This disease affects fully able people. Man suddenly loses the use of his legs or goes blind. MS is the most common cause of disability in young people.
MS is an incurable, chronic disease that leads to permanent disability. The first symptoms usually appear between the ages of 20 and 40. Thanks to treatment and rehabilitation, its progress can be slowed down. Unfortunately, due to the lack of adequate access to drugs and treatment, the quality of life of people with MS in Poland is one of the worst in Europe. We are third from the bottom in the Access to Medicines and Treatment category.
What is MS?
The disease causes the body’s own immune system to destroy the sheaths of nerve cells like acid, the insulation of electrical wires. Without insulation, the nerves are exposed to short circuits, slowing down or blocking the conduction. At the site of damage to nerve fibers in the brain, scars or sclerosis are formed – hence the name of the disease. In Poland, he has been suffering from MS for 30 thousand. up to 40 thousand people. MS often begins suddenly. The sick person may have problems with his eyesight – his or her vision is blurred or double. Sometimes he loses his sight in one or both eyes, sometimes the field of vision is restricted. Another symptom is weakness and paresis of the limbs, incoordination, numbness, and sensory disturbances. Sometimes there is also dizziness, imbalance, slurred speech, and an unpleasant feeling of running an electric current along the spine.
MS changes lives
Izabela Czarnecka, president of the Polish Committee of Sclerosis, fell ill with MS when she was 29 years old. The disease first hit her eye. She started seeing badly. She was hospitalized in the ophthalmology ward. It was then that people started to suspect MS. When she was admitted from the hospital, she developed hearing problems, imbalances, and trembling hands. – I was a journalist. Due to my illness, I missed the letters on the computer keyboard. Before that, I used to go abroad to do press materials, and when I got sick, I couldn’t get home from the store – he says. Today Izabela Czarnecka is in a wheelchair.
Access to treatment
In Poland, about 12% of 40 are treated. Multiple sclerosis patients, while in other European countries, 30-40% of patients have access to treatment, i.e. all who are helped by the therapy. MS is an incurable disease, but treatments can slow it down or alleviate some of the symptoms available. In Poland, the problem is that the patient must meet a number of criteria to be included in the drug program, in which he receives fully reimbursed drugs. Unfortunately, not everyone has a chance. Of course, it is always possible to buy drugs on your own, but the vast majority of patients and their families cannot afford monthly expenses of over 2. up to 7 thousand zloty. In addition, a large proportion of the sick either do not have a job – because they have lost it due to MS – or their health condition does not allow them to take it. The pension, on the other hand, is not even enough to secure the funds needed for everyday functioning.
Five-year program of the National Health Fund
Treatment of MS under the National Health Fund program lasts only 5 years. The fund explains this by the lack of financial resources. Meanwhile, according to specialists, it should be continued – as in the case of other chronic diseases – as long as it is effective. – In the USA, therapy is continued for up to 20 years, because after discontinuation of the drug, relapses often occur – says prof. Jerzy Kotowicz from the Presidium of the Polish Multiple Sclerosis Society.
Izabela Czarnecka talks about a patient who started to heal when he was in very good condition. He was the champion of Poland in karate. When the National Health Fund stopped financing his treatment, the disease developed rapidly. Today he is in a wheelchair. Meanwhile, some people with MS, thanks to properly selected treatment, can function normally, work and implement their plans. – Can the fitness of the body, the ability to independently dress, eat, walk a few meters be converted into money? Such a question raises a rebellion in itself – says Izabela Czarnecka.
Tekst: Halina of Pilon