Alfonso Dacasa, a 39-year-old from Barcelona, suddenly understood the importance of the "oncological right to be forgotten" the day he went to a bank to request a mortgage loan. This May it will be a decade since he overcame non-Hodgkin lymphoma, of which there is no trace in his body but a note in his medical history that has become a kind of alarm that goes off every time he crosses the door of a financial institution to ask for a loan or try to take out health insurance.
The agent who managed the mortgage explained to him that in order to grant it, he had to take out life insurance, a requirement that was apparently easy to overcome. A nurse from the insurer called him on the phone to carry out the procedure. "And I made the mistake of mentioning the word cancer, I should have kept quiet about it, because the moment you say 'cancer' the system crashes. 'Have you had cancer?' the nurse asked me. 'Yes, but it's in complete remission...' It didn't matter what I said afterwards. Then they called me from the bank and told me that the loan had been denied. 'Why? Because of the insurance?' 'No, no, the Does the risk committee see it as feasible?' 'For what reason?' 'That's internal'", Alfonso tells how they transferred the refusal to him with evasions.
He has also tried to take out a medical policy, but his cancer past made it equally "impossible." He has to renew his driving license every three years, also as a result of the cancer he suffered.
Marta Sánchez, a Madrid clinic assistant, is 31 years old and overcame acute myeloid leukemia when she was 13. So 18 years have passed. Like Alfonso, last year she applied for a mortgage loan with her partner. The bank also asked both of them to contract life insurance. "We did it through a manager and, when we filled out the forms, the manager told me directly: 'We are not going to deliver yours because you, with this problem you have had, are going to throw you away. They only granted us the mortgage with my insured partner but we lost half of the bonus", says Marta.
For Alfonso, for Marta and for the 1.6 million cancer survivors in Spain according to Gepac (Spanish Group of Cancer Patients), on April 19 the deputy of the PNV Idoia Sagastizabal asked in the Congress of Deputies if the Government was going to guarantee the right to be forgotten oncology, that is, "the right of those cancer survivors that financial institutions do not take their medical history into account to contract financial products", in the words of Sagastizabal herself.
Vice President Nadia Calviño responded by assuring that the Executive will do "everything possible" to carry out the legal modifications that guarantee it in this same legislature, that is, before the end of the year. "It is unacceptable that people who have suffered from a disease in the past be discriminated against, denied and restricted access to financial services," declared the vice president.
The right to be forgotten oncology was introduced into the public debate in Spain a little over a year ago, thanks to the Josep Carreras Foundation. In the entity they discovered the magnitude of the problem when they saw the data provided by the Young People and Leukemia study, which they presented in November 2022 and in which they surveyed people between the ages of 18 and 35 who had suffered or were suffering from acute leukemias and aggressive lymphomas. They had the responses of 400 young people, the most susceptible group, due to age, to request mortgages or loans.
"Among the things we asked them about -how had their experience with cancer been in everything that is not medical: university studies, at the work level, who took care of them...-, was access to insurance and financial products. What was not our surprise when we learned that 83% had had difficulties in processing life insurance, 47% a loan and 70% death insurance", explains Alexandra Carpentier, head of Patient Experience at the Josep Carreras Foundation . In the entity that fights against leukemia they began to inquire about the subject and the first thing they found is that there was no regulation in Spain in this regard.
They also discovered that a few months before the presentation of the report, in February 2022, the European Parliament had asked all Member States that, by 2025 at the latest, they should guarantee "the right to be forgotten for all European patients 10 years later." from the end of their treatment and no later than five years after the end of treatment for patients diagnosed before the age of 18" to "avoid discrimination and improve access to financial services for these individuals".
"According to the EU, in addition, there are only three member countries that do not have this regulation, Spain, Malta and Iceland. The first country to approve it was France in 2016, followed by Belgium, the Netherlands, Luxembourg, Portugal...", Alexandra Carpentier underlines the delay compared to our environment. "What have we done from the Foundation? Push and put the right to be forgotten oncology on the social agenda. And now it seems that there is a total agreement to regulate it," he adds, referring to Calviño's words and the approval, last 29th of March, by the Health and Consumption Commission of the Congress of Deputies of a Non-Legal Proposal (PNL) presented by the PSOE to request the regulation of the right to be forgotten oncology. The measure counted 31 votes in favor and five abstentions, these from Vox.
The new regulations would mean including it in the General Law for the Defense of Consumers and Users, which was modified in 2018 to protect HIV and AIDS carriers. "The law establishes that people with HIV or 'other health conditions' cannot be discriminated against in access to banking and similar products. HIV was a disease with a high mortality rate 15 years ago that today is controlled with pills, but the ' other health conditions' were never specified. This is what is going to be done now in principle to include cancer survivors, I imagine that in line with Europe. That is, from 10 years after total remission of cancer, the person's medical history cannot be taken into account to deny a financial product; and if the cancer was suffered before the age of 18, five years instead of 10", explains Alexandra Carpentier.
The expert also asks the Government to take chronic cancer patients into account when legislating, who will never be free of the disease and will therefore be outside those forks. "If they ask you to have completed 10 years after total remission, what happens with cancers that become chronic? Chronic myeloid leukemia, for example. Patients who take a pill a day for the rest of their lives and have a hope the same as the rest of the population but do not go into remission could be left in a new legal vacuum".
Juan Santiago, a 33-year-old employee at a law firm in Barcelona, views the regulation announcement with relief, although he will still have to wait six years for the oncological oversight to become effective in his case. He was diagnosed with leukemia in April 2019 and since November of that year, after undergoing a marrow transplant, he has not had a trace of the disease. Until 2029, therefore, he will not be free of her for a decade.
His experience so far with the financial world as a person who has suffered from cancer is a frustrated attempt to take out medical insurance (denied), the resignation of what he already had because they tripled the price and another refusal when he tried to take out a burial policy . "I had never considered it, but as a result of what happened to me [leukemia], I tried to do it, in case something happened to me that my mother would not have to take care of any cost, but they told me no," he says. He has just bought an off-plan flat and next year he will have to ask for a mortgage loan. "And I'm afraid they won't grant it to me because of my background," he says.
"If I remember correctly, according to the latest data from the SEOM [Spanish Society of Medical Oncology], survival in men is around 55% and in women 61.7%. That means that more and more people are recover or make the disease chronic and we have to promote non-discrimination against this group and create regulatory paths that help them reintegrate", says Clara Rosàs, manager of FECEC (Catalan Federation of Entities Against Cancer), who, in addition to the veto financial stresses the difficulties that survivors have to rejoin or start working life. "Going back to work is very important because it is the backbone of social life and at an economic level it guarantees stability. But we know that the risk of these people remaining unemployed is four times higher than that of someone who does not have the disease," explains Rosàs.
Marta, the young woman who overcame leukemia at the age of 13, is convinced that she has been marginalized in selection processes because of her cancer past. She now works as a clinical assistant in the Madrid public health system, but before, she says, she was rejected by various private companies until she decided not to say that she had suffered from cancer. "I have always spoken openly about my illness, because it is not something I have to be ashamed of. There will be those who take something positive, I think. But in the private company I had to hide it in the selection process, I did not lie, I just did not say it Because if you say so and there is another person with your educational level and your age free of the disease, they will always keep the other one. It happened to me in a couple of processes".
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