General Hospital “Prim. Dr. Abdulah Nakaš” in Sarajevo announced that at least 65 patients diagnosed with pulmonary arterial hypertension (PAH), a rare but serious disease affecting the pulmonary arteries and heart, are being treated in Bosnia and Herzegovina.
Although therapies that, as they mentioned, prolong and significantly improve the quality of life are available in the European Union, in the health system of the Federation of Bosnia and Herzegovina this disease remains without adequate treatment.
Amina Helja (29) from Sarajevo has been fighting this disease for 15 years. She warned about the slowness in determining the diagnosis and the unavailability of medicines in all parts of Bosnia and Herzegovina.
“As for Republika Srpska, they have both medicines available for pediatric and adult patients”, pointed out Amina and called on the competent institutions in FBiH to make innovative medicines available and financially covered for patients.
She asked and would like the patients to get, as she stated, their future.
“Without therapy, we have no future. We can’t even breathe, live, work, let alone raise families and have a future,” she said.
The director of the General Hospital “Primary Dr. Abdulah Nakaš” pointed out that through conversations with patients, whom they invited today, they want to point out rare diseases, which in countries such as Bosnia and Herzegovina, are still insufficiently illuminated.
General Hospital “Primary Dr. Abdulah Nakaš” today organized an expert conference entitled “Pulmonary arterial hypertension – a disease that needs to be treated”.
“This is an opportunity today, one of the ways in which we want to influence those responsible. The health insurance institute has a fund for the treatment of rare diseases, and we want pulmonary arterial hypertension, that is, patients with pulmonary arterial hypertension, to be recognized as a serious health problem and a serious economic problem because it is a disease that leads to disability,” said Doctor of Science Anela Šubo.
Prof. Ph.D. Edin Begić pointed out that the treatment of rare diseases in cardiology practice is a challenge for every healthcare system, that patients are successfully diagnosed (along with the evaluation and heredity of the disease), but that the pharmacological modality is currently insufficient.
“Optimizing pharmacological treatment is imperative, all with the aim of improving the patient’s quality of life,” said prof. Ph.D. Begić.
The goal of today’s conference is to send a clear message to the wider health community – patients with pulmonary arterial hypertension must be treated with specific therapy, which represents the standard of modern medicine and which, unfortunately, is currently not available to all patients in FBiH.
While in Bosnia and Herzegovina patients with PAH are fighting for basic rights to diagnosis and treatment, the countries of the EU and the region have for years had national patient registries, teams of multidisciplinary experts and fully covered treatment costs through health insurance. Thanks to such an approach, the expected life expectancy of patients in those countries has increased by more than ten years in the last decade, said General Hospital “Primary Dr. Abdulah Nakaš”, writes Klix.
