Parents request President to help children ill with cystic fibrosis

The action participants brought broken gas masks to the Presidential Administration to show what the patients experience.

As the Human Rights Information Centre correspondent reports, about 30 parents and their children came to the Presidential Administration to draw attention to the problem of providing medicines to the people ill with cystic fibrosis, a genetic disease affecting the lungs.

The action was held today, on the day when the budget committee will approve the draft state budget for 2016.

The parents of children ill with cystic fibrosis are in despair as the draft budget stipulates significantly less funds than required to provide children with medicines. The real need amounts to about UAH 8 billion while the draft, proposed by the Cabinet, provides for only about UAH 3.5 billion.

This also refers to other patients. For example, those ill with hepatitis will be provided with medicines only by 9% next year, and people living with HIV – by 24%.

The action participants, who have come from all over Ukraine, demanded increasing the funds in the budget to the required level and elaborating the state drug procurement program, particularly of the Dornase Alfa medicine, which is the main medicine for the patients with cystic fibrosis. They activists brought a box with broken gas masks to the Presidential Administration building to convey it to the authorities. So they tried to demonstrate what children and adults with cystic fibrosis feel. A girl Anastasia, ill with this disease, recited a poem to the President of Ukraine asking for help.

The representative of the Presidential Administration came to the activists. He did not take the gas masks, took the appeal and said that it should be considered within 30 days.

As Larysa Voloshyna, the mother of Anastasia, said, cystic fibrosis is a genetic disease, the most common one in the European countries. A child is in a constant need for vitamins, high-calorie food, enzyme medications, inhalations with drugs that help to thin out the viscous mucus in the lungs. After this, a child feels good during the day. The medicines are given in clinics, but if a child is taken to the hospital, the parents have to buy all the drugs as the hospitals do not have sufficient funding. In Ukraine, children with such a disease live an average of 15 years due to the inadequate treatment.

“The children in Europe live 50-60 years, they can become adults, go to kindergarten, to school, get an education, later be employed and create healthy families,” Larysa said.

This disease also cannot be completely cured in Europe, but there is a maintenance therapy, treatment protocols, and national programs to improve the quality and length of life. Ukraine has neither the national protocols of European standard nor a sufficient number of specialists. There are, in fact, no places to treat the adult patients with cystic fibrosis, and they are even offered to undergo treatment in the tuberculosis departments.

The treatment is quite expensive for a family of average income as it costs about UAH 20,000-30,000 per month. In case of exacerbation, this amount can be doubled or even tripled. Not everyone can afford the treatment, and children become actually bound to an oxygen cylinder.

Olha Stefanyshyna, the executive director of the Charitable Foundation “Patients of Ukraine”, said, “I do not know what to say when the European experts with wide-open eyes ask me why our government has so irresponsible attitude to the patients and to the problem of overcoming the AIDS, tuberculosis and hepatitis, and of reducing mortality from cancer diseases.”

She described such underfunding as the sentence for more than half of seriously ill patients.