There is such a drug, but not for everyone. A year of treatment with the drug used in the treatment of primary progressive multiple sclerosis (MS) costs 200,000. Wiktor Czeszejko-Sochacki, a young Warsaw lawyer suffering from MS, is fighting for the drug to be included in the reimbursement list.
"Either he is drunk or …"
"… takes something stronger, or he is sick" - wondered Wiktor's parents, looking at their son's unsteady gait. It was 1999, the final exams was approaching, and Wiktor's legs were so weak that he was losing his balance more and more often. however, there were neither drugs nor alcohol .. The MRI image showed in Wiktor's brain (precisely in the cerebellum) - 5 foci of inflammation characteristic of multiple sclerosis (MS), located in places responsible for proper coordination of the legs and muscle condition.
- I heard that I have primary progressive MS and took it indifferently - says Wiktor. - I knew so much that it was some kind of neurological disease, but I had no interest in it then. I thought then: what for? After all, I could do everything I have done so far. It was worse with running only. But I have never liked running, so - a bit of a pity. Besides, I was looking at my mother, who also has MS, and I thought: she has 100 million inflammatory foci in her brain and walks normally, I guess I'm somehow "less sick"?
When the body destroys itself
Multiple sclerosis (MS, from Latin sclerosis multiplex) is a chronic, autoimmune neurological disease in which the cells of the immune system attack their own structures of the nervous system and destroy the myelin sheaths of the nerves. As a result, the structure and function of the nerves themselves are damaged. As inflammation occurs in different places, MS has different clinical symptoms at different times.
Most patients have so-called Relapsing-remitting MS, which is characterized by periods of exacerbation (varying in severity, ranging from mild to unable to walk) and remission, when the disease has partially or completely disappeared. After each exacerbation, the patient becomes more and more disabled. After a few years, the relapses decrease, but the patient is no longer able to do soto function independently. This second stage of the disease is known as: secondary progressive disease.
The third type of MS is the one Wiktor suffers from: primary progressive. The term means that patients do not have relapses but develop neurological symptoms immediately which worsen over time and lead to disability. According to specialists, it is the most severe form of MS, because it is very difficult to treat.
From cane to pram
During the first years of studies at the Faculty of Law and Administration of the University of Warsaw, Wiktor made his way staggeringly, but still on his feet. - Doctors told me that I had to heal myself so that no more foci of inflammation would arise. So I started taking interferons and steroids - says Wiktor.
In 2003, Wiktor also went to Switzerland to take 1 dose of mitoxantrone there, which prevented the development of MS in the initial stages of the disease. Why 1 dose? - Because this drug is taken only once in a lifetime. Re-admission could lead to death - explains Wiktor.
"Swiss treatment" brought such good results that Wiktor almost forgot for 5 years that he had MS. However, when the disease returned after a period of "sleep", it began to annex Wiktor's body at an increasingly faster pace. There were no new foci of inflammation, but the old ones started to make more and more "havoc". New drugs and treatments, including implantation of stem cells three times, did not work. Wiktor could no longer move on his own. The auxiliary equipment that supported him changed quickly into more and more stable.
- First I used a walking stick, then a walker - a walker, and when I got shingles and every movement caused pain, I had no choice but to switch to a wheelchair - says Wiktor and … interrupts the memories for a moment … - Can you wait a moment? - he asks - We will talk further in a moment, I just have to move from the wheelchair to the bed. I get tired quickly … - warns Wiktor.
When you switch to a wheelchair …
Wiktor is 38 years old. He switched to a wheelchair 6 years ago, but not overnight. He was not traumatized by the suddenness of this change, because it happened gradually. Currently, Wiktor uses a semi-active wheelchair. - My hands are too weak for a fully active wheelchair. I wouldn't be able to walk on it alone. The one I have is tailored exactly to my abilities. For example, it has a higher backrest. This is important because I cannot keep my balance. If it wasn't for the higher backrest, I would have fallen off the wheelchair quickly - explains Wiktor.
To keep your muscles at their bestfor his SM condition, Wiktor exercises every day. From Monday to Friday with a physiotherapist, and on weekends alone. Exercise also helps him reduce the number of spastic spastic muscle contractions. Just like … - Okay, I'll confess: I smoke cigarettes. Nicotine relaxes the muscles. Only you know, for someone who is in a wheelchair, "going for a pipe" is a whole logistic operation, just like many other, usually simple, everyday activities - Wiktor laughs.
