“On 21 March 2023, the CNEL Assembly approved a bill on Cancer Survivors' Right to be Forgotten”, said President Renato Brunetta during the conference held this morning at Villa Lubin on “Cancer Survivors' Right to be Forgotten: a battle for civilisation. Towards a law to protect people who have recovered from cancer diseases”. “The proposal”, he continued, “is aimed at allowing survivors not to have to declare their illness when they have to take out a bank loan, apply for a loan or sign a new employment contract. President was Tiziano Treu, rapporteur councillor Francesco Riva, who is the link between the previous and the current Council Term. It is a law of civilisation, desired by the CNEL because that is its role, sometimes recognised, sometimes unrecognised. But beyond what is said about CNEL, we carry out our tasks, which are set out in the Constitution. We provide opinions, to the Government and to Parliament. We propose legislative interventions. We stimulate social debate and discussion between intermediate bodies, on issues of importance for the country”.
The event, organised by the CNEL in collaboration with the Association “Le 12 Querce - Centro studi Tony e Andrea Augello”, was held in the presence of the Minister for Sport and Youth Andrea Abodi and former Minister of Health Beatrice Lorenzin. Current Minister of Health, Orazio Schillaci, sent a video message. It was an opportunity to take stock of the bill on Cancer Survivors' Right to be Forgotten, which was approved by the Chamber of Deputies on 3 August and now has to get the green light from the Senate.
BRUNETTA: NO STIGMA, IT’S HARM FOR SURVIVORS AND COMMUNITY
“The CNEL's bill”, the president continued, “is perfectly in line with the Charter of Fundamental Rights of the European Union, Europe's Beating Cancer Plan, and the European Convention for the Protection of Human Rights and Fundamental Freedoms, and is in line with the steps taken by many other European countries. The very idea of a social status of illness, different and parallel to that of the so-called healthy, which produces its effects even after recovery has been achieved, is a paradox to be avoided. Healing cannot turn into guilt. The stigma of vulnerability is projected onto the life plans of millions of people and their desire to plan for the future. An unacceptable damage not only for the citizens involved in this devious discrimination but for the whole community”, he concluded.
ABODI: IT ALLOWS YOU TO LEAVE BEHIND PERIODS OF ILLNESS
“I am happy to be here”, said Minister for Sport and Youth Andrea Abodi, “to give my personal testimony. In January 2021, after a phone call from the Umberto I hospital, I got to an appointment with life in which so many find themselves. I am here to share the need that so many people like me feel to leave that parenthesis behind. Once the regulation is finally approved, there will still be a lot of work to be done. There is the issue of care and quality of life. When, in a few months, we can celebrate this achievement for civilisation, it will be a milestone on an important path. The association Le 12 Querce is committed to this and I thank it”.
SCHILLACI: POLITICAL CONVERGENCE GREAT ACHIEVEMENT
“Those who recover from cancer”, emphasised the Minister of Health Orazio Schillaci, speaking in a video message, “are faced with other barriers that hinder their return to normality: finding work, adoption, taking out a mortgage or insurance. All circumstances in which having had cancer weighs like an indelible stigma. Putting an end to such discrimination is a battle for civilisation. Together with the Prime Minister, Giorgia Meloni, and with the entire government, we have followed the process of the law on Cancer Survivors' Right to be Forgotten with great attention, ensuring the necessary support to move forward smoothly. I consider the convergence of all political forces on this bill a great achievement on a human and social level”.
RIVA: IT’S AN EXAMPLE OF HOW TO RESPOND TO CITIZENS' NEEDS
"The law on Cancer Survivors' Right to be Forgotten is a virtuous example of how the CNEL is central to the country's proposal and decision-making processes. I would like to thank President Tiziano Treu, President Renato Brunetta, the Undersecretary to the Prime Minister Alfredo Mantovano, and all the CNEL’s officials who actively collaborated in the drafting of the bill, an example of how to provide a timely response to the needs of citizens devastated by severe pathologies, such as oncological diseases. The CNEL has shown that it is capable of fulfilling the tasks entrusted to it by the constituent fathers”.
This was stated by Francesco Riva, CNEL’s councillor and coordinator of the “Sport, Nutrition and Well-being'” Working Group, during the conference held this morning at Villa Lubin on “Cancer Survivors' Right to be Forgotten: A Battle for Civilisation - Towards a law to protect people who have recovered from cancer diseases”. The event was organised by the CNEL in collaboration with the Association “Le 12 Querce - Centro studi Tony and Andrea Augello”.
