Organisations representing patients and their supporters are shocked by the way authorities «make children suffering from rare diseases in Latvia suffer», because the existing order under which medicines are secured ignores doctors’ decisions and recommendations.
This way the country contradicts its own regulations and international norms, the Charter of Fundamental Rights of the European Union and UN Convention on the Rights of the Child.
This is why representative of the campaign Droši par veselību! [Confidently about Health!] organised by Latvian Alliance for Rare Diseases, lawyer and Saeima speaker’s wife Kristīne Smiltēna invites the National Health Service, Ministry of Health, Saeima’s Social and Labour Affairs Committee towards closer cooperation with patient organisation in order to improve provision of medicines.
Chairman of the board of Latvian Alliance for Rare Diseases Juris Beikmanis, stresses that the existing practice towards children suffering from rare diseases indicates not only insufficient or inappropriate therapy but also excessive bureaucracy. It also outlines certain controversies with regulations and the
absurd order under which therapy and treatment is done by officials, not doctors.
«Ten years ago we secured recombinant medicinal products for children suffering from severe haemophilia A, which is something that has not been a problem in Europe since the 90s. Now this medicine is available to nearly all patients,» says the chairperson of the board of the Latvian Haemophilia Society Baiba Ziemele. She explains that science is not idle, as in 2018 Europe registered a medicine that provides protection against the risk of bleeding much more effectively and does not require intravenous injection.
«It was confirmed in multiple scientific publications in 2021 that this medicine can be used to treat children. […] Parents of our youngest patients regularly experience problems with ordering nurse visits to home in order to perform factor injections – they cannot perform injections on their own because it is difficult to find veins on children. Because of frequent bleeding these families are forced to run to hospitals and wait, and the regular bleeding causes irreversible damage to children’s joints and leads to disabilities,» explains Ziemele.
The head of Latvian Haemophilia Society stresses that for many children medical council had prescribed
new therapy as early as 2020, it remains unavailable to them to this day.
The State Agency of Medicines admitted in 2022 that the medicine is cost effective in providing prevention to people with severe haemophilia A. Other EU member states are confused why in Latvia the health of people, especially children, is not a priority. Parents are under constant stress and are at their wits’ end, because they see their children are suffering every day but the therapy available in other countries cannot be found in Latvia.
«We can conclude that not all medicines financed by the state are safe to be used to treat children. Physicians are often powerless in such situations – despite their conclusions, the state does not provide the medicines prescribed to the smallest patients. Doctors prescribe one thing, but officials provides something else entirely,» explains Beikmanis.
People who are not doctors «oddly enough» dictate the medial process. This situation is in breach of not only the Medical Treatment Law and Law on the Rights of Patients, but also does not inspire confidence of the confidence of authorities’ competence and respect of children’s rights. Beikmanis said he is confused over the lack of efficiency of the existing order.
The usual excuses of the budget being limited contradicts the facts, explains the head of Latvian Alliance for Rare Diseases: «According to information from the Ministry of Health, as of the 1st of January 2023, the balance for rare medicines was EUR 5 590 931. Children’s Clinical University Hospital’s own balance for treatment of rare diseases and their diagnosis was EUR 1 293 746.»
This means there was nearly EUR 7 million available in 2022 that could have been diverted towards patients suffering from rare diseases.
Kristīne Smiltēna reminded that when it comes to children’s health, it is important to keep in mind multiple regulations that serve as the founding principle for protection of children’s rights – the priority of children’s interests, which should be the priority when viewing any child-related topic.
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