For that endless bill

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Severe hemophilia A is a rare disease that affects 5-10 people per 100,000 people. Once the onset of the disease requires medication for life, relying on blood transfusion or injection of recombinant coagulation factors for treatment, patients can only become friends of the blood. The only luck was that I found a new medicine that suits him. I can rely on lifelong injections of elemizumab to stay healthy and live the same life as ordinary people. As he grows older, the cost will increase exponentially. When he reaches 60 kg, the monthly medical expenses will reach nearly 100,000 yuan. Shao He is going to spend the rest of his life on this endless bill. After the outbreak in Guangdong, Shaohe Hospital entered an emergency state and accepted 13 newly diagnosed patients with pneumonia. Shao He wanted to apply for the front line, but he was worried that he would not be able to go home for a month. He is the only person in the family who can give his son a full intramuscular injection every half a month. Nine months ago, his son was diagnosed with severe hemophilia A, and Shao felt that his life had completely changed. Severe hemophilia A is a rare disease that affects 5-10 people per 100,000 people. Once the onset of the disease requires medication for life, relying on blood transfusion or injection of recombinant coagulation factors for treatment, patients can only become friends of the blood. The only luck was that I found a new medicine that suits him. I can rely on lifelong injections of elemizumab to stay healthy and live the same life as ordinary people. The injection dose of a new drug is based on body weight. At present, the injection dose of the new drug is 10 kg, 30 mg every 14 days, and 8100 yuan. 16,200 yuan a month is the total salary of Shao and his wife. The cost will increase as his son grows. When he grows to 60 kg, the monthly medical expenses will reach nearly 100,000 yuan. This medicine is not covered by health insurance and needs to be purchased at your own expense. No matter how long the bill is, it cannot be compared with the health and safety of children. Shao He is going to spend the rest of his life on this endless bill. 1. 8 meters by 2 meters. In this safe area, lively activities are relatively free. There are cabinets of several dozen centimeters high on both sides of the big bed of mom and dad, and the other two are fences to surround the bed. This fence will not be opened when I remember clearly in bed. If parents want to go to the bathroom, they will first sit on the bedside table and then get out of bed. There are few "right angles" in the home. Table corners, cabinet corners and sharp corners are wrapped with sponge. In addition, when you get up and play, you will wear a small cotton hat and knee pads, just like a little athlete preparing to participate in ice sports. These measures are to avoid all possible collisions, because once a collision occurs, they leave large and small scars on the brains of children 1 year old and 10 months old. More serious is bleeding. If you blow off the wound, blood will flow immediately. He has hemophilia A, a congenital deficiency of clotting factors, and he may develop spontaneous bleeding or joint swelling even without a lump. The most terrible thing is intracranial hemorrhage, which, once it occurs, can be life threatening. Prior to this, Shao He, an emergency intensive care doctor, had only seen the disease in medical textbooks. On May 11, 2018, five departments including the National Health Council jointly developed the "First Rare Diseases List", which includes hemophilia. Although there are more than 100,000 hemophilia patients in China, as of September 2018, there is no accurate data on the total incidence, treatment, joint injury, inhibitor incidence and molecular epidemiology of hemophilia in China. When I learned to walk clearly, the ecchymosis started to become severe. When he was one year old, he would suddenly fall while walking. He fell and turned blue. Shao He didn't care much at first. He consulted his orthopaedic colleague and got a suggestion to "let him take a break". But this recurring situation, he felt increasingly wrong. He checked the information and concluded that the child's symptoms were consistent with hemophilia. When blood was drawn from a local hospital for examination, it was difficult to find the child's blood vessels, so seven or eight injections were made. The blood was drawn, but it couldn't be stopped, and it continued to flow. Shao He knew "this is very close". When he returned home to wait for the result, he, his wife, his parents and the whole family all cried. The results showed that the activated partial thromboplastin time (APTT) was 110 seconds, which was nearly three times the normal range. With luck, the family drove to Guangzhou On May 11, five departments including the National Health Council jointly formulated the "First Rare Diseases List", which includes hemophilia. Although there are more than 100,000 hemophilia patients in China, as of September 2018, there is no accurate data on the total incidence, treatment, joint injury, inhibitor incidence and molecular epidemiology of hemophilia in China. When I learned to walk clearly, the ecchymosis started to become severe. When he was one year old, he would suddenly fall while walking. He fell and turned blue. Shao He didn't care much at first. He consulted his orthopaedic colleague and got a suggestion to "let him take a break". But this recurring situation, he felt increasingly wrong. He checked the