- Patient organizations in the Zrnko času initiative are asking politicians to devote time to patients with rare diseases.
- They consider unavailable treatment and diagnosis to be the biggest challenges in rare diseases.
- Patients need to receive modern treatment in time, before significant deterioration of the health condition.
Patient organizations within the framework of the Zrnko času initiative appeal to politicians to devote time to patients with rare diseases. They identified the unavailability of treatment and the long journey to diagnosis as the biggest challenges. The public can also participate in the initiative by filling out a quiz. The chairman of the White Butterfly organization Andrea Madunová, Daniela Fabianová from the Slovak Myeloma Society and Miriam Ladická from the National Oncology Institute informed about it.
“Patients need to receive treatment while they are still at their best, so that their health does not deteriorate. So that mobility and independence are as high as possible at the time of treatment. Often times, the process of entering drugs and categorization is disproportionately long. And this is an appeal to people who have the opportunity to change this, to speed it up and, as long as the treatment is available, so that it is administered.” the president of the Belasý motyľ organization told TASR.
The Grain of Time project also includes an interactive quiz about patients with rare diseases. “The time that people devote to the quiz is like symbolically gaining time for patients who don’t have it,” said Madunová, adding that the public will also learn interesting information by completing it. As she added, through the quiz she can empathize with the situation of patients with rare diseases who are waiting for their treatment. “Then the time goes differently than usual. This is what we wanted to express,” she pointed out. She added that after obtaining information, the public can also appeal to politicians to deal with the area.
Ladická and Fabianová explained that approximately 300,000 people are currently living with a rare disease in Slovakia. According to them, 7,000 types of rare diseases are known, 72% have a genetic origin and five percent are currently treatable.
Most patients wait an average of five years for a correct diagnosis, and many have been misdiagnosed at least once. At the same time, they pointed out that Slovakia is currently waiting for a decision on joining the payment system 82 medicines, more than a third of which are medicines for rare diseases. According to them, patients wait up to 23.5 months on average for these medicines.
