50 million for SMA? Neurologist: There are things worth improving, but pediatric neurology is not only about SMA

50 million for SMA?  Neurologist: There are things worth improving, but pediatric neurology is not only about SMA

– SMA treatment in Poland is at a very high level, the biggest problems remain the lack of coordinated care and reimbursed medical transport, as well as low availability of rehabilitation. However, let’s not forget about other problems. I dream of introducing an operational program for the treatment of drug-resistant epilepsy in Poland and greater availability of genetic tests – says Prof. Katarzyna Kotulska-Jóźwiak, pediatric neurologist.

Katarzyna Pinkosz, “Wprost’: The government announced that the 2024 budget will include PLN 50 million additionally for the treatment of people with spinal muscular atrophy (SMA). When asked what exactly the money will be spent on, Minister Izabela Leszczyna replies that she will consult specialists on this matter. On the one hand, we hear that the SMA treatment program in Poland is one of the best in the world, and on the other – there are still parents who organize collections for gene therapy, and on fundraising portals there is an opinion that children die from SMA. If the treatment program is really so good, why these dramatic appeals?

Prof. Katarzyna Kotulska-Jóźwiak, chairwoman of the Coordination Team for the Treatment of Patients with Spinal Muscular Atrophy: When it comes to the possibilities of pharmacological treatment, screening tests, the network of centers dealing with SMA, as well as the beginning of coordinated care included in the drug program, in fact, compared to other countries in Europe and the world, the system of care in Poland for patients with SMA is very advanced. high level. Especially since the drug program, which includes all registered drugs, is combined with a newborn screening program financed from public funds. This allows for quick initiation of treatment, thanks to which we can achieve the best effects of expensive, innovative therapies.

I deliberately used the word “seed” of coordinated care, because this is probably the biggest challenge. There is a lack of adequate coordinated care, including rehabilitation, for people with SMA.

Patients and their parents talk about it, and we also often encounter situations where the results of pharmacological treatment are not satisfactory simply because the patient does not have appropriate rehabilitation. We are very keen to create a system that will provide the patient with coordinated and specialized care.

The second problem, reported especially by centers treating adults, is the issue of medical transport.

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