Minister Izabela Leszczyna and Deputy Minister Maciej Miłkowski took part in the celebration of World Rare Disease Day, organized by the National Forum for Rare Disease Therapy ORPHAN.
Izabela Leszczyna: Plan for Rare Diseases in the second quarter of this year
Published March 1, 2024 09:13
- We will do everything possible to expand and improve the program on rare diseases and the care of patients with these diseases. As a start, I pledge that the Plan for Rare Diseases will be adopted by a resolution of the Council of Ministers later in the second quarter of this year," Minister Izabela Leszczyna announced.
She reported on changes in the treatment of patients with rare diseases that the Health Ministry is working on.
- Starting April 1, pregnant women with spinal muscular atrophy will be able to get treatment! All mothers-to-be with SMA will get access to the drug program and will be able to use nusinersen. This is very good news for parents-to-be," Minister Leszczyna conveyed.
The minister also announced that patients who have discontinued treatment due to injury or surgery, for example, will be able to continue without having to re-qualify for the program. And children with SMA will have access to reimbursed immunotherapy against the RSV virus.
Rare diseases pose a major challenge to the health care system. What is the Ministry of Health working on?
- Introducing into the basket of guaranteed services in the AOS two new genetic tests, essential for the diagnosis of rare diseases. The draft regulation will soon be consulted.
- Funding by the National Health Fund for diagnostic tests in rare diseases other than genetic diseases, such as metabolic diseases. AOTMiT is preparing recommendations on this issue.
- A catalog of non-oncology genetic tests is being developed.
- The Ministry of Health, the AOTMiT and the National Health Fund have prepared a model for financing centers specializing in the treatment of rare diseases, which will make it possible to bill services on preferential terms.
We will do everything possible to ensure that patients with rare diseases are properly taken care of," the minister stressed.
We are better than the Nordic countries in implementing innovative therapies. We are currently working on 33 reimbursement applications," explained Deputy Minister Maciej Miłkowski.
Source: MZ
