Original title: The "sky-high price of drugs" for rare diseases is included in the medical insurance, saving more than 40 yuan in drug costs for children.
Chutian *** Jimu News reporter Liu Xun correspondent Gao Chenchen Zhang Jingyi.
An 8-year-old boy was diagnosed with a dangerous rare disease and his life was in danger. Fortunately, the life-saving drug for this disease, eculizumab, was included in the new version of the medical insurance catalogue and was officially implemented on January 1 this year. Originally, a drug cost more than 20,000 yuan, but after being reimbursed by medical insurance, each drug only costs about 1,000 yuan. On January 10, the child was injected with eculizumab and his condition was controlled. He is also the first child in Hubei to benefit from this ** drug after it entered the medical insurance.
Boys suffer from rare diseases.
The 8-year-old boy Xiao Yu (pseudonym) is from Xiantao, Hubei Province, and is usually in good health and has a cheerful personality. During New Year's Day this year, he suddenly developed abdominal pain, diarrhea, and headache, and after 2 days of rest, his symptoms worsened. On January 4, Xiao Yu developed symptoms such as vomiting, high fever, and "soy sauce urine" and was sent to a local hospital**. Due to his serious condition, he was transferred to Wuhan Children's Hospital that night.
After multidisciplinary consultation such as the Department of Intensive Care Medicine and the Department of Nephrology of the hospital, Xiao Yu was diagnosed with atypical hemolytic uremic syndrome. This is a very dangerous rare disease, with an incidence rate of only 7 per 1 million, and has been included in the first batch of rare diseases in China.
Wang Xiaowen, director of the Department of Nephrology of Wuhan Children's Hospital, said that atypical hemolytic uremic syndrome is a type of systemic thrombotic microangiopathy, which can lead to serious consequences such as microvascular hemolytic anemia, thrombocytopenia, and acute kidney injury. Due to the poor prognosis, the mortality rate of patients in the acute exacerbation phase is as high as 25%. Even if the patient survives the acute phase, there is a high risk of developing end-stage renal disease or even death.
Watching my son being admitted to the intensive care unit made me feel completely blindsided. Xiao Yu's mother, Ms. Liu, said. It was three or four o'clock in the morning, and she was alone outside the ICU, crying while searching for ** plan with her mobile phone. She was even ready to sell her house, saying that she would raise money to treat her child.
The first child in Hubei Province benefited.
Xiao Yu is lucky. At the same time as his urgent treatment, Wang Xiaowen also determined the latest situation of the drug. It is understood that eculizumab, a special drug for this rare disease, will be included in the new version of the national medical insurance catalogue at the end of 2023, and the new drug will be officially implemented from January 1 this year. This means that the drug has been negotiated by medical insurance, and the ** has dropped significantly, from 2 per vial in the past060,000 yuan, until now after being reimbursed by medical insurance, each is only about 1,000 yuan.
According to the ** plan, Xiao Yu needs to inject 2 eculizumabs at a time, once a week for the first 3 weeks, and then every half a month, ** for half a year.
Ms. Liu calculated an account: if the drug is used before the price reduction, the drug cost for one cycle is close to 500,000 yuan; After the drugs are included in the medical insurance catalog, excluding the reimbursement part of the medical insurance, the personal self-payment is only more than 20,000 yuan.
On January 10, Xiao Yu was injected with the drug in the Department of Nephrology of Wuhan Children's Hospital. After three weeks of **, his jaundice, anemia and other indicators improved. Ms. Liu said that her son's face has become rosy, his spirit has improved, and the whole family has seen hope again.
It is understood that Xiao Yu is the first child in Hubei to benefit from the drug after it was included in the new national medical insurance catalog.
We look forward to benefiting more children.
On January 29, Xiao Yu was discharged from the hospital and went home, and then returned to the hospital at the specified time**.
The Jimu News reporter saw that on the same day, another child with atypical hemolytic uremic syndrome was also admitted to the Department of Nephrology of Wuhan Children's Hospital, ready to receive eculizumab injection**.
The good news of the price reduction of special drugs has rekindled the hope of many children and parents. Wang Xiaowen lamented that more families of children will benefit in the future. She said that in the past 10 years, Wuhan Children's Hospital has treated more than 20 children with atypical hemolytic uremic syndrome. Eculizumab was approved for preclinical trial in China in November 2022, and according to the diagnosis and treatment standards, most children receive hormones or immunosuppressants**, but there are some children with severe kidney damage who also need to undergo plasma exchange**, and the quality of life is very poor. The adjustment of the special drug** is great news for the children and their families.
In recent years, China has been committed to improving the accessibility of drugs for patients with rare diseases. At the end of 2023, 15 new drugs for rare diseases will be added to the National Drug Catalogue for Basic Medical Insurance, Work-related Injury Insurance and Maternity Insurance (2023), covering 16 rare diseases.
Every small group should be seen and noticed. Wang Xiaowen said. It is of great significance to ensure the use of drugs for patients with rare diseases and realize the implementation of medical insurance, and it is expected that more children with rare diseases will overcome the disease and regain their health.
*: Chutian***