Can cause paralysis and blindness. This disease is more common in young and middle-aged people
In 2013, Maomao (pseudonym), who was studying in university, found that she often felt tired. She used to be able to climb the stairs three steps in one step and needed to hold the handrails upstairs; her limbs did not follow the instructions of the brain and could not walk in a straight line, so she always bumped into her side. 'S classmate; can't sleep at night, can't wake up during the day; even in one exam, she can see clearly by putting her eyes on the computer.
Maomao thought it was a bit strange, but didn't delve into it.
It was not until a physical education class that Maomao felt her body's center of gravity was unstable and felt strong discomfort after putting on roller skates. She went to the hospital for treatment and was finally diagnosed with multiple sclerosis (MS).
On December 20, the "2020 Comprehensive Social Survey Report on Patients with Multiple Sclerosis in China" (hereinafter referred to as the "Report") was officially released.
The research project was co-sponsored by the China Rare Diseases Alliance and Peking Union Medical College Hospital. Mao Mao shared this experience as a patient representative.
Multiple sclerosis is an immune-mediated chronic inflammatory demyelinating disease of the central nervous system, which occurs in young and middle-aged adults. It is currently one of the most common disabling neurological diseases in young adults in the world.
Once treatment is delayed, it will increase the patient's risk of inconvenience, which may eventually lead to disability.
In China, multiple sclerosis is a rare disease and has been included in the "First List of Rare Diseases" in May 2018.
"We call on all sectors of society to join hands to alleviate the availability and affordability of drugs for patients with multiple sclerosis, to promote disease awareness among doctors and patients, reduce the rate of misdiagnosis, and continue to improve the diagnosis and treatment services for multiple sclerosis. , To help patients benefit from both physical and psychological dimensions, and fundamentally improve the quality of life of patients.” said Li Linkang, executive director of the China Rare Disease Alliance.
Nearly 90% of patients are unemployed or out of school due to multiple sclerosis
"A human nerve is like a wire, and the myelin wrapped in the outer layer of the nerve acts like an insulating layer to protect and maintain the normal conduction of nerve function. When it is attacked by the autoimmune system, it will be affected if the myelin sheath is lost. Nerve signal transmission. Since the central system is the main nervous system in the human body, patients with multiple sclerosis have various clinical manifestations. Common symptoms include: decreased vision, diplopia, limb sensory disturbance, limb movement difficulties, bladder or rectal dysfunction, etc. Professor Xu Yan from the Department of Neurology of Peking Union Medical College Hospital said.
Since multiple sclerosis is a serious, lifelong, progressive, and disabling central nervous system disease, failure to diagnose and treat in time can lead to severe disabilities such as paralysis and blindness.
The results of the "Report" show that more than 43% of patients cannot take care of themselves completely and need care by others. As many as 88.5% are unemployed or out of school due to multiple sclerosis. The diagnosis and treatment level of multiple sclerosis in my country needs to be improved urgently.
Compared with many rare diseases that are fatal and currently uncurable, MS patients can control the recurrence and progress of the disease and return to normal life as long as they adhere to effective treatment in a timely manner.
However, in my country, patients with multiple sclerosis have a long diagnosis cycle and difficult diagnosis, and misdiagnosis and off-site diagnosis (high-quality resources are concentrated in large cities, some patients cannot be diagnosed in ordinary hospitals in their hometowns, and they need to travel long distances to the top three hospitals in large cities to be diagnosed. — —Reporter's Note) is the primary cause of the long diagnosis time.
Professor Cui Liying of the Department of Neurology of Peking Union Medical College Hospital called for long-term and systematic training of local doctors across the country, especially in areas with underdeveloped medical resources, to improve the understanding of the disease by grassroots doctors and establish collaboration Mechanism, relatively concentrated diagnosis and treatment and two-way referral for patients, give full play to the radiation leading role of high-quality medical resources, improve the comprehensive diagnosis and treatment capabilities of MS, and early standardized treatment can enable patients to obtain a better prognosis and prevent recurrence.
Nearly one-third of patients stopped taking the drug due to concerns about the efficacy and side effects of the drug
Multiple sclerosis has an acute attack period and a remission period. The control of the remission period is the key window period of treatment. Patients need long-term use of disease-modifying treatment drugs (DMT) to reduce the risk of recurrence. DMT drugs are very useful for preventing recurrence and delaying disease progression. Importantly, it is the standard treatment drug in remission period recommended by domestic and foreign guidelines and consensus.
