Artyom is an accordion player, conductor and music teacher, who lives and works in St Petersburg, Russia. His medication is not covered by the public health system, and Artyom can’t afford the medicine on his own, but he tries to maintain a good quality of life through exercise and mindfulness. Artyom is the chairperson of the Leningrad Regional Russian Multiple Sclerosis Society.
MS has changed my life. I have problems with mobility, I can’t find work, I can no longer get the medicine I need. To treat my symptoms, I do swimming, physical training, mind and mental control, and cognition. That’s it.
It took more than six months to get my diagnosis. I had numbness all the way up my body to my chest, and at first the doctor thought I had a compressed spinal fracture. The doctor said it was the result of my accordion playing – the wrong sitting position, holding a heavy instrument for long periods of time… MS was last in the list of possible causes of my symptoms.
Finally I was diagnosed with relapsing-remitting MS in 2001 at the St Petersburg State Medical University.
MS causes my legs and body to be numb, and my left leg and arm are particularly weak. My left leg sometimes can’t feel water, even hot or cold; I get spasms and it is permanently fatigued.
Not so many people know about MS, until you tell them. People should know about this disease so they can help people with MS.
The most important consequence is lack of mobility, and then inability to find work, and now I can’t get the medicine I used to.
The Russian Ministry of Health wants to support domestic medicine manufacturing, so it has replaced Betaferone with a substitute, called Ronbetal. Ronbetal was registered without being approved by the State Scientific Research Institute of Standardization and Control of Medical Biological Medicine (the national authority that controls medical immunobiological drugs). Ronbetal is much cheaper, but there are a huge amount of side effects. People first refused this medicine, but now it is the only way to get ‘interferon beta 1b’ in Russia for free.
Corruption in Russia is a big issue these days, and it is an issue in the health system too. I suspect that the paperwork is manipulated so administrators can steal money from health care. Money – and the corporate interests of Russian pharmaceuticals – are the priority, not people.
The public health system provides only the minimum and low quality health care, in defiance of the Russian constitution where it says that medical care is free. Because I refuse Ronbetal, I am not taking any medical treatment. Swimming, physical training, mind and mental control, cognition: that’s it.
I am now married and have a four-month-old son, Ivan. Not so bad… 🙂 Life goes forward…
I still have no paid work, social activities don’t bring money at all. I receive $250 as a pensioner (handicapped status).
I’m counting on first of all myself, my wife, friends and family.
As an active person living with MS, I was asked to be the chairman of the Leningrad Regional Russian Multiple Sclerosis Society. The Society is advocating for free treatment for people with MS as a matter of Federal Law.
For others living with MS, I would like to say “never give up!”