This was the news announced at the press conference, held today at St. Marina University Hospital – Varna, which once again raised the pending problem concerning the lack of support from government institutions for young patients on insulin pump therapy. Prof. Violeta Yotova from the Department of Pediatrics and Medical Genetics at MU-Varna and head of the Multiprofile Specialized Pediatric Clinic, and Nelly Valeva, head of Directorate "Social Activities" of Varna Municipality informed the media representatives on the main issues of children with diabetes and their families, outlining the possible solutions for dealing with them. The meeting was attended by the parents of the 2-year-old Victoria, the youngest patient in our country, who is on insulin pump therapy, carried out by the team of Prof. Yotova last year, as well as the families of Boryana (1- year-old) and Metodi (7 – year-old).
According to the specialists, if a correct approach and strategy is applied, the quality of life of children with diabetes will not differ from that of their healthy peers. Under modern circumstances, it is possible for children with diabetes to grow up and become healthy, active people, with no disabilities or any kind of complications of the disease. This is achieved through constant monitoring of blood glucose level, so that it is as close as possible to the physiological one. This requires adaptation of insulin needs in accordance with food, physical exercise and basal blood glucose level, which is achieved through applying the most modern means of therapy.
Evidence of all this can be found in the results, achieved by Prof. Violeta Yotova and her team from the Department of Pediatric Endocrinology at Multiprofile Specialized Pediatric Clinic of St. Marina University Hospital in Varna, who placed an insulin pump on the youngest patient in our country, the 10-month-old Victoriya, a year ago. Today she has grown up, walks and tries to talk and her glycated hemoglobin is 6.3%!
Since then the number of patients with insulin pumps, placed at Varna clinic has increased from 7 to 27, and the average age is 6.5 years. By supplying small and precise doses of insulin round the clock, according to the needs of the child and their feeding, avoiding the pain caused by the repeated everyday use of the needle, through the pump the levels of glycated hemoglobin achieved are below 7 – results, which according to the specialists are tremendous success in the field of diabetology and which could not be achieved applying the old methods. (From 8.8 to 7.2, aiming at levels below 7.5 - within one year).
None of the patients of Varna Clinic has had the typical acute complications of the disease and has been hospitalized. Not only does pump therapy allow the achievement of normal life of the patient, it is also compatible with the treatment of other diseases or necessary operations.
The main issue is that the health authorities in our country do not pay anything for the modern sparing therapy. Bearing in mind the fact that insulin pump therapy has been conducted for more than 20 years in many countries, not only in the EU but also worldwide, Bulgaria still remains the only country in the European community, which does not reimburse any part of the therapy. Provided the parents of a child with insulin-dependent diabetes succeed in finding funds to pay off the cost of the pump, which is about 7500 lev, the sum of 350 lev for monthly consumables turns out to be unaffordable. The number of patients on insulin therapy in our country is not great – they are about 100, so the reimbursement of monthly consumables will not be such a great expense for the state.
The lack of reimbursement of the treatment of insulin-dependent patients, however, is just one aspect of the problem. Another one is the provision of an environment and opportunities for development, equal and in no way different from those of the other healthy children, which requires a team care – provided by a pediatric endocrinologist, diabetes nurse, parents, relatives, teachers, medical staff in nurseries, kindergartens and schools. At present, in our country it is often impossible to bring back children with diabetes to their usual environment and way of life after hospital discharge and the reason for this is the refusal of medical staff in nurseries and kindergartens to be part of the team providing care of children with diabetes. Their grounds for refusing such care are the fact that it is not included in their job description, as well as the lack of regulatory initiative and financial incentives for the medical staff, which appears to be of crucial importance for dealing not only with diabetes, but also with other chronic conditions.
At present, there are about 80 children with diabetes in Varna schools
and 9 in kindergartens, 4 of whom are on pump therapy. Practically though, to a
large extent the fate of the child and the family depends on a mere chance whether they will come across medical staff who
either have mercy to render help, or refuse to assist. Due to the lack of assistance
the child often has to be moved to another kindergarten, unwillingly to change their
friends, teachers and environment due to the diagnosis insulin dependent
diabetes mellitus. It is sometimes necessary one of the parents to quit their
job in order to be able to visit the kindergarten in order to measure the blood
glucose level and put insulin injections or send somebody else to do it. There
are even occasions when a parent has been required to stay all day on a bench
in front of the garden so that he/she is available in case the blood glucose
level needs to be measured
Four years ago Varna Society of Pediatric Endocrinology came up with an opinion and a proposal for a solution to the problem, addressed to the then Minister of Health. While the detailed project is still gathering dust in the files at the Ministry, Varna endocrinologists and the Municipality of Varna have decided to join their efforts and launch a pilot project for training of medical personnel and teachers in nurseries and kindergartens. "The goal of the project is to enable children with diabetes to attend the same groups and the same kindergartens, which they have attended before the disease. The diagnosis "insulin dependent diabetes" must not be a factor playing a key role in choosing the nursery or kindergarten and parents must not leave and change their jobs because of the refusal of the medical staff to take part in the care of children with diabetes. Worldwide this problem has already been solved by conducting training for medical staff and teachers from nurseries and kindergartens in order to involve them in taking care of children with diabetes. Algorithms are being developed that are available, as well as an individual plan for each child," explains Prof. Yotova. "We have already conducted two trainings of medical staff of a nursery and a kindergarten in Varna, we are visiting them on the spot and we have drawn up algorithms and an individual plan for each child with diabetes. Nevertheless, if the state does not take adequate measures, change the job description and provide supplementary financial remuneration for medical staff, the problem will remain pending. We want to fulfill the promise we have given because all children are entitled to grow up and develop in the environment in which their peers live, without being isolated due to their disease. We are confident that together with the Municipality of Varna we will succeed and will be a good example to other Bulgarian cities."