Another extremely important meeting took place at the Ministry of Health of Ukraine – with Deputy Minister Yevhenii Honchar and the team responsible for the procurement of medicines for patients with primary immunodeficiencies.
An important topic was the harmonization of medicine supply and the logistical challenges that currently exist.
Special attention was paid to a critically important issue: some medicines are currently provided only for children under 18 years of age. At the same time, primary immunodeficiencies are congenital, genetically determined conditions that patients live with throughout their entire lives. Therefore, treatment cannot and should not be limited by age.
The issue of access to therapy for newly diagnosed patients was also raised, especially for those with ultra-rare (ultra-orphan) immune system disorders. Today, the path to receiving initial treatment may take more than one year, which requires a systemic solution.
A separate part of the discussion was devoted to diagnostics. The availability of genetic testing in Ukraine remains extremely limited, while a genetic diagnosis is often decisive for selecting the correct therapy, determining prognosis, and improving the patient’s quality of life.
It is important to emphasize: primary immunodeficiencies are not a sentence. Today, effective treatments exist for many conditions, and this group includes over 600 nosologies, making it one of the largest groups among rare diseases.
At the same time, the introduction a few years ago of neonatal screening for severe combined immunodeficiency (SCID), with the active support of the Ministry of Health of Ukraine, is already showing outstanding results – saving children’s lives.
The meeting was held with the participation of representatives of the patient community, and colleagues from the Ministry directly heard the most pressing challenges faced by patients with primary immunodeficiencies. The need for broader availability of medicines on the Ukrainian market was also discussed.
Martine Pergent actively participated in the meeting as the head of an international patient organization, sharing global experience. Ukraine is already demonstrating significant progress, including in comparison with some European countries. At the same time, our goal is to align with the best global practices and continue moving forward.
Based on the results of the meeting, it can be noted that constructive dialogue, openness, and readiness for cooperation on the part of the Ministry of Health team contribute to the development of effective solutions aimed at improving access to treatment for both patients and healthcare professionals.
