The Association for Duchenne’s Muscular Dystrophy in Bosnia and Herzegovina made a dramatic appeal to the public, the media and competent institutions, demanding an urgent solution to the issue of the availability of Givinostat therapy for boys suffering from this serious disease in the Federation of Bosnia and Herzegovina.
As the Association points out, the struggle of parents and their representatives has been going on for seven months to start and end the procedure for approving a special financing program for this much-needed medicine. Although in that period numerous requests, emergencies and letters were sent to the Federal Ministry of Health, the Government of the Federation of Bosnia and Herzegovina and other competent institutions, the final decision has unfortunately not been made to date.
Duchenne muscular dystrophy (DMD) is one of the most severe and aggressive rare genetic diseases. The disease causes permanent and irreversible muscle deterioration, due to which boys gradually lose the ability to walk, move independently and perform basic daily activities.
“As the disease progresses, it also affects the respiratory muscles and the heart muscle, which leads to life-threatening complications and, unfortunately, premature loss of life,” warns the Association.
Givinostat therapy represents a historical milestone, because it is the first therapy available to these children. To date, these boys have not had any therapeutic options that would slow down the course of their disease and were left to fend for themselves for years, while the disease progressed inexorably.
For affected boys, time is the most important factor. The Association emphasizes that every month of waiting means an irreversible loss of muscle function that no therapy can restore later. Any delay in making a decision has direct and tragic consequences for the health and future of children waiting for treatment.
The Association for Dyšen’s Muscular Dystrophy in BiH once again calls on the Federal Ministry of Health, the Government of FBiH and all relevant institutions to end the procedure without further delay and make Givinostat available to all children who meet the medical criteria.
“This is not a political issue. This is a question of children’s right to timely treatment, a dignified life and an equal chance for the future”, is a clear message from the Association.
The Association called on the public to support this fight and help the voice of children suffering from Duchenne muscular dystrophy to reach those who have the power and responsibility to make a decision that means life. Klix.
