International Children’s Day with Cancer was launched 20 years ago and has always had the goal of raising awareness. In Portugal, Acreditar has marked this day since its inception and always draws attention to the problems that most affect this community at each moment.
Starting with the good national news:
Child cancer is treated in about 80% of diagnosed cases; The reference hospitals for childhood cancer are real centers of excellence where the best not only from a medical but also from a human point of view are the best, with teams of health, education, social support, psychiatry and psychology and support staff, the best that our country has ; There is a real will and energy for national research, especially on the part of clinicians, but also on the part of other professionals and institutions involved in research. Society is mobilized for this issue when it knows certain cases that raise awareness.
And on to the bad news:
There are still 20% of the cases where children and adolescents cannot resist the disease. There is a high percentage of survivors with consequences (after about 50% and after other 2/3). The consequences can be physical or psychological and in many cases are even disabling; Research into childhood cancer is beginning and there is a clear lack of funding and protected time to devote to research. Survivors face discrimination in society and this is reflected in their access to employment, insurance, and the right to consistent and planned medical follow-up. Families of children with cancer suffer from significant income cuts; There is almost no pediatric palliative care; Psychological support for families is scarce; The situation of PALOP patients coming to Portugal under collaborative arrangements is very difficult and we can mention the very late diagnoses, the severe lack of support that does not support these families and the lack of follow-up care when returning to the majority would like to stay in Portugal to support their children.
The position of Acreditar, an association that has been dedicated to this topic for more than 26 years, is to take advantage of the good conditions of the country in the previously identified areas to significantly improve the prognosis of the cure, the consequences and the quality of life of the survivors.
Since the numbers are relatively small (around 400 new cases per year in Portugal), with relatively modest investments and by setting up a well-formulated intervention plan, we can make a difference.
That the statistical information on childhood cancer is quickly consolidated so that this reality is known in detail and can be responded to more clearly; May childhood cancer be a national priority, as it has become at European level, with pediatrics being included in the European plan to fight cancer. The current no man’s land situation in pediatric oncology does not serve the interests of patients or the effective planning of the area. That the anti-cancer values at European level (4 billion euros), especially in Portugal, will be used to boost research and improve survivors’ access to universal follow-up visits; May patient associations be heard and be part of solving problems. The repository of lessons learned determines that they are equal partners with the organizations devoted to this matter, and here I include hospitals. Let the law of oblivion pass quickly so that cancer survivors can put their lives on par with those who have not had cancer. Renegotiation of the conditions for cooperation with PALOP, including the specialists who know this reality best and the patient associations accompanying them.
Without remembering the day, on behalf of those who did not survive, let us do the work that is necessary for those who want to live despite cancer.