Get a mortgage, adopt a child, get hired. These are some of the rights often denied to those who have had cancer, even if – as happens to almost a million people in Italy – they have gotten out of it. The fact is, however, that even if clinically recovered from the bureaucracy these people are still sick and therefore remain on the bench. To put an end to these forms of discrimination in access to many services, on the model of France, Luxembourg, Belgium, Holland and Portugal, the Aiom Foundation launches the first campaign for the recognition of the right to be forgotten oncology with the aim of obtaining a law that protects people who have had cancer.
Cancer: right to be forgotten for a million cured patients
by Irma D’Aria
Look to the future
Today, to request many services, it is necessary to declare if you have had cancer, even if you are already cured. In this way, patients risk discrimination in accessing services such as obtaining mortgages, taking out life insurance, hiring a job and adopting a child. “People cured of cancer must be free to look to the future without living with the shadow of the disease – he says Giordano Beretta, president of the Aiom Foundation. Today 3.6 million citizens live with a cancer diagnosis. 27% of them, about one million, recovered. There is strong social discrimination against them, which must be fought. As the Aiom Foundation we have decided to try to change things: with the campaign ‘I am not my tumor’, which includes a collection of signatures and a guide on the right to be forgotten oncology, we want to bring attention to such an important issue. We need to find the consent of the political forces for the approval of this essential provision ”.
“Voice from the dark”, that’s why sharing is good for those with cancer
by IRMA D’ARIA
Why a law
In order to really change things, a legislative measure is necessary: ”The law – continues Beretta – would make it possible to no longer be considered patients after 5 years from the end of treatment if the neoplasm arose in pediatric age and after 10 if one became ill in adulthood. Today, thanks to the innovation of therapeutic pathways, many tumors are treated and others can become chronic: for this reason the patients who live even many years after a diagnosis have increased and so the people who will benefit from this measure “.
When a patient can be considered cured
Each neoplasm takes a different time for the sufferer to be defined as ‘cured’: for thyroid cancer it takes less than 5 years from the end of treatment, for melanoma and colon cancer less than 10. Many lymphomas, myelomas and leukemias and bladder and kidney cancers take 15 years. To be ‘cured’ of breast and prostate diseases, up to 20 are needed. often insurmountable barriers. In the last two years, many European countries have enacted a law that guarantees former patients the right not to be represented by the disease. Italy must absolutely follow this example ”, underlines the president of the Aiom Foundation.
The guide on the right to be forgotten
In support of the initiative, the first guide on the Right to Oncological Oblivion, a web portal and a strong social campaign were created to promote the collection of signatures. The aim is to reach 100,000 adhesions, which will be brought to the Prime Minister to ask for the approval of the law. Everyone will be able to contribute by leaving their name, both online and in the oncology departments and in the streets: patients, caregivers, family members, citizens. The guide can be downloaded from the site and will be distributed in hospitals, to inform those who are not yet aware of this situation and invite them to act so that things can change.
What patients think
The portal also offers patients the opportunity to tell their own story, to highlight the problem and share experiences. “The difficult situation that many ex-patients find themselves living in is no longer acceptable – he explains Antonella Campana, vice president of the Aiom Foundation and member of the volunteer coordination of IncontraDonna. It is necessary to move towards a future free from the stigma of oncological disease. The protection of the rights of cancer patients also involves the legal recognition of a cure from cancer “.
“We patients – he declares Monica Forchetta, member of the Board of Directors of the AIOM Foundation and president of APAIM, the Italian Melanoma Patients Association -, we know what it means to be treated by fragile, perennially sick people. The neoplasm often becomes a label, even when it is no longer there. Today, however, there are so many people healed that it is necessary to realize the extent of the problem and take action to solve it. “
“We believe this is a great ethical and social challenge, a paradigm shift that starts with patients together with citizens, the scientific community and institutions. We are sure that the signature collection will highlight the need of ex-patients to be recognized by society as healthy people – he says Ornella Campanella, member of the Board of Directors of the AIOM Foundation and president of the aBRCAdabra association -. We want to put an end to the equation ‘cancer equals incurable disease’. For some neoplasms we know this is not yet the case, but for many it is now a reality and therefore we must decline the scientific evidence in everyday life and put an end to the inequities that still exist today. “
“We ask that all associations, oncologists, family members, caregivers, family doctors, nurses and citizens to mobilize with us to achieve the goal – he concludes Lucia Belli, member of the Board of Directors of the AIOM Foundation -. We are sure that we will also find the institutions on our side. Once the therapies are finished, the patient needs to be recognized as cured and cured: it is also the Code of Ethics of Nurses that foresees it, and we, as such, have the duty to value this aspect and we will commit ourselves in this direction. “