At present, the clinically available drugs cannot meet the treatment needs of patients.
Mao Mao told reporters from China Youth Daily and China Youth Daily that for patients, choosing drugs cannot completely reduce the probability of recurrence, because the effects of drugs on everyone are different, and some patients stop taking the drug because of side effects.
The "Report" shows that among the 117 patients who have used DMT drugs and then stopped the treatment, the proportion of patients who stopped treatment due to the drug itself reached 1/3, and 18.8% of them were because of the unsatisfactory effect of the drug or changed Other drugs were discontinued, 15.4% of people discontinued the drug because of intolerance to the drug and serious side effects.
"Several medicines, including the oral medicines currently listed in the National Medical Insurance List, are clearly not allowed to be used during pregnancy. This disease is more likely to occur in young women aged 20-40. At this time, we are in need of fertility. Although I don’t have a boyfriend yet, I’ll get married next year, so I’ll be more worried.” Maomao told reporters about her concerns.
“Patients with multiple sclerosis need personalized treatment plans. Currently, among the DMT drugs that have been on the market in my country, there are few types of drugs available for patients to choose from. The proportion of patients who stop treatment due to unsatisfied drug treatment needs is high, which is clinically urgent. New effective and safe treatment methods are needed to delay the progression of the disease to disability." said Professor Dong Huiqing, Department of Neurology, Xuanwu Hospital, Capital Medical University.
Economic and psychological burden becomes unbearable for MS patients
In addition to the extremely high risk of recurrence, the disease also brings a great economic and psychological burden to patients and their families.
The "Report" shows that the average age of the patients is only 34 years old, and more than 60% of the adult respondents have a college degree or above. Those who should have become family pillars, but nearly 90% of them are unemployed, out of school due to illness and unable to serve the family. To make more contributions to society, but also to spend high treatment costs.
In addition, in the evaluation of patients' mental health status, 83% of patients with multiple sclerosis have different degrees of psychological problems, and more than 90% of patients have varying degrees of fear in their future lives.
"In 2018, the average out-of-pocket medical expenditure of the 656 multiple sclerosis patients interviewed exceeded 46,000 yuan, accounting for 45.18% of their family’s average annual income. This has exceeded the warning line for catastrophic medical expenditures (ie, family out-of-pocket expenses). Medical expenditures account for 40% or more of the family’s ability to pay), which obviously has caused tremendous pressure on financial affordability and family relationships,” said Professor Dong Dong of the Chinese University of Hong Kong.
Maomao told reporters that some patients are afraid of getting an injection and are under great pressure on their skin and psychology. They simply switch to oral medications, but everyone's physique is different, and they will experience physical discomfort after changing the medication.
Some patients also had to change their medicines due to financial pressure.
"Patients can keep stable with one kind of medicine. In theory, it should not be changed easily. The medicine will not take effect immediately. It may take 3-6 months. During this period, we may relapse, and everyone will be very worried. , And also worry about whether the medicine is really effective for everyone."
Although there is a certain risk of changing the medicine, after the medicines used previously were withdrawn from the medical insurance, Maomao still changed the medicine under the balance. "According to the reimbursement ratio in Beijing, I used to pay less than 20,000 yuan at my own expense every year. Without reimbursement, every year It will cost about 100,000 yuan, which is quite stressful.” During the long-term injections and medications, Mao Mao and his patients summarized a small technique. Under normal circumstances, the injection of medications needs to be done every other day.
They occasionally injected once every 3 days, and the disease has not relapsed.
"This is no way."
Wang Yiou, secretary general of the Beijing Pain Challenge Charity Foundation, called on the society to provide all-round care and support to MS patients: “Multiple sclerosis is currently facing many difficulties from diagnosis to treatment, and the improvement of disease diagnosis and treatment is inseparable from multilateral support and attention. We call on all sectors of society to exert their strength, improve the assistance and guarantee system, increase their strength and confidence in fighting diseases, and help them actively integrate into society and embrace a healthy life."
China Youth Daily·China Youth Daily reporter Zhang Manyu Source: China Youth Daily