LORENZIN: LAW TO BE SCHEDULED IMMEDIATELY AND WITHOUT CHANGES
“I am happy to be here for something that is being successful. We have been talking about cancer survivors' right to be forgotten for years. I consider the fact that it was achieved right at the beginning of this legislature extremely positive. The best is the enemy of the good, so I hope that the law will be scheduled immediately and left as it is, without proposals for change. It is urgent that it comes into force”. These are the words of former Minister of Health Beatrice Lorenzin.
AUGELLO (12 QUERCE): A HELP TO GET BACK TO PLANNING ONE'S FUTURE
“Those who are born in Italy”, said Flaminia Augello (Association 12 Querce), “are lucky enough to be able to benefit from the expertise of an extraordinary health system. I have experienced it first hand, also from the point of view of psychological support. But you play against a really strong opponent. Today we are here to celebrate the lives of people who have made it, so that they can start over. We are here for those who are no longer here, but also for those who have made it and want to get back to planning their future”.
BOLDRINI (AIOM): CNEL SUPPORTED US IN THIS BATTLE FOR CIVILISATION
“The CNEL has supported our association”, said Mauro Boldrini of the AIOM Foundation (Italian Association of Medical Oncology), “in this battle for civilisation, to sanction what is unfortunately still a taboo: cancer can be cured. Cancer’s survivors cannot continue to live under the burden of stigma, they have the right to their own lives. The law on Cancer survivors' right to be forgotten is a battle that further enshrines the successes in early diagnosis and prevention”.
CINIERI (AIOM): YES TO THE LAW, LET ITALY FOLLOW THE EXAMPLE OF OTHER EUROPEAN COUNTRIES
“The #iononsonoilmiotumore (I’m not my cancer) campaign we launched enabled us to collect more than 100,000 signatures in just a few months. Being here today to discuss the law is a major achievement. Italy must follow the example of other European countries and guarantee the recognition of this right, which is an essential condition for a return to a dignified life. We demand that, 10 years after the end of treatment for adult neoplasia, and 5 years after treatment for paediatric neoplasia’s, patients can also be considered healed for society as well”. Affirmed Saverio Cinieri, president of AIOM (Italian Association of Medical Oncology).
COGNETTI (FOCE): VIRTUOUS PATH, LAW TO COME INTO FORCE BY NOVEMBER
“The CNEL's initiative represents a virtuous path, which resulted in a unitary proposal that was unanimously approved by the Chamber of Deputies in August. The Senate’s Health Committee has assured us that it will schedule the bill within a few days. By November, the law should become effective, immediately after approval by the Senate”. This was stated by Francesco Cognetti, president of FOCE (Confederation of Oncologists, Cardiologists and Haematologists).
THE NUMBERS, THE JOURNEY
In Italy, an estimated 3.6 million people survive after a cancer diagnosis. Approximately one million can be considered cured from a clinical point of view, since there is no longer any evidence of disease and there is no longer any oncological treatment. However, clinical healing must also be accompanied by social healing. The semantic stigma must disappear. This is why the CNEL has proposed a law on cancer survivors' right to be forgotten, which would protect the rights of those who have overcome a cancer, including the right not to give out information about their previous illness when, for example, applying for a mortgage or wanting to adopt a child. It is a law designed to overcome a vulnus that also indirectly compromises the country's economic development.
In Europe, many countries have done so, such as France, Luxembourg, Belgium, the Netherlands, Portugal and Romania. In Italy in recent years, the AIOM Foundation (Italian Association of Medical Oncology), together with numerous patient associations, has launched the #iononsonoilmiotumore campaign with a signature collection that has reached over 100,000 signatures. In the last legislature, numerous bills were presented, all of which lapsed with the end of the Draghi government. In December 2022, the AIOM Foundation contacted the CNEL, which, at the instigation of councillor Francesco Riva, carried out a series of hearings and in-depth studies, finally arriving at a proposal for a law, which took into account the needs of all stakeholders. The bill was approved by the CNEL Assembly on 21 March 2023.
Once sent to Parliament, the broad convergence of political forces meant that on 3 August the new “Provisions for the prevention of discrimination and the protection of the rights of persons who were affected by oncological diseases” were approved in the Chamber of Deputies. There now remains the Senate’s approval.