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Cystic fibrosis They are too young to receive a life-saving drug. The ministry is still negotiating refunds

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This genetic disease destroys the lungs – the last resort is often a transplant. There is a drug for cystic fibrosis – it is very expensive, and negotiations with the pharmaceutical company are very difficult. When a TVN24 reporter asked the Minister of Health about the progress, he was told that he should negotiate on his own.

Ten-year-old Julia dreams most of all about swimming. However, any effort is out of the question when you are fighting for every breath. Her whole life revolves around cystic fibrosis – a fatal, genetic disease.

There is a drug that could save and change the girl’s life, but it is unavailable to her because she is less than 12 years old. – There is a group of really excluded patients who cannot benefit from this drug – says Sylwia Ból, mother of Julia suffering from cystic fibrosis, Polish Society for the Fight against Cystic Fibrosis. – My daughter suffocated and died more than once in my arms. The father, even the priest, feels completely powerless. Then he will only whine to God – says Father Andrzej Opolski, parish priest of Saint Anne’s Orthodox Parish in Boratyniec Ruski, father of Zuzanna, who suffers from cystic fibrosis.

Father Opolski is now calm about his daughter. She has been receiving reimbursed medicine since March. Patients over 12 years of age are provided with a medicine called Kaftrio. A very effective drug that stops the disease. Teenager Zuzia is not going to the hospital, but on a date. – Like a healthy person. I can ride a bike and go for long walks – says Zuzia. – There are children who suffocate without oxygen and they need immediate administration of Kaftrio and Kalydeco, for which the responsibility is not the clinic, not the doctor, but unfortunately the government – emphasizes priest Andrzej Opolski.

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The entire conversation with Father Andrzej OpolskiFakty TVN

The government is negotiating with the manufacturer the price of the drug for younger children – from the age of six. The pharmaceutical company states that it wants the drug to be available to everyone and intends to cooperate with the government. – I know that you can say that we should allocate more money, but please say that Poles pay too little for the health care system – said Maciej Miłkowski, deputy minister of health, on Tuesday.

A whole conversation about cystic fibrosis with transplantologist Maciej Urlik

A whole conversation about cystic fibrosis with transplantologist Maciej UrlikTVN24

Difficult negotiations with the drug manufacturer

Mrs. Sandra does not understand this translation. Her friends either borrow money to get medicine abroad or go to a place where there is reimbursement. – I don’t know how I would tell my 11-year-old son: listen, we’re leaving tomorrow and we have to leave everything behind. He wouldn’t forgive me, says Sandra Majewska, mother of Hugo, who suffers from cystic fibrosis.

The negotiations last over a year, and every day with cystic fibrosis carries a risk. When asked by a TVN24 reporter about the negotiations, Deputy Minister Miłkowski said: – If you want to pay a pharmaceutical company on behalf of Poles, please negotiate.

Most EU countries reimburse the drug from the age of 6. It’s a big expense, but it pays off because the costs of hospital treatment, lung transplants, pension payments and parents’ resignation from work cost more. – The average life expectancy of a patient (with cystic fibrosis – editor’s note) in Poland was 24 years. None of the patients took their education seriously. Because he knew that when he finished his studies, he was doomed either to a transplant, to disability, or even to death – emphasizes Dr. Maciej Urlik, coordinator of the Transplantation Department with the Cystic Fibrosis Subunit of the Silesian Center for Heart Diseases in Zabrze.

– In the future, these patients will study, start families and work. The frequency of hospitalizations will decrease and, as a result, it will be cheaper – adds Łukasz Woźniacki, Cystic Fibrosis Treatment Center in Dziekanów Leśny, Clinic and Department of Cystic Fibrosis, Institute of Mother and Child.

The entire conversation with Deputy Minister of Health Maciej Miłkowski

The entire conversation with Deputy Minister of Health Maciej Miłkowski

Main photo source: TVN24

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