Known as the "king of childhood cancers", neuroblastoma is a type of cancer that originates in early-stage nerve cells and is more common in children under 5 years of age. In China, 1 in 100,000 children aged 1-14 years will die. In December 2019, Liu Hong, a three-year-old Sichuan girl, unfortunately became one in 100,000. Recently, Liu Hong's father, Liu Yang, contacted a reporter from the New Yellow River, who said that an immune drug gave them hope to save their children, but the high cost became a stumbling block to hope.
First use of immune drugs, two years of "respite"On April 17, in a small area not far from Shandong Provincial Cancer Hospital, a reporter from the New Yellow River met Liu Hong's family. Father Liu Yang drives the computer and accompanies his daughter while doing some part-time work. The mother, Zhang Huijuan, records the child's platelet levels.
Liu Hong was playing with dolls in her room, her hair had fallen out due to chemotherapy, and her body was very thin. Liu Yang closed the door and closed the curtains of the window, isolating the content of the conversation with the reporter from Liu Hong's world. Liu Yang hopes that her daughter's life will be simpler, not to worry about the future, and the couple will also try their best to provide their daughter with the life of an ordinary child, and she has the "Gooka" and Barbie dolls that her peers like.
Liu Hong plays in the rental house
Liu Yang told reporters that at the beginning of 2019, after their daughter was diagnosed with neuroblastoma in West China Second Hospital of Sichuan University, they began the road of treatment. After four rounds of chemotherapy, he was transferred from Chengdu to Beijing in order to remove the tumor in the abdominal cavity. In 2020, during the period of epidemic prevention and control, Liu Yang will spend one night in the waiting hall of the station, and get up early the next day to register for consultation.
Later, a friend told him that there was a doctor in Hangzhou who could try, and Liu Yang went to Hangzhou again to seek medical treatment, but did not receive a definite answer. Wandering between Beijing and Hangzhou, hoping and disappointed again and again, Liu Yang received a call from a hospital in Zhejiang that was willing to perform tumor removal surgery for Liu Hong, and the family of three immediately flew to Hangzhou.
Zhang Huijuan insisted on recording the child's platelet content
In April 2020, Liu Hong's body had just recovered after surgery, and at the recommendation of a patient, they came to Shandong Provincial Cancer Hospital and received chemotherapy for nearly half a year and two hematopoietic stem cell transplants. After the treatment, on New Year's Day 2021, the family of three returned to Chengdu. At that time, under the support of the "Twin Countries and Nine Measures" policy, the Hainan Boao Lecheng International Medical Tourism Pilot Zone allowed patients to use new drugs that had not been marketed in China, and one of the immunotherapy drugs called "GD2" was regarded as hope by many neuroblastoma patients. After taking targeted drugs at home for three or four months, the family of three flew to Hainan again to use immunotherapy drugs, which cost more than 1.5 million yuan in total.
The treatment also brought them the dawn of victory, and Liu Hong successfully returned to kindergarten after treatment, restarting her life as an ordinary child. It only lasted for two years, and at the beginning of this year, her mother Zhang Huijuan found that her daughter's eye sockets were swollen, and she set off again to Shandong Provincial Cancer Hospital.
From Patient to "Comrade-in-Arms" Similar pathways to health care and the same financial challengesMost of the time, Liu Hong plays by himself. But on the way to the doctor, she was not alone.
Zhang Zhengyang's family and Liu Hong's family are friends and "comrades-in-arms". They went from the West China Second Hospital to Hangzhou together, and then to Jinan, and they also went to Hainan to seek medicine. The difference is that Zhang Zhengyang was not so lucky in his first immunotherapy, and since his illness, he has hardly had a chance to breathe.
Taking medicine is a compulsory course for Zhang Zhengyang every day
Zhang Zhengyang lives in a shared house in a village two or three hundred meters away from the Provincial Cancer Hospital, and each room of less than 10 square meters is inhabited by silent parents and unknown children. In the oppressive atmosphere, the sound of children chasing and fighting in the corridor is particularly loud.
Like many patients, Zhang Zhengyang also shaved his head, because of the medication, his body was swollen, because he touched the facial nerve during the operation, one cheek was high and swollen, squeezing his eyes into a slit. At 10:00 a.m., it was time for Zhang Zhengyang to take medicine. After obediently taking the medicine from his mother, he took it as usual, and then ran next door to play games with the children.
