Cystic fibrosis charity writes to the Prosecutor-General
The Oxygen Programme helps children suffering from cystic fibrosis, functioning under the jurisdiction of the charity Warm Hearts. Maya Sonina, head of the programme, said that for years, relatives of people suffering from cystic fibrosis have been unable to obtain better availability of treatment. The research institute for lung disease, which treats people over 18 years of age suffering from this complaint, has 222 patients registered, all of whom are supposed to have regular courses of treatment at the clinic. There are no other centres of specialists for it in the country. For all these patients there are only four beds in the whole country. The doctors are unable to accept all those in need of hospital treatment at the times they need it. Ms Sonina said that over the past 5 years 40 patients between the ages of 18 and 25 years under the care of the institute have died, in most cases because they were not able to be hospitalised when they needed it. Had they received the care they needed, they might not have died.
Representatives of Oxygen are asking the Prosecutor General to oblige the government to provide the funds needed for expansion of the provision of beds in separate cubicles to ten. The request will be presented on 24 May. That day volunteers and relatives of patients plan to picket the building of the Ministry of Health and Social Welfare.
Maya Sonin (Oxygen) Tel: 8-916-644-86-69, e-mail:firstname.lastname@example.org, Website: http://www.teploserdec.ru/kislorod/