Multiple sclerosis
Multiple sclerosis is a disease of the nervous system in which the protective lining of the nervous pathways of the brain and spinal cord is destroyed. With such a disease, the brain actually loses its connection with the rest of the body, which leads to the development of progressive muscle weakness and paralysis.
Multiple sclerosis is a severe chronic autoimmune disease associated with damage to the myelin sheath of the nerve fibers of the brain and spinal cord. The disease is accompanied by problems with vision, coordination and a number of other neurological disorders.
Chronology of events
2021: Novartis buys multiple sclerosis drug developer Cellerys
In early June 2021, Swiss drug maker Novartis signed an agreement to acquire Cellerys, a Zurich-based startup that conducts research into therapies to combat multiple sclerosis. Cellerys was founded in 2015 by multiple sclerosis researchers as a subsidiary of the University of Zurich. Novartis did not provide any financial details of the deal. Read more here.
Distribution in Russia and in the world
2023
Multiple sclerosis diagnosed in 7 thousand Russians
In 2023, multiple sclerosis was diagnosed in approximately 7 thousand Russians. For comparison, a year earlier, this disease was detected in 6.8 thousand citizens of the Russian Federation. Such data at the end of May 2024 was published by the Ministry of Health of Russia.
Multiple sclerosis is an ailment in which the immune system attacks the tissues of the brain and spinal cord. As a result, there is an autoimmune destruction of myelitis - the fatty membrane that covers nerve cells. This disrupts the patency of electrical impulses directed along the nerves to other parts of the body. The disease provokes disorders of cognitive, emotional, motor, sensitive or visual functions. The causes of multiple sclerosis as of 2024 have not been established, but the risk of its occurrence may increase if there are relatives with this ailment.
According to the Minister of Health of Russia Mikhail Murashko, in 2024, taking into account modern medical technologies and approaches in the organization of neurological care, an updated version of clinical recommendations in the field of multiple sclerosis was prepared. Their introduction is expected to reduce the likelihood of the disease, its relapses, as well as return to the active life of patients suffering from severe forms of this disease.
We see that in recent years the number of patients with multiple sclerosis has not decreased: in 2023, almost 7 thousand Russians were diagnosed with this diagnosis. At the same time, the number of patients registered with the dispensary is increasing due to the effectiveness of therapy, - notes Murashko. |
At the same time, Aleksei Boyko, director of the Institute of Clinical Neurology, head of the neuroimmunology department of the Federal Center for Brain and Neurotechnologies of the FMBA of Russia, says that the number of cases of multiple sclerosis has increased amid the COVID-19 pandemic. In Russia, as of the beginning of 2024, about 150 thousand patients suffer from this disease.[1]
2.5 million patients in the world and 85 thousand in Russia
According to the World Health Organization, available as of May 2024, there are more than 2.5 million people with multiple sclerosis in the world. In Russia, this figure exceeds 85 thousand people. The annual increase in patients with multiple sclerosis is 7.7%.
2020: 53.6 thousand people in Russia have the status of disabled people with multiple sclerosis
Elmira Vergazova, Director of the Department for the Organization of Medical Care and Sanatorium-Resort Affairs of the Ministry of Health of the Russian Federation, said in early July 2020 that Russia had begun developing clinical recommendations for the treatment of patients with multiple sclerosis and expressed hope that the recommendations would be adopted in the near future.
The head of the Department for Disability Affairs of the Ministry of Labor of the Russian Federation Ligomin said that by the beginning of July 2020 in Russia 53.6 thousand people have the status of disabled people with multiple sclerosis, 179 of them are children. The ministry is working on a bill on comprehensive rehabilitation, including patients with multiple sclerosis, which will include standards taking into account the specifics of individual diseases, he concluded.
Vergazova noted that the Ministry of Health of the Russian Federation is taking all necessary measures for the regulatory regulation of issues related to the provision of assistance to patients with multiple sclerosis. In particular, there is a procedure for organizing medical care for patients with neurological diseases, as well as several procedures for organizing specialized care.
The whole tragedy of the situation is that these are young people of working age who become disabled as a result of the disease, and their quality of life suffers significantly, "she concluded (quoted by TASS).[2] |
According to 2020 data, women have a 2-3 times higher risk of developing MS compared to men.
