A donation campaign for 50 inhalers for patients with the rare cystic fibrosis disease is being launched

We are starting a donation campaign for 50 inhalers for patients with the rare disease cystic fibrosis. This is what Anton Alexiev, chairman of the “Mucoviscidosis” association, said in an interview with BTA. There are 253 patients in Bulgaria affected by this most common rare disease, and more than half of them – 63% – are children, Alexiev also said, citing data from Alexandrovska Hospital – the medical facility where these patients are diagnosed. treat and follow up. Donation methods are listed on the organization’s website. The association insists on conducting neonatal screening of newborn children in order to start timely treatment. Another goal of the patient organization is to provide food for special medical purposes for cystic fibrosis patients.
Donation campaign – 25 thousand BGN is needed
50 inhalers are needed, which are mainly intended for children, Alexiev pointed out. In his words, the association has been organizing such donation drives for several years, as the inhalers are specific, almost professional, and provide the necessary strong atomization of the medication, he explained. According to him, some of the patients need 10 inhalations a day. The health fund does not provide such inhalers, Alexiev also said. The amount to be collected is BGN 25,000. The inhalers are expensive because they are more specific, as they are used by some patients for 10 inhalations a day. According to him, such an inhaler has a one-year warranty. We set a period of about three years in which the patient can use a given inhaler, because not everyone does 10 inhalations a day, he explained. According to the latest data, there are 253 Bulgarians suffering from cystic fibrosis, of which 63% are children, Alexiev pointed out, citing information from Alexandrovska Hospital, where patients are diagnosed and treated.
Special food and inhalers
Cystic fibrosis patients, especially children, need special food, Alexiev also said. According to him, children do not digest normal food well and for this reason they are much weaker than their peers. The foods that are needed are high in calories and high in protein, he added. The NHIF still does not reimburse food for medical purposes, which is needed by cystic fibrosis patients. At the moment, this issue is being discussed with the NHIF and we hope to overcome it, Alexiev added.
The NHIF pays for the drugs, which are at the European level, added Alexiev and specified that the patients use very expensive modulators, reaching a price of about BGN 25 thousand. per month. The fund also pays for the antibiotics they need. The association is also discussing the possibility that the expensive inhalers, for which we are now doing the donation campaign, will be included in the list of medical devices for which the Fund pays, Alexiev added.
The disease and its treatment
Cystic fibrosis is a disease of the whole body, and the treatment does not only cover the lungs, Alekisev said. Many of the patients also have more serious gastrointestinal problems and damage to the liver and pancreas. The different manifestations of the disease depend on the different nearly two thousand mutations, he added. When a bacterium has “settled” in the patient’s lungs, the prevention of frequent infections is through inhalations with a given medication. The goal is to suppress the levels of spread of bacteria in the lungs so that the condition does not become chronic, Alexiev added. These are bacteria that are not dangerous to other people, but in cystic fibrosis patients, they can be very difficult to clear. Cystic fibrosis patients are much more susceptible to viral and bacterial infections. The child is born with genetic changes – when two recessive genes from the parents meet, usually then a child is born with a damaged gene and the manifestation of cystic fibrosis follows. We are fighting to organize neonatal screening of newborn children, Alexiev added. I was diagnosed when I was 18 years old, but if I had been diagnosed much earlier, I probably would have had a much different lifestyle and my lungs would have been much more preserved, he added.