Her mother, Tian Xiaoyan, said she was grateful for the game's presence that helped distract Mr. Zhang. "The child already understands something, and if he stops, he will be anxious, repeatedly asking why the platelet count can't rise, why he has been seeing a doctor for so long, and when he can go back to school to find his classmates. We can't answer these questions. If he doesn't ask, he doesn't have to answer. Tian Xiaoyan let out a long sigh.
Zhang Zhengyang participated in public welfare activities to realize his dream of being a soldier
At present, Tian Xiaoyan and Zhang Huijuan are waiting for the increase in platelet content. According to medical requirements, the safest standard for chemotherapy is 100×10⁹/L and the minimum is 80×10⁹/L. Zhang Zhengyang's platelet content is only 37×10⁹/L, because the tumor is growing, the two evils are balanced, and at a huge risk, Tian Xiaoyan signed a letter of responsibility and gave her son a go.
At present, Zhang Zhengyang's treatment expenses have cost more than 2 million yuan, and the debt is about 7.8 million yuan.
Immunotherapy drugs, which start at one million, were not included in medical insurance last yearLiu Hong and Zhang Zhengyang are now taking lorlatinib, which is an adult drug for the treatment of lung cancer in China, and the original price of a box of drugs is about 15,000 yuan, and non-lung cancer patients cannot be included in medical insurance. Under huge economic pressure, they turned to the patient channel and bought it at a price of more than 7,000 yuan a box, which has the dual risk of unstable sources and difficult to guarantee the efficacy of the drug.
The immunological drug datuximab β
The immune drug that made Tian Xiaoyan and Zhang Huijuan see hope is the β of datuximab (ch14.18/CHO, second-generation 14.18), which was launched in 2021 and was included in the country's "First Batch of Clinically Urgently Needed Overseas New Drugs", and it is also the first GD2 monoclonal antibody immunotherapy drug approved for the treatment of neuroblastoma in China. The cost of one round of immunization for children is about 300,000 yuan, and five rounds of treatment is 1.5 million yuan. According to the child's weight and other physiological indicators, Liu Hong's second immunotherapy is predicted to require about 1.5 million yuan, and Zhang Zhengyang is about 2 million yuan. Two families with little or no stable source of income are facing an insurmountable economic hurdle.
At first, in order to protect the child's self-esteem and privacy, Liu Yang never accepted interviews with the outside world, nor did he tell his relatives and friends around him. Seeing that his family was about to be empty, this interview was a New Yellow River reporter he took the initiative to contact.
"From a selfish point of view, we look forward to media exposure to raise more medical expenses for children, but seeing that so many patients are facing the same problem, we look forward to calling through the media to make the β of datuximab included in the medical insurance as soon as possible. Liu Yang said that even if the medical insurance cannot be fully reimbursed, it is enough to reduce part of the financial burden of the parents of the affected children.
The application materials of pharmaceutical companies emphasize that neuroblastoma has been included in the "Second Batch of Rare Disease Catalog"
At the end of 2023, the 2023 version of the National Medical Insurance Drug List was announced, and the β of datuximab was not included. The main reason is that neuroblastoma was included in the "Second Batch of Rare Disease Catalog" in September 2023, and the application rules announced in June of that year required rare diseases to be included in the "First Batch of Rare Disease Catalog", with a time difference of 3 months. The pharmaceutical companies that produce the β of datuximab did not apply according to the application conditions for rare disease drugs, but applied for general new drugs. The New Yellow River reporter inquired about the application materials of the applicant companies in 2023, and they emphasized that neuroblastoma has been included in the "Second Batch of Rare Disease Catalog" in the "Basic Introduction to the Diseases Treated".
Even though the β of datuximab is not included in the medical insurance, this catalog update still gives hope to more families of children with neuroblastoma, because 15 off-list rare disease drugs have been successfully negotiated/bid for this adjustment, covering 16 rare diseases, and the number of rare diseases has reached a new high. "This shows that our rare disease patients are seen and remembered by the state. We hope that the process of daluximab β included in medical insurance can be faster, and for children with neuroblastoma, every minute and second is a chance of life. Zhang Huijuan said.
If you would like to reach out to the two children in the article, Liu Hong and Zhang Zhengyang, you can contact their families through the following methods. Zhang Huijuan (Liu Hong's mother) 13458538307 (same number on WeChat) Tian Xiaoyan (Zhang Zhengyang's mother) 13689087997 (same number on WeChat)
Reporter: Liu Jie Intern: Li Han Photographer: Liu Jie Proofreader: Gao Xin Editor: Zhao Xiaoxin