2019: Ministry of Health of the Russian Federation: the number of patients with multiple sclerosis has been growing for 3 years in a row
The number of patients with multiple sclerosis increased in Russia from 80.5 thousand people in 2017 to 85.2 in 2019. The indicator has been increasing for three years in a row, said Elmira Vergazova, Acting Director of the Department for the Organization of Medical Care and Sanatorium-Resort Affairs of the Ministry of Health of the Russian Federation, on July 3, 2020.
According to her, there is also a trend towards an increase in hospital mortality in patients with multiple sclerosis. In 2017, the mortality rate was 0.5%, and in 2019 - already 0.61%. Among the patients with MS there are 709 children, "which is also an alarming signal and requires the adoption of some measures in children's health care," Vergazova added.
2015:2 million people in the world and 78 thousand in Russia
Multiple sclerosis is a common but still not fully understood disease by 2018. In the world, about 2 million people suffer from it, and the disease affects mainly people who have reached adulthood. According to a study by the All-Russian Public Organization of Disabled People with Multiple Sclerosis (IBRS LLC), the disease most often occurs in people aged 36-50 years.
As of 2015, multiple sclerosis is commonly diagnosed between the ages of 20 and 40 "Management [3].. The disease rarely debuts in children and those over the age of 50.
According to the Ministry of Health of the Russian Federation for 2015, there are about 78 thousand patients with multiple sclerosis in the country, and the incidence rate is growing: 6.7 thousand people make such a diagnosis for the first time annually. IBRS notes that 78.7% of patients do not work, and the overwhelming majority (76.7%) call the inability to work due to poor health the main reason for lack of employment.
According to independent experts, the real number of patients with multiple sclerosis in Russia is more and reaches 150 thousand people. This discrepancy is explained by the difficulties of diagnosis: to clarify the diagnosis, an MRI scan is necessary, often in dynamics, that is, repeatedly. And if in large cities there are no difficulties with the diagnosis of the disease, then in remote regions and rural areas it is not possible to diagnose multiple sclerosis due to the lack of appropriate equipment in medical institutions.
Causes of the disease
Discussions are underway about the reasons for the appearance of this disease: some scientists suggest its viral nature, and some believe that genes are to blame for everything. "Among the reasons for the development of multiple sclerosis are bacterial infections, viral infections, various injuries, the influence of toxic substances, as well as radiation, excess body weight, environmental factor, stress, genetic predisposition, said in June 2020 neurologist JSC" Medicine "(clinic academician Reutberg), Anna Terekhova.
Symptoms
The symptoms of multiple sclerosis are diverse and include:
- motor disorders;
- lack of coordination;
- sensation of tingling, numbness of the limbs;
- speech disorders;
- body pain;
- increased fatigue;
- dizziness;
- vision problems;
- deterioration of intellectual abilities.
Forms of the disease
Multiple sclerosis is associated with abnormal immune system activity against the myelin sheath of nerve cells (isolating and supporting sheath around nerve cells) in the brain, spinal cord, and optic nerves, resulting in inflammation and subsequent damage. Damage to these nerves can cause a variety of symptoms, including muscle weakness, fatigue, and vision problems, and can eventually lead to progressive disability.
Relapsing-remitting multiple sclerosis (RRMS) is the most common form of the disease, characterized by the presence of exacerbations, that is, episodes of the appearance of new or aggravation of existing neurological symptoms, with subsequent periods of remission. Approximately 85% of MS patients are initially diagnosed with RRMS. The majority of those diagnosed with RRMS end up with secondary progressive MS (SPMS), in which the disability progresses continuously in patients with [4] over time[5].. Relapsing forms of MS (RMS) include RRMS and active SPMS if relapses continue.
In about 15% of cases, a primary progressive type of the course of the disease is diagnosed, in which, without proper therapy for 10-15 years, a person loses the ability to move, serve himself without assistance, which leads to disability. Most people with MS present with their first symptoms in their 20s and 40s, making multiple sclerosis the leading cause of disability in young adults unrelated to injury.
