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Michał is 10 years old. Although he is walking and jogging today, his father does not know whether he should buy him a wheelchair instead of a ball for his eleventh birthday.
– A protest is a last resort, and going out to the street and saying quite a dramatic reaction to the systematic ignoring and not noticing the sick by officials who are responsible for our health and life – says Piotr Piotrowski, father of Michał who suffers from juvenile idiopathic arthritis (JIA). Piotrowski and several thousand people decided to express their dissatisfaction to the Ministry of Health.
Diagnostics of rheumatic diseases
Immediately after his third birthday, in January 2005, Michałek’s knee swelled. Parents were convinced that the child fell or hit. The family doctor referred the boy to an orthopedist at the Polish Mother’s Health Center in Łódź. – I did not think then that my son begins a disease that will change our life. I did not know that he should see a rheumatologist, not an orthopedist. Because in order to win against his disease, it is necessary to start treating it as soon as possible – recalls Piotr Piotrowski.
Unfortunately, too late diagnosis of rheumatic disease is common in Poland. Juvenile idiopathic arthritis is rare. The average pediatrician can meet him statistically 1 times in his career. It affects 2 out of 7 babies. For Michał’s, the disease wreaked havoc for the first few months. Apart from the knee joint, the child developed a fever and lost his appetite. – There is a shadow left of the boy running and smiling – parents recall. The knee joint became as big as a grapefruit and soft as a tomato, and the whole leg was stiff. Eventually, the boy went to a pediatric rheumatologist.
Juvenile idiopathic arthritis
In the rheumatology ward, Michałek’s parents found out that their case is not an isolated one. – We saw children who were just over a year old. The little ones had internal organs, blood vessels and eyes attacked – recalls Michałek’s father.
– However, it is difficult to accept that your own child suffers from an illness that will not end in a month, two or a year – he adds. In 2007, when Michałek was 5 years old, he practically stopped walking. After 2 years – despite the use of available drugs and rehabilitation – the disease continued to develop. ESR and CRP results reached three-digit values, and changes in joints became irreversible.
Then a light appeared in the tunnel. Parents in the hospital ward met a teenager who told them that in her childhood, just like Michałek, she had stopped walking, she could not get dressed, write or eat on her own. Today that is a thing of the past because there are drugs that inhibit the development of the disease.
JIA is a lifelong disease, but its effects can be minimized. Properly treated gives you a chance for a normal life. – It is even hard to imagine the strength and hope that appears in a person when he sees that his child has a chance for a normal life – says Piotr Piotrowski.
Treatment of JIA with biological drugs
In the end, the doctors offered Michałek’s parents a therapy with biological drugs. – Why only then? Here we come to the absurdity, which means that in Poland a child with early JIA, when changes in the skeletal and joint systems are not yet irreversible, must become crippled through bureaucratic barriers to start expensive therapy – says the father. In Poland, the regulations qualify patients whose health condition is very poor for biological treatment. – To start modern therapy, a child or adult must reach the bottom, get down on their knees before the disease and watch the test results reach a critical level. Only then does he have the opportunity to apply for new drugs, and there is no guarantee that he will receive them – adds Piotrowski.
Control of biological drug therapy
During biological therapy, your baby must come to the hospital once a week. During this time, he is administered a drug subcutaneously. Check-ups are performed once a month and the attending physician is obliged to send them to the National Health Fund. The effectiveness of the treatment is checked every 6 months. A special computer application is used for this. – In Poland, the method and duration of treatment is not decided by the attending physician, but by the computer program – Michałek’s father is outraged. Research results must systematically improve in order for the therapy to continue. If it is not, then it is put on hold. – Even a slight deterioration leads to dropping out of the program. And it’s not about the average over several months, but about a specific test one month apart. What if the child falls ill like my Michał in the meantime, e.g. with the flu or smallpox? After all, the results will definitely be worse then. The application is not a doctor and says straightforward: you fall out! – Piotrowski is outraged.
Meanwhile, stopping the therapy leads to profound and irreversible changes, and often even threatens the child’s life.
Financing the treatment of chronic diseases
Michałek’s parents fear that their son may be deprived of treatment, as the rules of its financing will change from July 2012. Pursuant to the new regulations, the National Health Fund cannot allocate more than in 2010 to treating patients in drug programs. Meanwhile, then, as in 2011, the costs of treating patients in rheumatological therapeutic programs were significantly reduced by the so-called drug donations from pharmaceutical companies, which meant that more patients could be included in the therapy. The cost of continuing treatment for the same number of patients in 2012 and in the following years will therefore be higher.
– The arrogance and the lack of dialogue between the health ministry and the most interested, not just pharmaceutical companies, means that none of the doctors conducting therapeutic programs knows what will happen from July – Michałek’s parents complain.
Today the boy is walking, running, his research results are good. The therapy is working. – Each day without morning paralyzing pain in the joints is another victory day. What will happen in July? I do not know. Maybe for my eleventh birthday I will buy him a wheelchair instead of a ball – says Piotr Piotrowski. That is why he decided to protest. – Individually, we are powerless in the face of the irresponsibility and incompetence of officials managing the health care system. Meanwhile, it is them, not doctors, who increasingly decide about our treatment. That is why I have invited parents of chronically ill children, patients, doctors and representatives of associations acting on behalf of patients to protest in front of the Ministry of Health, he appeals.