Europe for hemophiliac boy Darmin!
anticipation of World Haemophilia Day 2021, we are shocked and saddened in
Slovenia to hear the story of a boy from Bosnia and Herzegovina (BiH), named Darmin
who has a severe form of hemophilia (A). Darmin has developed inhibitors
against the coagulation factor that he receives as replacement therapy. The
development of inhibitors is the most serious complication in the treatment of
hemophilia, and treatment is laborious if the patient does not receive the
appropriate drug or is not receiving appropriate treatment.
When in Slovenia we came across the story of little Darmin from Bugojno, near Tuzla (about 130 km from Sarajevo), we could not believe that something like this could happen in modern Europe. We got in touch with his parents and the local hemophilia society to discover that everyone is in despair about the state apparatus of Bosnia and Herzegovina, which does not provide adequate treatment for Darmin, nor for at least three of his fellow patients. Darmin’s parents, as well as representatives of the Hemophilia Society told us that Darmin and his fellow hemophiliacs urgently need non-replacement treatment – a medicine that has been approved in Europe for several years. The situation is made all the more absurd with the knowledge that the medicine is supposed to be available in the Republika Srpska (which is to be commended), which is a part of Bosnia and Herzegovina, while the same medication is not available in the Federation of BiH. The people we spoke with said that last year they had been promised that the drug would be approved by the Federal Ministry of Health by the end of 2020. Nothing has happened since then. Representatives of the Society have said that their health insurance institution has no answer or solution to the problem.
Today, little Darmin is hospitalised and bleeding at the paediatric clinic in Sarajevo. His mother is with him, and tells that despite her helplessness she will not give up. Darmin’s father is exhausted by continued struggle with the system. The situation has left the family with psychological as well as employment and financial consequences. Darmin has been bleeding into his knee, elbow and ankle recently. And we hemophiliacs know very well what multiple bleeding into a joint means. This is followed by joint disease, which mostly ends with hemophilia arthropathy, deformity and disability.
“And despite hospitalization, the boy’s bleeding continues. Instead of being in school with his friends, Darmin is in hospital. We are waiting for the medicine to be put on the approval list, but this wait is doing my child immense harm,” Darmin’s mum wrote just before World Haemophilia Week 2021.
We cannot watch such suffering. Local hemophiliacs are outraged. They want to help by finding the fastest optimal way for Darmin to receive the medicine he requires. Even Europe cannot stand idly by. I believe that the World Federation of Hemophilia and the European Haemophilia Consortium have already tried to contact the authorities of Bosnia and Herzegovina to provide non-replacement treatment for Darmin and other hemophiliacs in BiH with inhibitors. If it failed the first time, we all have to succeed in the second attempt. It is a fact that the budget for the treatment of rare diseases in the Federation of BiH is too low, nevertheless this is not a matter to put on hold while patients incur risk.
What can individuals do about
all of this at the moment, how can we help Darmin and his fellow warriors in
Bosnia and Herzegovina? We need to stand together and communicate with one
voice, out loud, that it is unacceptable to leave people without treatment,
when the treatment is at hand. We must constantly point out that the competent
ministry of BiH must fulfil its promises and provide haemophiliacs with a drug
that can significantly improve their health and that they must be aware that a
poorly treated hemophiliac adolescent will cost the state apparatus
significantly more in the future than a properly treated hemophiliac today.
Therefore, at this point, I urge all of you who care about the health of little Darmin and the unity of his family to share his story wherever possible, because only in this way will we be able to remove the procedural obstacles to approve the new medicine and enable hemophiliacs in Bosnia and Herzegovina a better and calmer tomorrow. I also call on the World Federation of Hemophilia (WFH) and the European Haemophilia Consortium (EHC) to establish contacts once more with the authorities in Bosnia and Herzegovina and to help resolve the situation of disadvantaged hemophiliacs in the country as quickly as possible.
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Thank you to all of you good people, and good luck to Darmin!
We will succeed together!