In any form of MS, disease activity is noted, that is, the inflammatory process and the constant loss of nerve cells in the central nervous system, even when there are no obvious clinical manifestations or tangible deterioration.
Diagnostics
2024: RTK Radiology will create a module of the Unified Radiological Information System to detect the dynamics of multiple sclerosis
RTK Radiology LLC and the Medical Association of Doctors and Centers of Multiple Sclerosis and Other Neuroimmunological Diseases (MAVRS) signed a Partnership Agreement with the aim of developing digital technologies in the field of neurology and developing a special module of the Unified Radiological Information System (ERIS). About this "RTK Radiology" reported on March 27, 2024. Read more here.
2023
The number of patients with multiple sclerosis in Russia increased by 18%
In 2022, multiple sclerosis was diagnosed in 6.8 thousand Russians, which is 18% more than two years earlier. At the same time, the number of patients with such a disease registered at the dispensary increased by 6.5% over the same period. The Minister of Health of the Russian Federation Mikhail Murashko cited such data at the end of May 2023.
According to him, effective diagnosis, qualified assistance from specialists of neurologists and awareness of the patients themselves about ways to combat multiple sclerosis helps to gain control over the disease and delay disability for years. Modern approaches in the organization of neurological care can reduce the likelihood of the disease, as well as its relapses and return to the active life of patients suffering from severe forms of multiple sclerosis, Murashko added.
He did not name the total number of Russians suffering from this disease. According to experts cited by GxP News, by the end of 2022 the number of such persons is from 80 to 150 thousand. There are 2.8 million people in the world with this diagnosis.
In studies conducted in 2022, it turned out that the course of multiple sclerosis differs between men and women in terms of the severity of inflammatory and neurodegenerative components. Differences are smoothed out after 50 years, which may indicate the role of sex hormones.
Among the drugs for the therapy of multiple sclerosis there are Russian developments. For example, at the end of 2022, PSK Pharma received a registration certificate for Teriflunomide PSK with the same active substance. The drug suspends the processes of division of a number of cells of the immune system involved in pathological processes, reduces the development of the disease and the total volume of brain lesions.[6]
Artificial intelligence now helps Moscow doctors diagnose multiple sclerosis
To Moscow Another service began to work in, artificial intelligence which recognizes multiple sclerosis on the magnetic resonance imaging head. brain Timely diagnosis and prescription of therapy can significantly slow the progression of this chronic autoimmune disease of the nervous system. In total, in May 2023 artificial intelligence , he finds pathologies in radiation diagnostics in 21 clinical areas. This was announced on May 17, 2023 by the Deputy Mayor for Moscow Social Development. Anastasia Rakova More. here
Treatment
Multiple sclerosis is a chronic disease for which in 2020 there is no method of complete cure.
Multiple sclerosis may not have pronounced symptoms, and the diagnosis is often made several years after the formation of the first focus. The peculiarities of the course of the disease explains the lack of mechanisms for its treatment.
According to the All-Russian Public Organization of Disabled People, in 2018, more than 40% of patients with multiple sclerosis do not seek medical help, or do it very rarely, once every few years. The main reasons, according to patients, are insufficient information about the disease, the inaccessibility of this type of medical care in their regions and disbelief in the success of the medical procedures.
In the treatment of MS, it is important to reduce disease activity as quickly as possible and slow down the rate of disability progression [7]..
A significant increase in the prevalence of MS worldwide in recent years is due, among other things, to an increase in the information content of diagnostics. Detection of the disease at an early stage allows you to slow down the progression of the disease and prevents the early disability of patients. And competently selected drug and physiotherapeutic therapy and individual neurorehabilitation programs, which include physical therapy, massage, physiotherapeutic treatment, work with a medical psychologist, allows a person with multiple sclerosis to lead a full life.
Drug therapy
The main method of treating multiple sclerosis for 2018 is drug therapy aimed at accelerating recovery from exacerbations, changing the course of the disease and controlling symptoms. Interferon beta-1b, interferon beta-1a and glatiramer acetate are the most widely used drugs of the first choice.