information and concluded that the child's symptoms were consistent with hemophilia. When blood was drawn from a local hospital for examination, it was difficult to find the child's blood vessels, so seven or eight injections were made. The blood was drawn, but it couldn't be stopped, and it continued to flow. Shao He knew "this is very close". When he returned home to wait for the result, he, his wife, his parents and the whole family all cried. The results showed that the activated partial thromboplastin time (APTT) was 110 seconds, which was nearly three times the normal range. With luck, the family drove to Guangzhou On May 11, five departments including the National Health Council jointly formulated the "First Rare Diseases List", which includes hemophilia. Although there are more than 100,000 hemophilia patients in China, as of September 2018, there is no accurate data on the total incidence, treatment, joint injury, inhibitor incidence and molecular epidemiology of hemophilia in China. When I learned to walk clearly, the ecchymosis started to become severe. When he was one year old, he would suddenly fall while walking. He fell and turned blue. Shao He didn't care much at first. He consulted his orthopaedic colleague and got a suggestion to "let him take a break". But this recurring situation, he felt increasingly wrong. He checked the information and concluded that the child's symptoms were consistent with hemophilia. When blood was drawn from a local hospital for examination, it was difficult to find the child's blood vessels, so seven or eight injections were made. The blood was drawn, but it couldn't be stopped, and it continued to flow. Shao He knew "this is very close". When he returned home to wait for the result, he, his wife, his parents and the whole family all cried. The results showed that the activated partial thromboplastin time (APTT) was 110 seconds, which was nearly three times the normal range. With luck, the family drove to Guangzhou

After pumping water and seeing the disease, you need to inject the prothrombin complex and stay in the hospital for observation. Shao and his wife took turns holding the child. The three of them sat in the emergency room all night until the next afternoon. It was the most difficult night since he was born. Shao He didn't know where the hope was for the first time. Born in the countryside, he completed part of his college studies and became a doctor proud of his parents. He is only 33 years old and has many unfinished research projects. He wants to learn more detailed subjects. But that night, his mind was empty. He just felt that his ideals and ambitions were "put aside", "porcelain dolls", "tofu people" and "glass people". In past reports, the media referred to people with hemophilia as such. Only injection of coagulation factors can significantly extend life. In addition to calling his parents, the one-year-old can only express his pain by crying and "not wanting". He was afraid of an injection and would start to resist before going to the hospital. The injection process is more troublesome. Grandpa and grandma, father and mother always hold his hands and feet together, so that he will not run the needle to find a blood vessel faster. At such times, Shao felt useless. He can save the lives of other patients in the intensive care unit, but he cannot relieve the pain of his son. Each time he looked for a blood vessel, he injected seven or eight times. A month later, worse news came. I remember on the 26th exposure day (one shot per day is equivalent to one exposure day), a relatively high level of inhibitor was found in the local hospital, which means that his own immune system has already entered the clotting factor as an invading enemy and Began to resist and repel it. He cannot rely on blood transfusions to continue treatment. Colleagues even gently advised Shao to give up, "If he loses too much, he will have an infusion reaction, which is very troublesome. I'm sorry to say too clearly to you." As a colleague, Shao He soon understood, But he was not reconciled. I like laughing very much. When I don't have an injection, I often laugh as if I forget the pain. After learning to walk, Shao He always saw his son standing at the door to meet him. There are two doors in the house. When the first door opened, I could hear the noise clearly and knew that my parents were back. He stood guard at the door and stared at Shao as soon as he entered. The young doctor's father was looking for new medicine. In the first month after the diagnosis, his wife did not know when Shao would go to bed. Every day after work, he started to check the data. At 2 am, she woke up and found that his computer was still on. When he was found to have injected esomeprazole, Shao He saw the dawn. In November 2017, the drug was approved for registration in the U.S., specifically for the treatment of factor ⅷ inhibitors in patients with hemophilia a. Later, it was quickly adopted by China The Drug Administration was listed on the priority approval list and entered the "green channel". As of December 2018, the company was officially listed in China, but it is not covered by medical insurance. At your own expense. On the recommendation of the provincial hospital, Shao He found an IoT pharmacy in Shanghai, which is the only place he can buy injections. For patients with equally striking symptoms, the new drug is one of the few hopes. too expensive. 