Even for those who have had cancer there is a right to be forgotten. So that, for example, access to finance – such as loans, mortgages and insurance – or to the world of work is not hindered by having been cancer patients.
Breast Health, the newsletter is born
Once you have crossed the hospital threshold for the last time, when for doctors and healthcare you are in all respects ex-patients, when you no longer enjoy the exemption of the ticket for pathology and when also civil invalidity back below the thresholds that guarantee some form of support, there is still a whole world for which one remains “sick” anyway. It is a complex question that has been discussed for years, also because on the other side there are private, non-public entities, with their rights and interests.
Towards a European law
“France was the first country, in 2019, to adopt a law that guarantees the right of former patients to be forgotten and, thanks to the action of patients, 4 other countries have followed suit: Luxembourg, Belgium, Holland and, recently, Portugal “, says a Breast Health Antonella Cardone, director of the European Cancer Patient Coalition (ECPC).
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What does the law provide? “After 10 years from the diagnosis for adult patients, and after 5 for pediatric patients, you have the right to no longer be considered as sick. There are also specific cases of some cancers for which these times are even reduced to one year”, explains Cardone, who spoke at the online conference “Right to be forgotten” organized by the Oncological Patients Italy Network – ROPI (you can watch the event on the association’s YouTube channel).
Together, the two associations are planning a series of initiatives to raise awareness among institutions, so that Italy is the next country to adopt this law within a well-defined European framework, in order to avoid disparities.
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“Survival – continues the expert – is now high for many cancers, and in particular it is for breast cancer. Many women are considered cured, yet they cannot draw credit, have bank credit lines or take out life insurance. . This law would instead require that after a certain number of years no one can ask them for information on the past as a cancer patient and deny credits for this. We hope that the institutions respond to this call to action to work together on a bill. We have already a valid model, approved in the other 5 countries “.
In Europe, both the Europe’s Beating Cancer Plan and the EU Mission Cancer have begun to work on the quality of life of people who survive cancer and both refer to the right to be forgotten in their programs. “We want to create a bridge with Europe”, says the president of Ropi Stefania Gori: “It must be borne in mind that 35% of those who live after being diagnosed with cancer are under the age of 65, therefore in the midst of active life. From a survey we disseminated among some patients, it emerges that one in 4 had difficulty accessing to bank loans. This is to give an idea of the problem that we all underestimate: it is a vast topic, ranging from the right to have a working life without discrimination to that of adopting children “.
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Stories of ordinary contradiction
“After the treatment I tried to ask for a mortgage loan from a bank to have liquidity, but the insurance did not give the authorization”, he tells us. Rachel, 48, from Nuoro, who had breast cancer in 2015.
“There is a contradiction: in many respects the State considers us cured, but for society we are not. I understand the reasons for the insurance that denied the green light, but at the same time I wonder what medicine really establishes for us ex-patients. I no longer have the ticket exemption, my doctors tell me I’m fine, we know that mortality from breast cancer has decreased, that many steps have been taken. But what statistics are valid when we try to return to live like everyone else? “.
“I was a cancer patient until 2015, with one thyroid cancer and two in the breast,” she says Antonella, 61, librarian in Chieti, after moving from L’Aquila due to the 2009 earthquake: “Just a short time ago I was contacted by a gentleman from an insurance agency, as soon as I said ‘look, I’m a cancer patient. I immediately replied ‘sorry if I disturbed you’, and hung up the phone. In an ideal world, you should be able to say that I have been ill and regulate a term from the last therapy after which you have the right to be forgotten ” .
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“I had breast cancer in 2008 and I did hormone therapy for 11 years, because it was small but aggressive,” he tells us. Sara (invented name), 48 years old. “Then I had a second kidney tumor, very small, for which I had surgery and no treatment. A year later for my Region, Emilia Romagna, I was no longer a cancer patient. ‘I paid on the job: I deal with human resources for an international company: they have always been very kind to me, but there are no more career opportunities. We are still a long way from a system that is able to exploit what you learned during a course of illness. I consider myself lucky, but if I had wanted to grow within the company I would not have had the chance “.
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“I applied for a mortgage after three years of getting sick,” she says Giorgia (invented name): I worked for a bank and knew that world well. I had the mortgage, but I didn’t take out the life insurance policy. I knew it would be impossible. “
What does healing mean?
In Italy there are over 3 million and 600 thousand people who have a cancer diagnosis behind them (more than 830 thousand with breast cancer: 29% for less than 5 years; 20% between 5 and 10 years; 18% between 10 and 15 years; 11% between 15 and 20 years; 17% for over 20 years) and it is estimated that about one million can be considered “cured”.
Healing is a term that must always be used with great caution in oncology and that actually has several different meanings. In epidemiology, it indicates former patients who have the same life expectancy as those who, for the same age and gender, have never had cancer. Since tumors are very different from each other, the number of years from diagnosis to cure will also vary from tumor to tumor.
Outside the world of medical statistics, however, when it comes to welfare and rights, then the word “healing” is used with a different meaning: once the treatments and controls are over, one is considered “out of the disease”. In the Anglo-Saxon world the term survivor is used. Discussing what is meant by healing and the individual risk of the tumor returning is not insignificant, because it is precisely on this terrain that the game of rights is played.
The open table with insurance
“The right to be forgotten is one strand of a broad discourse that we have been working on for many years,” he says Elisabetta Iannelli, cancer patient and Secretary General of the Federations of voluntary associations in oncology (Favo), who dedicated a chapter of his latest annual report to the subject: “There has been a long process of in-depth study with insurance and re-insurance companies operating at an international level, to understand how to give unambiguous and shared indications. We held a series of meetings with Ania, the National Agency for Insurance Companies, but we have not yet reached a solution “.
There are many ways to go: even within the Alliance Against Cancer the theme of survival care is being pursued: from the passport of the healed to the right to be forgotten. “In my opinion – continues Iannelli – a personalized and annually revisable evaluation of insurance policies will be essential, based on the state of science, because the risk of recurrence constantly decreases. This presupposes a continuous comparison between insurance actuarial statisticians and experts. of cancer registries “.
If corporate welfare suits everyone
However, there are positive signs that tell us that something, at least in the world of work, is perhaps changing: it seems that companies are becoming more sensitive to the issues of inclusion and cancer prevention, with a view to being able to have returns in the medium. -long period.
“We have recently completed a modeling of the costs that a company incurs for oncological diseases and the savings that can be expected based on the number of employees who do active prevention, which also concerns those who have already had cancer in the past”, he says. Luigia Tauro, Founder & CEO of KnowAndBe.live. You have dealt with breast cancer and it is no coincidence that your start-up deals with health promotion in the workplace. It does so in an innovative way, through digital tools, using advance analytics data and techniques, and helping companies to maximize the returns of health and wellness initiatives.
The study was conducted together with the consulting firm Bain & Company and shows that bringing 7 out of 10 employees to early detection and prevention could save up to 20% of the costs incurred annually for staff cancer diseases. “With the increase in the number of employees who are sensitized and who carry out active prevention against cancer, the number of people who fall ill decreases by up to 16% and the average cost incurred by the company is significantly reduced, with savings per employee that in companies valued so far exceeds 600 euros “, concludes Tauro:” One of my objectives for the near future is to create a general observatory of the world of work, applying the study model in each sector “.
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