Interview with Przemyslaw Marszalek, secretary of the MukoKoalition, conducted during the 1st Children and Adolescent Health Congress.
Przemysław Marszalek: Psychological help for cystic fibrosis patients is inadequate
Published Sept. 4, 2023 12:45
How does cystic fibrosis affect the health and psychological well-being of affected children and adolescents?
Mental health in cystic fibrosis is a big problem. The current situation for patients is that we have two diseases. One is one for which there is causal treatment, and the other is one for which there is still no such treatment. Both of these groups need psychological support. The group that still has no treatment, for various reasons, needs a great deal of support. Cystic fibrosis is a fatal, genetic disease. The children have to do a great deal of rehabilitation. It takes them several hours each day. It's a disease that affects the whole family. As in the whole health system, access to psychologists is quite limited.
How responsive is the health care system in Poland to the needs of patients and their families?
In cystic fibrosis, on the one hand, we have a situation where patients are treated in centers. There it is possible to consult every 2-3 months. In my opinion, however, this is insufficient. There are situations when both the child or teenager and the family need continuous psychotherapy. Under reimbursement it is difficult to get this and you have to spend your money.
The problem is undoubtedly the number of psychologists. What would have to happen for this situation to improve?
I am not an expert who will say where to get psychologists or how to change the health care system. What I can say from the perspective of a parent trying to get by in the system is that this help is inadequate. I'm counting on policymakers to find solutions?
What drug policy decisions are needed?
Causal treatment has been available for some time for a group of about a thousand patients. There is still a group of about 200-300 patients who are waiting for this reimbursement to be extended. These are children 6 years and older and patients with a specific mutation. We hope that the Ministry of Health and the manufacturer will agree as soon as possible and decisions will be made.
Thank you for the interview.
