"The electric wheelchair I was driving was knocked over by a small car
After the owner of the accident reported insurance
Leave me alone
I am a ALS patient and a low-income household
There is no money to hire someone to fight a lawsuit, and there is no money to treat injuries
I have no choice, please ask the procuratorate to administer justice for me. ”
"I'm already waiting for death
But they came before death."
When the 47-year-old ALS patient Chen Xinglian
When this sentence is spoken
Everyone present was moved
ALS is medically known as motor neuron disease
This condition is relatively rare
The prevalence is only 4 to 6 per 100,000
And the current medical conditions cannot be completely cured
He was diagnosed with ALS, a rare disease, at the age of 32
Chen Xinglian, who was once thought by doctors to live to be 40 years old
Every extra day is lucky
After the diagnosis of ALS
She signed the cornea donation consent form
But a sudden car accident
But it hurt her eyes
……
After being diagnosed with ALS
On January 1, 2023, the electric wheelchair driven by Chen Xinglian was knocked to the ground by a speeding car, resulting in a decrease in binocular vision (corrected visual acuity of 0.15) assessed as a grade 7 disability, and mild diplopia assessed as a grade 10 disability, resulting in a total of more than 400,000 yuan in various economic losses such as medical expenses, nursing fees, and judicial appraisal fees.
However, the party responsible for the accident refused to pay compensation, and the condition of ALS also deteriorated rapidly. What made Chen Xinglian even more desperate was that she signed a cornea donation consent form after she was diagnosed with ALS, but this car accident hurt her eyes......
After receiving clues about the case, the prosecutor of the Xiushui County Procuratorate in Jiangxi Province launched an "ice-breaking operation" for her in a race against death.
What does ALS feel like? "It should be like being 'frozen', my arms can't be lifted, and my feet can't move."
As her condition worsened over the years, Chen Xinglian began to feel weak and could only be accompanied by a wheelchair. The reporter held Chen Xinglian's hand, which was a cold, weak and boneless touch, and it seemed that he couldn't even feel the hardness of the bones. She also tried to retract her grip, but was unable to curl her fingers.
Chen Xinglian grew up in the county since she was a child, her father was a policeman in the county public security bureau, and her mother was responsible for taking care of the family. When she was 12 years old, her father died suddenly, which had a deep impact on Chen Xinglian.
According to Chen Xinglian, she has felt that her strength is much smaller than that of ordinary people since she was 27 years old, and she is easy to fall upstairs, and she went to hospitals at all levels to do various tests such as blood and muscles, but the cause was not identified, and the doctor speculated that it may be caused by malnutrition, and Chen Xinglian did not care. In 2008, the eldest brother, who suffered from the same symptoms, suffocated to death, which attracted the attention of his family. When she was in the hospital, Chen Xinglian underwent genetic testing and was finally diagnosed with ALS.
The doctor advised Chen Xinglian to treat actively, but the high cost of surgery and the slim hope of cure discouraged Chen Xinglian. She slowly accepted this fact herself, held a family meeting, and told her mother and older siblings that she wanted to donate her organs in the future, and the family was very sad, but they also understood her decision. Chen Xinglian signed an organ donation letter with the Jiangxi Provincial Red Cross Society, hoping to help more people in this way.
"My father was my role model, and when I was a child, I wanted to be a police officer like him, but now this dream can't be realized, but I have always received help and care from many people, and I hope to be able to do something good for society." Chen Xinglian said.
At the beginning of 2018, in an inconspicuous corner of Liangxin Community, Xiushui County, Chen Xinglian initiated the establishment of the "Xiucheng Heart Intimate Love Studio", calling on everyone to donate idle clothes and items at home to people in need, and often invite caring people to donate money and materials to the homes of people who are in distress due to serious illness.
In the past five years, this cottage of only a dozen square meters has received tens of thousands of pieces of clothing donated by more than 200 caring people, and more than 7,000 pieces of clothing have been sent out from here, benefiting more than 600 families.
In an inconspicuous corner of Liangxin Community, Xiushui County, Jiangxi Province, Chen Xinglian initiated the establishment of the "Xiucheng Heart Intimate Love Studio". In this small studio, there is a special corner dedicated to "shoes on one foot". This is for people with disabilities who only have one leg. (Photo source: provided by the interviewee)
Although Chen Xinglian is disabled, her heart is always full of love and sunshine. She is enthusiastic about public welfare and creates a love hut. Her deeds are ordinary but very touching, and they always inspire us to walk with love and be born to the sun. Huang Yougen, head of the Xiushui County Disabled Persons' Federation Office, said.