30 mg, 8100 yuan, for a child weighing 10 kg, only half a month's dose. The wages of Shao and his wife are only enough to cover the child's medical expenses. Now the family has to rely on grandparents to provide food and drinks. The work of the emergency intensive care unit is very intensive. On weekly rest days, Shao He had a hard time finding a suitable part-time job. In order to earn money for his son to buy medicine, he wanted to change jobs, but he had no other skills other than medical treatment. The wife is relatively better. She found a higher paid job but did not apply in the third round of interviews, although she has concealed the fact that she has a son with hemophilia. "If people know what's going on in your home, they will be more worried." The two men were very upset. The rare communication before going to bed at night are interviews about his wife. So far, in an emergency, the only large amount of mutual assistance comes from Alipay's mutual fund, which pays 300,000 mutual funds at one time. As early as last January, he joined the world's largest mutual aid group, participated in many activities to share mutual aid, and helped more than 10,000 people. One week after his son was diagnosed on June 8, he submitted an application for mutual aid "If people know what's going on in your home, they will be more worried." The two men were very upset. The rare communication before going to bed at night are interviews about his wife. So far, in an emergency, the only large amount of mutual assistance comes from Alipay's mutual fund, which pays 300,000 mutual funds at one time. As early as last January, he joined the world's largest mutual aid group, participated in many activities to share mutual aid, and helped more than 10,000 people. One week after his son was diagnosed on June 8, he submitted an application for mutual aid "If people know what's going on in your home, they will be more worried." The two men were very upset. The rare communication before going to bed at night are interviews about his wife. So far, in an emergency, the only large amount of mutual assistance comes from Alipay's mutual fund, which pays 300,000 mutual funds at one time. As early as last January, he joined the world's largest mutual aid group, participated in many activities to share mutual aid, and helped more than 10,000 people. One week after his son was diagnosed on June 8, he submitted an application for mutual aid

These 21 rare diseases fall into the scope of mutual assistance. The confirmed diagnosis is investigated and verified by a professional inspection team. At the same time, the applicant's work location, family situation and medical expenses are also filled in by the professional survey company. Within three months, it completed archiving, access, and information checks. On September 7, his situation was posted on the Common Wealth homepage, where all members shared a common fund. Eight days later, he received 300,000 yuan, enough for his son to take medicine for a year. So far, I have also become one of 30 rare rescued patients. For the main cost of rare diseases, 300,000 yuan is still a drop in the ocean. If his son grows up well, he will need nearly one million yuan of medicine a year. Requests from several families with rare diseases caught the attention of common wealth staff. During a face-to-face interview at the end of December, they came to Shao He's home to learn more about the "expansive" cost of treating rare diseases. The Common Wealth team decided to continue doing something for families with rare diseases. On March 2, Au Pair launched the "Love Pass" function to provide more channels of love for 29 rare patients. Members of the Reciprocal Wealth Program can participate in donations totaling up to 100,000 yuan. Huzhubao encourages members to make rational donations. The donation amount of each member is limited to 0.1-2 yuan. Whether or not to donate depends entirely on individual wishes. After reaching 100,000 yuan, the channel will automatically close. Whether successful or not, Shao He appreciates the love of community members. Just 23.5 hours later, 89,958 members of the Common Treasure completed the transfer of love to the soul. The mutual aid model brought a sense of security to Shao He. This made him do his best when working on the front line and felt the support of strangers behind him. "During the epidemic, I have a responsibility to go to the front." Before leaving home, he posted hundreds of notes and cartoon clip art in his favorite places, turning children's attention at home into oil poems, not his company. On February 29, a suspected patient was transferred to the intensive care unit. He put on thick protective clothing and took a picture of his family. In the closed security world, I don't know what happened outside. He saw the picture on his mother's phone and pointed at his father in protective clothing and said, "Abel!" Warm and safe. This is a vivid impression of "white" less than two years old. My family has a white doll, soft and fleshy. He likes it very much. Because his mother told him, "As long as you take it out, the disease will be cured." As long as you don't take the needle out, Dad is what he likes. As long as mom and dad go home, he will follow behind like a little tail. If Dad was lying in bed, he would crawl from side to side of the stomach over and over again, like climbing a soft mountain bag. This is a rare time for Shao He to relax with his parents. If he stands still, he will fall on his father's belly. The bed was soft and the stomach was soft. He won't be hurt. Haven't seen enough? Press and hold the QR code to pay attention to the WeChat public account of People. More exciting stories are waiting for you.

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