Today, more than 3 million citizens are facing a cancer diagnosis and every year, one man in 3 and one woman in 4 will develop cancer.
The last decades have seen the cure rate dramatically improve with more than 55% of cancer patients medically cured of the condition. On an annual basis, the proportion of cancer survivors is increasing by 3% thanks to early diagnosis and innovative treatments that allow survivors to take part in socio-economic activities for the rest of their lives. Nowadays many cancers, such as breast cancer, childhood leukemia, and testis cancer, present survival rates are above 80%.
Thanks to the tremendous progress of medicine in the last decades, cancer is no longer a death sentence, and more and more citizens are able to enjoy a “normal” life, at least from a health point of view.
However, many cancer survivors face discrimination and penalisation when attempting to live return to their professional lives and realise their personal dreams. Ensuring cancer survivors’ quality of life needs to go beyond preventing the potential recurrence of the disease and must support their full integration and re-insertion into society at all levels.
Cancer survivors are indeed the object of several forms of discrimination, years or even decades after they were deemed cured by health professionals. They are, amongst other forms, discriminated against when seeking or returning to work or when trying to access financial services such as mortgages and insurance.
By financial discrimination, we mean the unfair and unequal treatment of individuals or groups (here cancer survivors) based on their medical history.
Financial discrimination occurs when people are disadvantaged, denied opportunities, or treated differently when trying to access financial services, solely due to their medical history. As a result of this discrimination, financial institutions such as banks and insurance companies might deny their services or provide different terms, often in the form of prohibitively high premiums, to cancer survivors.
Financial discrimination perpetuates and reinforces social and economic inequalities, making it harder for cancer survivors to live normal lives and fulfil their personal or professional aspirations.
The “right to be forgotten” (RTBF) in the context of cancer survivorship is a concept commonly applied at both national and European levels. It refers to the rights of cancer survivors to resume a “normal” lifestyle without encountering discrimination based on their past cancer diagnosis, after they have been declared cured.
In the context of financial discrimination, the RTBF demands that financial institutions (insurance companies and banks) disregard cancer survivors’ oncological past five years after the end of treatment (and in the absence of relapse), when they are considered to be cured from a medical standpoint. This aims to ensure that insurance companies’ and banks’ assessments reflect applicants’ current health status. The RTBF outlines that, after a specified amount of time after the end of their oncological treatment, cancer survivors no longer present added risks for financial institutions, and thus their cancer history should be overlooked. This allows for cancer survivors’ past cancer diagnosis and treatment to be “forgotten,” allowing them to return to “normal life.”
The “right to be forgotten” is also used as part of the General Data Protection Regulation (GDPR). In the latter, the right to be forgotten “gives individuals the right to ask organisations to delete their personal data.” Because the use of the “right to be forgotten” in those two contexts is the source of recurrent confusion, this initiative uses wording on “ending financial discrimination against cancer survivors”, which, although lengthier, enhances clarity and minimises confusion.
It is important to note that, in the context of cancer survivors, RTBF does not require the deletion of data about one’s cancer from personal records. Rather, it requests that financial institutions disregard a past cancer diagnosis and treatment when conducting their assessments after a given period of time after a patient is considered to be cured. Protecting cancer survivors must be balanced with the need for accurate medical records for patients’ long-term follow-up care and to support the development of epidemiologic research. This research, in turn, provides key information that financial institutions can use when conducting their risk assessments to make decisions that are based on the latest facts and figures, including survival rates.
Legal and policy frameworks related to the “Right to be Forgotten” vary between jurisdictions: in most countries where legislation exists (France, the Netherlands, Portugal, Romania, Spain), cancer survivors are not obliged to disclose their cancer history after a certain duration (between 5 and 10 years) following the end of their treatment and in the absence of relapse. In Belgium, however, a past cancer diagnostic must be shared with financial institutions but cannot, by law, be used to deny services or demand special conditions. Other countries have defined non-binding measures in the form of codes of conduct and agreements. For more details, check out the page about legislation across the EU here.