December 3, 2023 is the 32nd International Day of Persons with Disabilities, and Xiushui County commended the top ten self-improvement models for people with disabilities, including Chen Xinglian.
Defending the rights in a race against death
Due to ALS, Chen Xinglian was identified as a first-class disability, unable to work, a low-income household, and owed high debts due to treatment, and her life was still very difficult.
Zhu Yun, a full-time member of the inspection committee of the Xiushui County Procuratorate, clearly remembers Chen Xinglian's despair when she called her for the first time. "The electric wheelchair I was driving was hit by a small car, and the owner of the car who caused the accident reported the insurance and left me alone. I am a ALS patient and a low-income household, and I have no money to hire someone to fight a lawsuit, and I have no money to treat my injuries. Chen Xinglian confided in Zhu Yun helplessly.
On January 1, 2023, the electric wheelchair driven by Chen Xinglian collided with a small car driven by Wang, and it was determined that Wang was fully responsible for the traffic accident.
After encountering a traffic accident, Chen Xinglian was transferred to the First People's Hospital of Xiushui County, Xiangya Hospital of Central South University, and the First Affiliated Hospital of Nanchang University for diagnosis and treatment. On July 21, 2023, after judicial appraisal, Chen Xinglian's vision loss in both eyes (corrected visual acuity was 0.15) was assessed as a Grade 7 disability, and mild diplopia was assessed as a Grade 10 disability, resulting in a total of more than 400,000 yuan in various economic losses such as medical expenses, nursing fees, and judicial appraisal fees. The sudden change made Chen Xinglian's life even worse.
"When I found out that I had ALS, I signed the cornea donation consent form, but this car accident hurt my eyes." Chen Xinglian's words pressed on Zhu Yun's chest like a big stone, and she couldn't let go for a long time.
In view of Chen Xinglian's limited ability to act, insufficient legal knowledge, difficult economic conditions, and insufficient litigation capacity, the Xiushui County Procuratorate accepted Chen Xinglian's application for support for prosecution in accordance with the law. The procurator handling the case immediately questioned the parties, learned about the case, promptly fixed the evidence, actively assisted them in applying for legal aid, and helped to obtain the insurance information of the vehicle involved in the accident.
On August 16, 2023, the Xiushui County Procuratorate made a decision to support the prosecution, served a written opinion in support of the prosecution to the Xiushui County Court, and took into account Chen Xinglian's special circumstances and sent personnel to appear in court to participate in the first-instance trial of her lawsuit against Wang Moumou and the Xiushui Branch Company of an insurance company.
At the first trial, Chen Xinglian considered that she was unable to move, and in order to reduce the burden of litigation, she expressed her willingness to give up her claim for compensation for mild diplopia grade 10 disability. The Xiushui County Court made a first-instance judgment that the defendant Xiushui Branch Company of an insurance company should compensate Chen Xinglian more than 380,000 yuan within 10 days after the judgment took effect, and the defendant Wang Moumou should compensate Chen Xinglian 1,023 yuan within 10 days after the judgment took effect.
After the defendant appealed, the Xiushui County Procuratorate continued to follow up on the results of the second-instance judgment and the defendant's performance of the effective judgment. Finally, on December 22, 2023, the Jiujiang Intermediate People's Court rejected the appeal of an insurance company, Xiushui Branch, and upheld the first-instance judgment of the Xiushui County Court. Now, Chen Xinglian's follow-up treatment fees have been settled.
In addition, considering that Chen Xinglian was suffering from ALS, owed a high amount of debt due to treatment, and suffered a car accident, and her life was in trouble, the Xiushui County Procuratorate provided her with judicial assistance in accordance with the law and issued judicial aid funds to her.
Every small group should not be abandoned
"In the course of investigation and verification, we found that Chen Xinglian had suffered from ALS for many years and was unable to collect evidence independently and sufficiently, and she may lose the opportunity for judicial relief in the litigation." Zhu Yun told reporters that to this end, the Xiushui County Procuratorate relied on the civil support prosecution cooperation mechanism established with the county court and the judicial bureau, gave full play to its professional strength in a timely manner, guided and assisted Chen Xinglian to supplement relevant key evidence around the statutory prosecution conditions, and sent a letter to the county judicial bureau to assign a legal aid lawyer for Chen Xinglian to ensure the substantive equality of the parties' litigation rights.
At the same time, we gave full play to the advantages of procuratorial integration, and provided all-round assistance to Chen Xinglian from multiple dimensions such as judicial assistance and social assistance, so that patients with rare diseases could truly feel the judicial temperature and procuratorial warmth.
