Official position of the association’s Management Board
DEAR LADIES AND GENTLEMEN,
The problem with the treatment of children with oncohaematological diseases has existed since 2009. For many years the association and parents of children with cancer have been alerting the responsible institutions that medicines which are part of the core protocols for treating children are periodically dropped from the Positive Drug List. For years nobody did anything to solve this problem and to ensure adequate treatment. In 2015, thanks to the association and to journalists, the problem was partly solved when Minister Moskov ordered that medicines for treating cancer in children that are not authorised for use be paid for by the Fund for the Treatment of Children. Cumbersome as it was, the procedure began to work and for a while things went quiet — and once again nobody did anything to find a lasting solution. After the Fund was closed and its functions were transferred to the National Health Insurance Fund (NHIF), the problem deepened because of the cumbersome bureaucratic procedure. Treating cancer in children requires medicines to be given on a precisely defined schedule and at precisely defined intervals! There is no time to wait for committee decisions, signatures and administrative deadlines. Treatment must start on time and be given properly!
What needs to be done is for the STATE to find a mechanism to supply all the necessary medicines to the three clinics in Bulgaria where children with oncohaematological diseases are treated.
After several working meetings with Deputy Minister Nacheva, held from October 2018 to date, at which the problem with the supply and reimbursement of the medicines was clearly stated, a specific commitment was made to change the rules of the procedure for dispensing the core medicines, with the change to take effect immediately from 1 May 2019. Nothing has changed!
As a result of the inaction of the institutions we have alerted — the Ministry of Health and the NHIF — and of the deepening of the problem since 1 April 2019, we demand the following:
- An immediate working meeting attended by representatives of the three clinics where children with oncohaematological diseases are treated, representatives of the hospital pharmacies, representatives of the NHIF, representatives of the Ministry of Health and representatives of the association. Such a meeting was promised to us for the beginning of June, but it never took place.
- Uninterrupted supplies of the medicines included in the core protocols for treating oncohaematological diseases in childhood must be ensured.
- Hospitals must be able to order and purchase forecast quantities of medicines, and the administrative processing of the documents must no longer be the parents’ responsibility. Doctors must no longer have to write opinions and fill in piles of documents so that the hospital can obtain medicines that are part of globally recognised, proven treatment protocols. Doctors must treat, not write!
The Management Board of the Association “Children with Oncohaematological Diseases”, supported by parents of children who are currently in treatment, of children who have been cured and of those who lost the battle, gives the responsible institutions until 10 July 2019 to take urgent and adequate measures to meet these demands and to supply medicines to the three clinics, thereby guaranteeing adequate, timely and high-quality treatment for all children with oncohaematological diseases in the country. If, yet again, the problem is not solved within this deadline, we will go out and protest until it is finally and lastingly resolved!
20 June 2019