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– When I want to leave the house, I have to develop a map of city toilets on my route, because I have 30 diarrhea every day – says Marta Kuśnierz from Katowice, whose National Health Fund refuses to finance the continuation of Crohn’s disease treatment.
Marta is 27 years old. He has been suffering from Crohn’s disease for 5 years. He does not leave the house because he spends all days in the toilet. Meanwhile, the National Health Fund is refusing her treatment that could change her life.
Symptoms of Crohn’s disease
Crohn’s disease is a chronic disease. It is characterized by inflammation that occurs most often in the terminal ileum. The inflammatory process affects not only the intestinal mucosa, but the entire thickness of its wall. The causes of Crohn’s disease are not established. The symptoms depend on the location, extent and advancement of the changes in the gastrointestinal tract. The most characteristic are: diarrhea, abdominal pain, increased temperature, weight loss, perianal changes. Modern medicine cannot cure this disease. Removal of a fragment of the diseased intestine does not guarantee that the inflammation will not appear in another part of the gastrointestinal tract. However, we do have ways to control the inflammation and prevent it from coming back.
Persistent diarrhea
Marta suffered from constipation at first. Then there was bloody diarrhea. Due to her illness, she lost weight and weighed 40 kg. – I used to buy pants in children’s clothing stores, because only such pants were good for me – he says. Due to her ailments, she had to quit her studies. During the first three years of her illness, she was hospitalized 25 times. The disease gave up a little while she was pregnant. After the baby was born, everything came back. “It’s hard to take care of a baby with 30 diarrhea a day,” she says. The disease excluded her from normal life and depressed her. – I spend my whole days in the toilet or lying on the bed, doubled over in pain. I don’t meet my friends, I don’t even go shopping – she says.
Crohn’s disease is treated primarily with steroids. Intravenous steroids are the main medications for more severe conditions, and immunosuppressants are used to prevent relapse. When this treatment does not work, biological drugs are used. For Martha, the steroids did not work. The number of diarrhea decreased slightly, and the abdominal pain was not continuous, but intermittently. After stopping the steroids, everything returned to the previous state.
Treatment with biological drugs
In accordance with the regulations in force, the qualification of a patient for treatment with biological drugs is based on seven criteria. These include extreme emaciation, the appearance of fistulas, i.e. the passage of the disease process beyond one organ and the involvement of the neighboring one, vasculitis, joint involvement, deposition of insoluble protein in tissues and organs, high CRP and ESR. The problem is the interpretation of these provisions. According to officials, all seven criteria must be met because they see “and” where doctors “or”. – A doctor, wanting to follow the nonsense law, should, before applying biological therapy, send the patient to a fast, so that his body mass index (BMI) drops below 18! In addition, the therapy preceding the treatment with biological preparations is steroid therapy, after which the patients gain weight in an unnatural way, and not lose weight. In addition, to meet all the criteria, you have to neglect the patient and bring him to a state where he is practically standing over the grave – says Piotr Albrecht from the Medical University of Warsaw, medical consultant of the J-elite Society. In his opinion, biological treatment should prevent complications of the disease leading to debilitation. It is then more effective, but also cheaper. The patient does not have to be constantly hospitalized, he does not need to undergo surgery to remove a fragment of the intestine. He is also more agile, can lead an almost normal life and continue his professional work.
Irrational treatment
Marta qualified for the biological drug treatment program. The improvement happened quickly. – I went back to college, I work part-time, and my child finally feels that he has a mother. I can go to the playground with him, I can smile at him – he says. The problem, however, is that the National Health Fund only finances the therapy for a year. If the patient meets all the criteria again after one year, they can apply for funding. – So when, after so many years of suffering, a light appeared in the tunnel, I already have to worry about what will happen after stopping the drug – says Marta.
Doctors say this is irrational, because everything achieved during a year’s treatment must be wasted for the patient to meet the treatment criteria again. The sick say that it is like pulling them out of a well, and as soon as they feel the joy of being saved, they fall into the middle of the lake, where they have to drown again for a year. – So what are patients who have a recurrence, e.g. after 8 months, to do – wait and suffer? – the sick ask. The change of regulations was postulated by the “J-elita” Society, as well as by the national consultant in the field of gastroenterology – prof. Grażyna Rydzewska. – We are aware that this treatment is not cheap and does not have to, or should not, be used in all patients. However, the current criteria are almost absurd. I would not like the sick to be forced to public forms of protest, which in this situation should be a hunger strike under the slogan – “a condition for receiving treatment – anorexia by choice” – says Dr. elite”.
Eligibility criteria for biological treatment
About 1000 people in Poland are eligible for biological treatment, for whom this is the only chance for a normal life. Admitting a patient to a therapeutic program and administering biological drugs to him or her means rapid improvement in approximately 80% of patients, and complete resolution of symptoms in almost half. – How to live by passing 20 stools a day? You can’t even take your child to kindergarten, let alone work, travel, live a normal life without shame and fear, ”says Marta Grodzka from Lublin, who also fights to continue the therapy. Biological treatment is commonly used in other European Union countries, but only in Poland are the eligibility criteria for treatment so strict. Patients associated in the J-elite association send postcards to the minister of health. There are greetings from the toilet. They also intend to cover the health department with toilet paper.
Text: Halina Pilonis