Cancer cured and bureaucracy: a law for the “right to be forgotten”

We will hear about the right to be forgotten often in the coming months. Asking to be protected from discrimination against them are millions of Italians, treated for a tumor from which they are cured, but who risk not being able to have access to things in everyday life: obtaining mortgages, stipulation life insurance, hiring a job or adopting a child. The reason? Today in Italy they have to declare their previous illness and this risks compromising their ability to be granted what they ask for. It arises from these assumptions the first campaign for the recognition of the right to be forgotten oncology launched by the Aiom Foundation (Italian Association of Medical Oncology) with the aim of obtaining a law that protects people who have had a neoplasm, on the model of what has already been done in France, Luxembourg, Belgium, Holland and Portugal.

The word healing is no longer a tab

Are approximately 377 thousand new cases of cancer diagnosed every year in our country and, according to the latest surveys, they are 3.6 million compatriots alive after a cancer diagnosis: at least one in four patients (27%), almost one million people, can be considered completely cured because they have returned to have the same life expectancy as the general population. The word “healing” is no longer a tab – he underlines Giordano Beretta, president of the Aiom Foundation -. Today, thanks to the many advances made with prevention, early diagnosis and new therapies, many cancers are treated and others can become chronic: for this reason, the number of patients living even many years after a diagnosis has increased. Of course we must keep in mind that each neoplasm takes a different time for the sufferer to be called cured: if, for example, thyroid cancer takes less than 5 years after treatment, less than 10 for melanoma and colon cancer. Many lymphomas, myelomas and leukemias, and bladder and kidney cancers take 15 years . To be “cured” of breast and prostate neoplasms, up to 20 are needed.

Acute, chronic, long-term patients have different needs

The ranks of cancer and former patients are swelling every year, but what experts have been highlighting for some time is the need to have clear distinctions between the different categories. There are the so-called acute patients, who have recently been diagnosed and are still in the course of treatments or have had a first relapse. Then there is the ever-growing host of gods chronically ill, which can live with the tumor for years, alternating phases of disease remission with relapses or slow progressions: a growing group that can have a good quality of life. Then there are the long-term sufferers, who have not had signs of the disease for years, but due to the type of cancer they suffered remain at risk of relapse (even after a long time) or, due to the therapies performed, are more likely to develop second cancers. In the end the recovered, whose life expectancy returns equal to that of peers who have never had cancer – explains Beretta -. They have the right to be defined as healed and to fully enjoy this status at a social and occupational level, as well as a medical and psychological one. 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.

The campaign and a collection of signatures

In support of the initiative, the first guide on the right to oncological oblivion, a web portal (rightallobliotumori.org) and a social campaign, to promote the collection of signatures. The purpose reach 100 thousand subscriptions, 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 wards 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 opportunity and invite them to act so that things can change. The portal also offers patients the possibility of tell your story, to highlight the problem and share experiences. In the last two years, several European countries have enacted a law that guarantees former patients the right not to declare their disease if they are cured. In Italy, on the other hand, to request many services, it is still necessary to declare whether you have had cancer despite the cure. The law would make it possible to no longer be considered a patient after 5 years from the end of treatment if the neoplasm arose in pediatric age and after 10 if one became ill in adulthood, Beretta points out.

Appeal to the institutions

The difficult situation that many ex-patients find themselves living in is no longer acceptable – he says 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 know what it means to be treated by fragile, perpetually sick people – he continues Monica Forchetta, president of Apaim, Italian Melanoma Patients Association -. 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 citizenship, the scientific community and institutions – adds Ornella Campanella, president of the aBRCAdabra association -. We want to spread this message: even if you are or have been a cancer patient, you are not your cancer. This should also put an end to the equation cancer equals incurable disease. It also adds to the appeal Lucia Belli, nurse and member of the Board of Directors of the Aiom Foundation: We are sure that we will also find the institutions on our side – he concludes -. We ask all citizens to mobilize with us to achieve the goal.