On February 5, 2024, the reporter followed Xiong Xiaomei (third from left), a representative of the National People's Congress and a spinning car stopper of Xincheng Textile Company in De'an County, Jiangxi Province, and the prosecutor of the Xiushui County Procuratorate of Jiangxi Province to visit Chen Xinglian. (Photo source: provided by the interviewee)
On February 5, 2024, the reporter followed the prosecutor of the Xiushui County Procuratorate to visit Chen Xinglian. Under the witness of Xiong Xiaomei, a deputy to the National People's Congress and a spinning car stopper of the Xincheng Textile Company in De'an County, Jiangxi Province, the procurator issued judicial aid to Chen Xinglian on the spot.
"Every small group should not be abandoned, let alone the prosecution. We also hope that through this case, the whole society will have a deeper and more comprehensive understanding of groups suffering from rare diseases such as ALS like Chen Xinglian, and give more care, love and help to special groups in all aspects from social security to medical assistance. Zeng Liang, deputy procurator general of the Xiushui County Procuratorate, said.
Zhu Chanjuan, chairman of the Xiushui County Disabled Persons' Federation, said in an interview with reporters that by supporting the prosecution, the procuratorate has opened a door for vulnerable groups to defend their rights, and has really done practical things for the masses, reflecting the concept of the procuratorate providing justice for the people.
Promote legislation related to rare diseases
"Through visiting the prosecutor handling the case, I learned for the first time about rare disease groups like Chen Xinglian. Chen Xinglian's ALS is a chronic and serious disease, which is usually life-threatening, and the practical difficulties such as difficulty in diagnosis, lack of medicine, and high treatment costs also bring a huge burden to patients and their families. Not only that, patients often encounter problems such as domestic violence, abuse, lack of care, and difficulty in reimbursement by medical insurance. Xiong Xiaomei was very emotional.
She suggested that it is not only necessary to strengthen basic research in the field of rare diseases and improve the level of diagnosis and treatment, but also to accelerate the promotion of legislation related to rare diseases, and ensure the treatment and normal life of patients with rare diseases from the mandatory provisions on rare disease identification, drug production, medical security, social insurance, and individual rights and interests.
However, the diagnosis and management of rare diseases remains one of the greatest medical challenges facing humanity, affecting the lives of more than 300 million patients worldwide.
In recent years, the mainland has attached great importance to the diagnosis and treatment and management of rare diseases, and the national departments of health, drug administration, medical insurance, and finance have successively issued a number of policies, regulations and measures to promote the diagnosis, treatment and management of rare diseases. The diagnosis and treatment of rare diseases is a huge system project, and the existing laws and regulations are not perfect, and there is a lack of legal definition, constraints and guarantees for the definition, discovery, identification, release, diagnosis, treatment, drug development and supply, and medical security of rare diseases.
"ALS is a rare neuromuscular disease that specifically affects motor neurons, most of which are genetic diseases and are difficult to solve medical problems. It is hoped that in terms of medical education, education and training on rare diseases will be strengthened, so that medical students can deepen their understanding, identify and diagnose rare diseases, and avoid inappropriate treatment. Jin Li, a representative of the National People's Congress and president of Fudan University, said in an interview with reporters that as a representative of the field of genetics research, he has long been concerned about the research and treatment of rare diseases, and also put forward suggestions related to ALS during the two sessions of the National People's Congress this year.
Wu Peixin, a member of the National Committee of the Chinese People's Political Consultative Conference (CPPCC) and Secretary of the Party Committee of Peking Union Medical College Hospital, said that at present, the independent innovation and supply capacity of rare disease drugs in mainland China is still weak. He suggested that the legal and policy environment should be optimized, the legislation on rare diseases should be accelerated, the legal definition of rare diseases should be clarified, and the drug policy for rare diseases should be solidified in the form of law.
"In order to protect the legitimate rights and interests of rare disease patients, comprehensively improve the diagnosis and treatment and management of rare diseases in mainland China, implement the people-centered development philosophy, and contribute to Chinese-style modernization, it is imperative to carry out rare disease legislation." A number of experts interviewed by reporters said that it is necessary to speed up research on rare diseases and promote the legislation of rare diseases.
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Source: "Fangyuan" magazine WeChat public account
Author: Liu Ya, Zou Qiongqiong, Zhou Baiqun
Video: Xiushui County Procuratorate, Jiangxi Province
Editor: Li Wenrui