In the world now lives about 2 million people with multiple sclerosis. The first symptoms of the disease appear in people around the age of 30 years when they make families, build a career, lead a full and rich life.
Fortunately, advances in the pharmaceutical industry have made it possible to slow disease progression and delay disabilities. Until recently, however, drug therapy for those who suffer from the primary progressive type of MS disease course, did not exist.
About what treatment patients with this diagnosis may offer medicine now, and how patients live with multiple sclerosis in Russia, on the eve of the world day of struggle with multiple sclerosis, which this year falls on 30 may, the editorial Lead.Medicine talked to Yan Vladimirovich Vlasov, neurologist, Professor, President of Russian public organization of disabled patients with multiple sclerosis.
What is multiple sclerosis?
Multiple sclerosis is a demyelinating disease that occurs on a background of genetic changes that lead to problems in the immune system and manifested a large number of neurological manifestations. Combinations of these mutations can be very much, but because the symptoms of the disease may be very different.
There are more than 100 variants of the onset of the disease. Basically it will debut in age from 20-30 years, though there are cases when multiple sclerosis strikes children or people over 65. This, however, is quite rare, and the majority of the patients are healthy people of reproductive age. 75% of the patients are women with a certain phenotype: blond, blue-eyed Europeans.
Now the world is home to around 2 million people diagnosed with multiple sclerosis, and in Russia the average data – about 130-150 thousand patients.
How is the situation with the diagnosis of multiple sclerosis in Russia?
About 20 years ago a diagnosis of multiple sclerosis put one out of twenty patients. From first symptoms to diagnosis took place 15-20 years. About ten years ago when the standards for neurologists and schools for them from the onset of symptoms to diagnosis of the disease, was held about five years. Now this period was reduced to three months. This, however, is characteristic of large cities, smaller localities problems with the diagnosis remain.
Russian Committee of researchers of multiple sclerosis (ROCKIES) since 2000, is engaged in the education of neurologists. Are special schools for physicians are held educational events – this involves leading experts in the study of disease. Twice a year, held a major scientific conference in Russia, and thanks to the help of pharmaceutical companies specialists have the opportunity to attend professional conferences in other countries. We can say that in terms of diagnosis now local experts are at the global level.
With regard to specialists in primary care, there is also a positive trend. Multiple sclerosis study in medical universities and this theme is embedded in educational standards for doctors. The fact that the disease can start in different ways. Sometimes the patient comes to the neurologist and the therapist, the oculist, the therapist – therefore, we are working with these specialists.
What is the treatment now given to patients with multiple sclerosis?
Multiple sclerosis is a difficult disease that is now considered incurable. Modern medicine offers patients a palliative, which, however, is considered to be quite effective in some cases, the disease ceases to progress.
Some time ago a man who was diagnosed with multiple sclerosis, in five years became a profound disability, and in five years has died. Now the period of disability is extended to 15 years and the life expectancy of such a patient by European standards is no different from the life expectancy of patients without diagnosis. However, the quality of life in people with multiple sclerosis is significantly lower.
There are other types of the disease: secondary-progressive multiple sclerosis (35%) and primary-progressive (10%). Russians with primary-progressive type of coursein which exacerbations are absent, and the condition is gradually deteriorating, even before last year, the doctors could offer no cure. Was medicines for such patients in the country.
In 37% of cases the doctors, trying to somehow stabilize the condition of patients who were prescribed the PITRS (drugs that alter the course of multiple sclerosis), medicines for people with relapsing-remitting types of flow. About a fifth of cases, this treatment, fortunately, helped.
This is what we have learned in the course of processing the results of large-scale socio-economic study, which studied the condition and quality of life of patients with primary progressive multiple sclerosis in Russia. We received additional confirmation of facts that have been reported previously. Patients with multiple sclerosis have lower quality of life than other people, they used isvalidateroot, their families more problems than other, more social difficulties. Now received data is transferred to the Ministry of health and other agencies.
What else is known about patients with multiple sclerosis in Russia?
In the Russian register 92 thousand people, but it is assumed that people with this diagnosis is about 150 thousand. Unfortunately, in Russia there is no unified register of patients and understand how patients across the country is definitely impossible. In some regions there was a register – data about all ill with multiple sclerosis people, and in others – the registry, which records data only on those receiving treatment.
Medicine now get about 45 thousand Russians. It is important to understand that treatment is indicated, not all, but only to a certain category of patients. In some cases, when the disease is already progressing strongly, drug therapy is not prescribed at all since it is useless and ineffective. Until recently, this group included patients with primary progressive multiple sclerosis, but next year, we hope they will begin to get suitable therapy.
How to change the lives of these people?
In 2017 in Russia was registered the drug Acrivos (ocrelizumab) is the first drug designed specifically for patients with primary-progressive type of MS disease course.
After registration on the territory of Russia every doctor under Russian law has the right to appoint the drug, and the patient for 323 Federal law has the right to request a prescription drug from a regional body of health care management. Yet in practice such cases are few, although single treatment is already there.
We hope to be able to support the introduction of this drug in restrictive list of the Russian Federation, patients to be able to get it for free on the program “7 nosologies resource-intensive” and the doctors could quietly write his patients.
For all patients with primary-progressive type of MS disease there is hope – it is quite tangible. We, the public organization of patients with multiple sclerosis, support the introduction of this drug in the restrictive list, the list HVNLP and a list of the 7 nosologies and we hope that procurement of this medication will be held for those who he’s appointed. This can happen at the end of 2018, in the middle of the following will be possible to hold auctions for the purchase of drugs.
Are there in the pharmaceutical market drugs like this?
Now Akrivos – the first and only drug designed for patients with this type of MS disease course. It is expected that it should have a positive effect in about 70% of cases. These assumptions are made based on the results of clinical trials of medicines.
In the world there are development: other pharmaceutical companies are also involved in creating medications for patients with primary-progressive type of the disease. Now there are 2 and even stage 3 clinical trials of new drugs. Maybe in a couple of years on the pharmaceutical market will be similar to Ochreous.
What else should patients with multiple sclerosis in addition to medical support?
Multiple sclerosis is a disease caused by a combination of many genetic point damage. Different combinations can lead to very different manifestations, therefore, in patients with multiple sclerosis the disease can occur in different ways, causing a variety of symptoms.
Patients in addition to medication, pathogenetic therapy, essential and symptomatic, and assigned to it depending on the needs of patients. Almost 100% have cardiovascular complications – they need vascular therapy, someone serious spasticity – that prescribe drugs to overcome it, someone else should solve the problems with bladder or vision. Don’t forget about the massage, exercise therapy and physiotherapy.
In our current system of health care lacks a system of rehabilitation. Needed non-medical rehabilitation: assistance in learning self-help skills, assistance in the development and utilization of technical means of rehabilitation. It should teach therapists, kinesiologists, occupational therapists, psychologists and pass that should not in the hospital and at special institutions. Fortunately, the problem began to resolve and we hope that the situation will improve.