World Duchenne Muscular Dystrophy Day: Every Delay Can Mean Losing Another Function

For families of boys with Duchenne muscular dystrophy, waiting is measured not only in months but in lost physical functions that may never return.

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From the Republic Health Insurance Fund, we requested answers to two simple and concrete questions: when will the next groups of boys receive therapy, and when, under the existing plan, could the last child on the waiting list begin treatment?

About 65 boys in Serbia who meet the medical criteria for treatment still do not know when they will receive it, according to the DMD Serbia association. Seven patients have already begun therapy that can slow the disease’s progression, but parents of the remaining boys are asking authorities to find a solution for them as well.

Duchenne muscular dystrophy gradually reduces strength and mobility. In later stages, it can affect the muscles of the arms, the heart and the respiratory system. Because the disease continues to advance, the association says timely treatment is especially important.

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We understand that there are procedures and limitations, but we cannot accept that there is no answer to when children who meet the medical criteria will receive therapy.

On World Duchenne Muscular Dystrophy Day, observed on September 7, DMD Serbia called for clear answers from the Republic Health Insurance Fund. The association wants to know when the next groups of boys will receive treatment and when, under the existing plan, the last child on the waiting list could begin therapy.

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Our struggle is not against the institutions. On the contrary, we want to talk with them and find a solution together.

“We understand that there are procedures and limitations, but we cannot accept that there is no answer to when children who meet the medical criteria will receive therapy,” said Goran Vasović, president of DMD Serbia. He said the association was not seeking privilege or a bypass of procedures, but wanted the available time used as effectively as possible. Health Ministry Assistant Nebojša Tasić said rare diseases have remained a top priority for nearly 14 years and that the system would do everything possible to provide appropriate care for boys who need it. The source ends while he is discussing givinostat, the therapy received by the first seven boys.

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Rare diseases, including Duchenne muscular dystrophy, have been an absolute priority of the health system for almost 14 years.