Fifty thousand. This is the estimate of young people between 25 and 29 years old in Italy who had a tumor when they were children or adolescents, and who today are considered to be cured in all respects. Former patients for medicine but not for society, where the word “cancer” is not forgotten and where there is a long list of discrimination. Years or even decades after the end of the treatments. We are talking about serious discrimination, which prevents young people in the middle of their lives from being able to respond to the expectations of society itself. They emerge, for example, when they ask for a mortgage or a loan from a bank, or when they are offered a huge additional premium on their life insurance policy. Or, again, when they are refused the ancillary insurance usually required to cover the mortgage in the event of premature death. Yes, because the previous diseases, to date, must be declared, even if you are healthy and only concern the past. It is precisely to this theme, namely the so-called right to be forgotten, that the latest editorial of Tumori Journal is dedicated, signed by representatives of the Italian Association of Pediatric Hematology and Oncology (Aieop), of the Italian Association of Medical Oncology (Aiom ) and the Aiom Foundation.
Dedicated centers and more trials. This is what young people who have cancer need
by Tiziana Moriconi
“Get up, stand up”
There are scientific reasons that support the right to be forgotten. “First of all, the improvement of treatment paths, which lead to a continuous increase in healings, of 3% every year”, explains Paola Quarello, of the Department of Pediatric Onco-Hematology of the City of Health and Science University Hospital of Turin and member of the intercompany group of AIEOP and AIOM dedicated to adolescents and young adults with cancer, the first signature of the editorial with the evocative title ‘Get up, stand up: Alongside adolescents and young adults with cancer for their right to be forgotten’: “Furthermore pediatric cancers in a considerable percentage of cases relapse in a short time, within one or two years. This is why we consider the 5 years from the end of the treatments as an adequate time window to declare the clinical recovery from the tumor “. And if until a few years ago the scientific community was “satisfied” with achieving the result of healing, now it has realized that more must be done and also take care of the quality of life after cancer: “We do not treat cancer in a adolescent or young adult (AYA, acronym for Adolescents and Young Adult, ed.), but a teenager or young adult with a tumor ”, Quarello points out:“ And we must help them so that when they grow up they can have the same social opportunities as their peers. They have every right not to declare their history of illness ”.
Cancer and adolescence, a virtual condominium to overcome social isolation
by IRMA D’ARIA
The media paradox
In the article, an evident paradox of our times also emerges: sick children have learned the importance of sharing their experience, also of being testimonials in awareness-raising courses, for example to facilitate early diagnosis. And the means of communication par excellence are social networks. Too bad the web does not forget: it stores and shares information without time limits. “The boys want to talk about themselves. In the Youth Project of the National Cancer Institute of Milan – as well as in other similar projects in Italy – we have given them innovative tools to do so, using creativity and art “, underlines Andrea Ferrari, pediatric oncologist, responsible for the project. Young people from the INT and AIEOP and AIOM intercompany group dedicated to adolescents and young adults with cancer: “Being able to express anger and share emotions is a fundamental process that also allows you to find the resources to face the disease and seek an answer to the question ‘why me?’. We worked with them and together created a global model of care for children in care, and a new form of scientific literature. But the very experience of the story that we have encouraged so much to help them risks being a boomerang when they return to normal life ”.
Tumorial, the first video tutorial series to help teens cope with cancer
by MARIA TERESA BRADASCIO
The data indicate that about one third of former patients have difficulty accessing banking or insurance tools for buying a home and that 10% are unable to obtain personal loans. “But – Ferrari continues – the problem is not limited only to mortgages and insurance. Discriminations also concern the workplace, the possibility of adopting a child, obtaining the necessary certificates for driving licenses or for competitive sport. There are issues that they do not consider relevant today, but that when they are 30 they will be desperately so. We have created the paradox and we must solve it: children have the right to tell about themselves publicly, but they must also have the right to choose what, how and when. And to be able to erase what can harm their social life “.
Isolation, a video of the boys of the Cancer Institute explains how to deal with it
by TIZIANA MORICONI
One hundred thousand signatures for a law on the right to be forgotten
The request for a law on the right to be forgotten is an international requirement and 5 other countries have already achieved results: France (first), Luxembourg, Belgium, the Netherlands and Portugal already have a law. In April 2021, the Parliamentary Assembly of the Council of Europe recommended that member states take measures to remedy these “profound social disadvantages and discrimination”. Also in 2021, in Italy, Aiom and Aieop joined forces to set up the Italian AYA working Group, and the Aiom Foundation launched a collection of signatures to promote a law on the right to be forgotten in our country: the request is that a 5 years from the end of treatment for pediatric patients, and 10 years for adult patients, there is no longer the obligation to declare the previous illness to banks and insurance or credit institutions. “The objective of the petition supported by Aieop – concludes Ferrari – is to reach 100,000 signatures as soon as possible to bring to the Prime Minister”.
Right to be forgotten oncology: more than 60 thousand signatures for one million patients recovered
by Irma D’Aria
