical insurance we applied for, I calculated it myself, and my husband's cost alone may be more than 20,000 yuan a year, and I immediately hospitalized him after I prepared the money." Yang Hua said, "I didn't expect that this time the full injection of Ruipujia reimbursement after self-payment is only more than 300 yuan, which means that as long as 7, 8,000 yuan a year is enough, I am so happy, too grateful to the country!" ”
"My biggest wish is that my husband and children can get effective treatment for their illness, and no matter how hard it is, it is worth it!" Now that the medicine has entered the medical insurance, I feel full of hope for the future! Yang Hua said, "My husband's body is currently gradually recovering, you can walk two steps on crutches, you can also take care of yourself when you eat, I want to wait for half a year when he can fully take care of himself, I will take my daughter to inject Rui Pujia, our family of three days will soon get better!" ”
