Sonia Simón is no longer a girl. She is a master's student in Psychology who works helping children who are going through what she experienced when she was 15 years old. Then, in a hospital room, alone, the doctors told her that she had leukemia, a word she didn't even know. “Blood cancer,” they clarified. Her parents were not with her because they applied adult protocol to teenagers. “That's how I entered the world of adults,” she remembers. And from there to the adult plant, where the youngest was 40 years old. “Me, who was closer in age to the newborns!”
There were neither patients his age nor teachers on that floor. Older than 15 years old. But this is nothing with what came after. “Because we had it worse after cancer. It is when you really realize what you have experienced and, above all, the consequences,” she says. In her case, infertility.
Sonia is one of the patients who yesterday participated in the event organized by the Spanish Federation of Parents of Children with Cancer (FEPNC), which was attended by the Minister of Health, Mónica García, and in which they demanded the need to implement a follow-up for long-term survivors of childhood cancer throughout the country, with the aim of improving quality of life and finding specific assistance that is still not operational in some territories.
Every year, a thousand new cases of cancer are registered in children and adolescents, with five-year survival rates of 82%. According to figures presented by this federation, 75% of survivors experience some late sequelae and 25% of these are severe or life-threatening.
These are worrying data if we take into account that, currently, only nine of the 36 hospitals in which this associative movement intervenes apply a survivor monitoring program, which means that it is only carried out in 25% of hospital centers.
On the other hand, 21 centers of the 36 total, 58%, still do not provide coverage to the specific needs presented by a population that has a tumor biology different from cancer in adults and that is subject to potential risks to their health. derived from the consequences of the disease or treatment.
And the rest of the centers, although they apply it, do so incompletely, because there is a lack of psychosocial care or correct coordination with primary care, according to the coordinator of the FEPNC Health Commission, Ángeles Hidalgo.
Dr. Dolores Corral, from the La Paz University Hospital in Madrid, assured that “the follow-up program is essential because survival is increasing.”
“These survivors have numerous consequences. The most worrying are cardiac diseases because they are associated with greater mortality."
In this context, the Minister of Health, Mónica García, recalled that "one of the issues that is now on the table is support for long-term survivors." The goal, she said, is “to give more and better years of life.”
The FEPNC federation insists that this group requires personalized monitoring with a multidisciplinary approach that responds to the needs of each survivor, from the different levels of care.
“A determining factor that still remains unresolved in the majority of hospitals with pediatric oncohematology,” they reiterate.
The president of the FEPNC, Juan Antonio Roca, insisted that “Spain has unfinished business with specific health coverage for pediatric cancer survivors, because medical monitoring plays a crucial role at this stage.”
