KOTUR: SUPPORT OF REPUBLIC AUTHORITIES SIGNIFICANT FOR FINDING SYSTEMIC SOLUTIONS

BANJA LUKA, AUGUST 27 /SRNA/ - There are 255 different rare diseases and 1,200 patients registered in the Republika Srpska, and with new innovative therapies emerging every year, the support of republic authorities is of crucial importance for solving problems in this area systematically, stated the President of the Alliance for Rare Diseases Biljana Kotur.

Kotur told SRNA that continuous dialogue and cooperation between the Alliance and republic institutions are of key importance for improving existing rights and addressing new challenges faster and more efficiently. "We from the Alliance are the first to point out a problem, launch an initiative, and propose solutions, but their implementation depends on the readiness and support of competent institutions," says Kotur. She pointed out that numerous improvements in the health and social protection of persons with rare diseases recorded in previous years are precisely the result of institutional support and the readiness to recognize the needs of patients and integrate them into the system. Among the most important are the exemption from paying co-payments for health services, the provision of innovative therapies for certain rare diseases for which drugs exist /for which BAM 16 million is allocated annually/, the availability of about twenty drugs for rare diseases that are on the lists of the Health Insurance Fund and can be refunded, the provision of medical supplies for epidermolysis bullosa patients, as well as the recognition of rare diseases in health insurance regulations and the improvement of certain rights within the social protection system. "All these changes together have led to improved treatment options, the realization of social rights, and the overall quality of life for people with rare diseases and their families," Kotur stated. According to her, although much has been done so far, there is always room to improve cooperation and support due to the specific nature of rare diseases. "Support could, above all, be strengthened through the greater involvement of patient associations in the review and adoption of legal and procedural amendments, because the associations know best the problems that patients face every day. This happens occasionally and partially, but it is still not a universally adopted practice," Kotur pointed out. She believes that better coordination among institutions is needed, as a slower reaction from one part of the system can slow down or overshadow what another part has already done well. As a good example of support, Kotur cited the fact that the Republika Srpska allocates 10 million KM annually for innovative therapy for cystic fibrosis patients. "Significant funds were previously allocated for other drugs for this disease, and thanks to advances in treatment, out of a total of 27 patients in the Republika Srpska today, we have 10 adults. This is a great success, considering that there were none before because the disease clipped their wings too soon," Kotur said. On the other hand, she pointed out that the healthcare system is still not sufficiently adapted to the needs of adult cystic fibrosis patients, as there is no clearly defined multidisciplinary team for them. "Because of this, adult patients still rely heavily on pediatric services. We have repeatedly pointed out this problem and received promises that doctors for adult patients would be assigned and a cystic fibrosis center established, but we still do not have a concrete systemic solution," said Kotur.