Wiktor has a prehensile reflex in his hands (in the morning, "when starting" a little weaker), so he can handle the food on his own, although - as he jokes - tea poured to the brim into a heavy mug would surely be poured. For washing, he needs help: a physiotherapist or his girlfriend, who often just cleans with him. Wiktor has no problems with neurogenic bladder, so he doesn't use a catheter. In the toilet, someone has to help him change to the toilet. At night, in order not to wake her partner up, she simply uses the "duck".
- Just like that for meetings with friends, suddenly I won't jump out anymore - says Wiktor. - Because first I have to find a place adapted to the needs of disabled people, and then someone who will take me there and bring me there, because I cannot drive a car alone. You have to put me in the car, fasten the seat belts, then drop me off - says Wiktor.
Even the usual "cinema trip" is a problem. - I do not want to sit in this special zone for "wheelchair users" right in front of the screen, because I cannot see exactly and my spine hurts from tearing my head. So I'm looking for a place a bit further, but to the side, so that I won't have problems leaving when I feel like going to the toilet, for example, says Wiktor.
Lawyer's problems with mobility
If Poland had a non-stop temperature of 25 degrees C, Wiktor would function best. This is because there are people with MS in this group whose organisms react violently to changes in weather, including temperature. Italy, Spain, the south of France - these are regions of Europe where MS is almost absent. It is favored by heat and sun, which causes the body to produce more vitamin D, beneficial for MS. Wiktor would visit these areas more often, and maybe even move permanently, but the obstacle is: logistics (again!), High travel costs, as well as the family and professional situation. Wiktor in Poland is kept by love, a beloved 5-year-old daughter who does not understand yet why "Dad has sick legs" and professional work.
Wiktor Czeszejko-Sochacki is a lawyer. SM did not prevent him from graduating from the University of Warsaw and obtaining French and European law degreesand international commercial law at the University of Paris II Panthéon - Assas, where he obtained his PhD in law. He specializes in civil, commercial, bankruptcy, copyright, media, Internet and foreigners law.
Wiktor runs his own law firm and cooperates with others, although with his illness, it is another logistical challenge. First, because lawyers handle most cases by meeting clients in person, often out of the office, at the client's premises or out of town. Wiktor is not mobile, so he is often unable to adapt to these requirements.
- Besides, I wouldn't be able to work for 7-8 hours in an office alone. I have to get out of the pram from time to time, lie down or just use the toilet. So I work mainly at home - explains Wiktor. Meticulous planning of the day also allows him to become involved in social activities. And one thing is especially important to Wiktor. It's about…
… a drug that could save 5,000 people from MS
Wiktor is lucky. He has already taken (through drips) 3 of 4 doses of ocrelizumab. This is called a monoclonal antibody that binds to a protein on the surface of B lymphocytes and prevents them from destroying the nerve myelin.
Ocrelizumab is used in the treatment of MS: primary progressive and relapsing remitting MS. However, not all patients can afford this drug. The annual treatment costs PLN 200,000.
Wiktor supports non-governmental organizations working for people suffering from multiple sclerosis, in the opinion of the Ministry of He alth that it should include ocrelizumab on the list of reimbursed drugs. They jointly sought the support of the Patients' Rights Ombudsman, sent appeals to the ministry signed by thousands of patients, and there were several parliamentary questions regarding drug reimbursement - so far to no avail. The minister is still hesitating and the announcement of the next reimbursement list is coming soon.
- Mr. Minister, the drug is expensive, but not horrendously. After all, the annual cost of living by the state budget is higher for 5,000 people who have become disabled due to SM, cannot work and must use social assistance benefits. Especially since MS affects mainly young people, aged 20 to 40, in the so-called manufacturing, professionally active and filling the state budget with their taxes. Mr. Minister, one of your signature can relieve state expenses and give several thousand people a chance for he alth and normal life - appeals Wiktor.
Magdalena Gajda A specialist in obesity disease and obesity discrimination of people with diseases. President of the Foundation for People with Obesity OD-WAGA,Social Ombudsman for the Rights of People with Obesity in Poland and a representative of Poland in the European Coalition for People Living with Obesity. By profession - a journalist specializing in he alth issues, as well as a PR, social communication, storytelling and CSR specialist. Privately - obesity since childhood, after bariatric surgery in 2010. Starting weight - 136 kg, current weight - 78 kg.