The import substitution program stimulated the emergence of Russian drugs, which already in 2017 began to massively replace imported analogues. For example, a drug with the international non-proprietary name "glatiramer acetate," developed by the pharmaceutical company Nativa, replaced the original drug of foreign production. In Russia, drugs for the treatment of multiple sclerosis are purchased at the expense of the state budget under the 7 Nosologies program - 24% of the WNV budget is allocated for this.
"Multiple sclerosis remains a socially significant problem in modern society. This disease steadily leads to disability and disability, and, therefore, to a decrease in the level and quality of life. Pharmaceutical companies around the world, including Russian ones, are constantly working to create effective drugs for the treatment of multiple sclerosis. But in this case, we all understand that one drug treatment of this disease cannot do: patients need support and additional psychotherapeutic exercises, "said Alexander Malin, General Director of Nativa. |
Most doctors and patients in surveys speak of the lack of effectiveness of existing approaches to the treatment of multiple sclerosis. New, original studies could be a meaningful step toward improving the quality of life for patients with the disease.
2023: Russian Ministry of Health registers Biocad drug for multiple sclerosis therapy
The Ministry of Health of the Russian Federation has registered Russian pegylated interferon beta-1a for the therapy of multiple sclerosis, created by scientists from the biotechnological company BIOCAD. The innovative development received the trade name Tenexia. INN: sampeginterferon beta-1a. This was announced on April 21, 2023 by BIOCAD. Read more here.
2022: In the drug against multiple sclerosis, the rights to which Sanofi bought for $3.7 billion, found serious side effects
In July 2022, the American medical regulator FDA ordered the pharmaceutical company Sanofi to stop testing the drug against multiple sclerosis. The cause was dangerous side effects. Seeing cases of drug-induced liver damage, authorities imposed a partial clinical ban on phase three trials of the drug, further reinforcing doubts about the appropriateness of Sanofi's takeover of Principia Biopharma. Read more here.
2021: Russian drug for MS therapy from Biocad reaches the final of clinical trials
On April 22, 2021, the biotechnological company Biocad announced that it had received permission from the Ministry of Health of the Russian Federation to conduct the third (final) phase of clinical trials of an original drug for the treatment of multiple sclerosis. In the course of phase I and II studies, it showed high effectiveness: the number of exacerbations decreased in patients and the manifestations of the disease decreased. In addition, according to the study scheme, the drug is administered every six months, which can increase patient adherence to such treatment. The results of phase III will allow the start of the registration procedure for the drug, its launch on the market is expected within five years. Read more here.
2018: The positive impact of meditation
Italian doctors have found that the quality of life of patients with multiple sclerosis improves meditative practices. According to the study, the results of which were published in the Multiple Sclerosis Journal in early April 2018, the practice of mindful attitude to life and exercise in meditation largely alleviate the symptoms of the disease and lead to an improvement in the quality of life of patients with multiple sclerosis. In patients who underwent a 3-month online course of special meditations, a decrease in stress and depressive conditions, improved sleep, as well as leveling the symptoms of chronic fatigue syndrome were noted. But to consolidate the positive effect, you need to take such meditative courses at least once every six months, the study says.
2016: The Positive Impact of Video Games
In March 2016, Italian scientists released the results of a study showing that video games have a favorable effect on patients with multiple sclerosis. The conclusion was drawn on the basis of studying the picture of the brain using functional magnetic resonance imaging (fMRI).
For eight weeks, a team of researchers from Sapienza University of Rome, led by Laura De Giglio, Ph.D., conducted a cognitive program for the rehabilitation of the thalamus (the part of the brain responsible for cognition and interaction with the world) in patients with multiple sclerosis. The experiment involved a game from Nintendo, which trains the brain using puzzles and memorizing words. The game is based on the work of Japanese neurologist Ryuta Kawashima.
24 patients with multiple sclerosis, 5 days a week, 30 minutes a day, they devoted time to a video game. At the end of the therapeutic course, patients underwent fMRI, which showed improvements in the thalamus and an increase in attentiveness and executive function compared to those patients who were not offered a video game. The authors of the study note that its results show an example of the plasticity of the brain to form new connections throughout life.
