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Solange Vázquez
Madrid
Friday, 2 February 2024, 12:39
Experts predict that half of those born in Spain today will have to face dealing with cancer at some point during their lifetime. Fortunately, medical advances have meant that a cancer diagnosis is no longer necessarily a death sentence. Many patients are cured and plenty more will live with the disease long-term. Granted, some of these survivors will carry the bad memory with them for the rest of their days and, for some others, they will also carry the burden of suffering physical after-effects from the treatment. Of course, such outcomes are the lesser of the two evils, obviously, the most important thing being to survive. We are all aware of that truth... but cancer does leave behind a trail of collateral damage that we rarely think about, making life very difficult for survivors.
What happens if we have had a tumour and we approach a lender to enquire about a mortgage? What if we want to take out life insurance or adopt a child? What happens if we want to start a business? In these and other scenarios, those touched by cancer tell us that they encounter obstacles, even for things as everyday as renewing their driving licence.
They feel that they have become second-class citizens and that, no matter how cancer-free they are now, for certain organisations and institutions they are regarded as too risky.
For this reason, the European Society for Medical Oncology (ESMO), in collaboration with the Spanish Society of Medical Oncology (SEOM) and the Spanish Association Against Cancer (AECC), are joining forces to make two demands. Firstly, to protect the privacy and dignity of all who have beaten cancer. Secondly, to prevent any type of discrimination that might occur as a result of their cancer when assessing their financial solvency. The little-known, and rather poetic, term for this concept is The Right to be Forgotten.
Ángela Lamarca, representative on ESMO's press committee and medical oncologist at Fundación Jiménez Díaz university hospital in Madrid, explains it to us: "Having had cancer is a hindrance when accessing some services, especially financial ones. The Right to be Forgotten requires that, after five years of your cancer being in remission, all mention of it must be erased from your medical history and you are no longer obliged to declare it.
As this oncologist puts it, she's the one who first sees patients in distress as they stand up to this very difficult disease, helping them through all the treatment, only to see how, once science has done its job and cured them, a significant part of society "makes them feel excluded".
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For this reason, president of ESMO Andrés Cervantes adds that ESMO will sign up to the EU Code of Conduct, a code that aims to ensure that changes in oncology care are reflected in the commercial practices of financial service providers. Their primary aim is to make sure that cancer survivors can live their lives without being discriminated against or stigmatised.
"They should be allowed to get back to a normal life as soon as possible. To this end, we demand that the right to be forgotten is enabled after five years of being cancer-free". They both go on to explain that improvements in early detection of cancer and its treatment - with increasingly targeted and personalised treatment plans - has lengthened life expectancy. Many patients manage to beat the disease or live with it. To be more specific, cancer survival rates in Spain (2008-2013) stood at more than 55% in male patients and almost 62% in females. "This means that cancer survival rates have doubled in 40 years."
Moreover, they point out that, should a relapse occur, in most cancers this is more common in the first two or three years, less common between the third and fifth and even less likely beyond that. "We know that, after five years, these patients have a life expectancy equal to that of the general population of the same age and profile. Therefore, five years in complete remission is a reasonable and logical period," says Cervantes.
The European Parliament has passed a resolution giving EU member states up to 2025 to legislate for the Right to be Forgotten. To be exact, this right proposes that, after a reasonable period of time of being in remission, cancer-related medical records must be made inaccessible to third parties not directly involved in healthcare to prevent this information from being used against the cancer patient. In Spain the remission period is reduced to five years, matching that of France.
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Encarni Hinojosa | Málaga
Alfonso Torices (texto) | Madrid y Clara Privé (gráficos) | Santander
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