Earlier this month (March 2021) the Polish Ministry of Health prepared and submitted the Plan for Rare Diseases to the Chancellery of the Prime Minister for public pre-consultation. Patient and medical communities have awaited this document, and the comprehensive approach to diagnosing and treating rare diseases it presents for many years.
As highlighted on the Polish government website, the main objectives of the Plan for Rare Diseases are to improve the diagnosis and treatment of rare diseases in Poland according to the standards adopted in the European Union, improve access to high quality and innovative healthcare services, and increase knowledge on rare diseases. In order to implement these objectives, the Plan for Rare Diseases contains approximately 40 tasks to be implemented in the period of 2021-2023.
The Plan for Rare Diseases focuses on the following areas:
- establishing Centers of Expertise for Rare Diseases;
- improving diagnostics of rare diseases, including access to modern diagnostics using large-scale genomic testing;
- improving access to medicines and foods for particular nutritional uses to manage rare diseases;
- creating a Polish Rare Diseases Registry;
- introducing rare disease patient passports (an e-document); and
- creating an Informational Platform: "Rare Diseases".
As reported in The First News, the costs of introducing the Plan for Rare Diseases are estimated at over PLN 90 million (circa EUR 19,6 million). What is more, about PLN 750 million (circa EUR 163,4 million) a year will be allocated for medications from the Medical Fund. Additional funds will also be provided by the National Health Fund, which will begin to finance new genetic diagnostic methods. Between PLN 30 and 50 million (circa EUR 6,5 and 10,9 million) is to be provided for this purpose. Furthermore, the Agency for Medical Research has allocated PLN 100 million (circa EUR 22 million) for projects to develop new therapeutic procedures in the area of rare diseases as part of ongoing non-commercial clinical trials.
The Plan for Rare Diseases has been highly anticipated in the community and while its development is considered as a huge step forward, its adoption may constitute a real breakthrough in both access to diagnosis and treatment and care for patients with rare diseases. However, the wording of the Plan for Rare Diseases is still subject to change as the process of its review has just begun.