The results of our study contribute to understanding the mechanisms for restoring cognitive abilities of patients with multiple sclerosis and may be useful for future research in this area, said Laura De Giglio.[8] |
How multiple sclerosis patients live
According to 2020 data, up to 37% of patients 10 years after the onset of the disease can move only with outside help. After 15 years, the proportion of such people rises to 50%.
10 years after the development of MS, 50% of patients experience difficulties in fulfilling professional duties, and more than 80% cannot remain in their previous work.
In April 2020, the Levada Center, together with the company Roche"," presented the results of a study of the quality of life of patients with multiple sclerosis (MS), which was conducted in October 2019 in the format of an online survey of members of the MS patient communities on social networks Vkontakte"" and. Facebook It was attended by 540 people, including users diagnosed with multiple sclerosis (90%) and their relatives (10%). The majority of respondents (88%) live outside, Moscow 62% - residents of medium and small towns.
According to the results of the survey, the quality and standard of living as a whole suits 52% of respondents. Male patients rate their standard of living as unsatisfactory more frequently than female patients (46% and 34%, respectively). People with relapsing MS are more satisfied with their lives (61%) than people with a progressive diagnosis (38%). More than half of respondents (56%) report an unsatisfactory amount of available information about the disease, among them more patients with progressive MS (62%) than among patients with relapsing MS (53%).
The study showed that the diagnosis of primary progressive multiple sclerosis (PPMS), the fastest disabling type of disease, is at a low level. Every fourth respondent learned a reliable diagnosis several years after seeing a doctor. At the same time, PPMS leads to deep disability on average 10 years after the onset of the disease.
Estimates of the effectiveness of the therapy among patients with different types of MS differ. People with relapsing multiple sclerosis are more likely to evaluate the therapy as effective (41%), while more than half of patients with progressive MS are more likely to be dissatisfied with this aspect of care: 54% of people with PPMS and 51% of people with secondary progressive MS (SPMS) consider the therapy to be ineffective. More than half of all respondents reported problems with the availability of effective therapy for advanced types of MS (56%) and the need to improve the level of medical care in general (53%).
Young patients (under the age of 25) more often noted the need for professional training and assistance in applying for work (58%), and also spoke about the need for consultations with specialists in legal and medical issues (38%). Respondents aged 25-34 more often emphasize the lack of various kinds of cash payments (49%), the need to improve medical care (55%) and generally rated their quality of life as unsatisfactory (41%). Of all age groups, the need for a barrier-free environment and household assistance at home is more often noted by patients over 45 years old (26% and 11%, respectively).
25% of patients with multiple sclerosis faced refusals to provide therapy in public medical institutions. This problem was more often observed in the regions (26%) than in Moscow (16%). More than a third of respondents (36%) faced a delay in receiving drugs, and 47% of them note that drugs had to wait more than one month. The reason for the delay in most cases was the lack of necessary medicines in the region of residence (59%), as well as the inability to receive an appointment from a doctor on time (25%).
According to the results obtained, 37% receive all the necessary drugs according to the profile of their disease free of charge. 29% of respondents receive only half of the necessary drugs free of charge. 13% of patients purchase all the necessary medicines at their own expense. 83% of respondents from among the relatives of patients rated the level of medical care received by the patient as unsatisfactory, while among patients 63% of respondents gave the same assessment. Similarly, opinions were divided in the evaluation of drug supply: 80% of relatives and 54% of patients expressed dissatisfaction with this aspect.
See also
Notes
- ↑ Murashko said that in 2023, multiple sclerosis was diagnosed in 7 thousand Russians
- ↑ In the Russian Federation, in three years, the number of patients with multiple sclerosis increased by almost 5 thousand
- ↑ of Multiple Sclerosis Patients. Methodological recommendations under the editorship of N.N. Spirin, A. Boyko. "2015
- ↑ multiple sclerosis
- ↑ . Methodological recommendations under the editorship of N.N. Spirin, A. Boyko. "2015
- ↑ The number of patients with multiple sclerosis is growing in Russia
- ↑ "Management of patients with multiple sclerosis. Methodological recommendations under the editorship of N.N. Spirin, A. Boyko. "2015
- ↑ fMRI uncovers benefits of video games for MS patients