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Right to Be Forgotten

Securing equal treatment and non-discrimination in financial services for European cancer survivors

The European Parliament’s Plenary recently adopted the final text of the EU Consumer Credits Directive which includes, for the first time in history, provisions that personal information like health data, particularly information on cancer, should not be utilised when determining creditworthiness. It also states that EU Member States should not allow the use of health data relating to oncological diseases when concluding insurance policies linked to credit agreements, if a certain period of time has passed since the treatment ended. Under the new Directive, EU countries can establish the suitable time for such period, which should not exceed 15 years. 

The current legislative situation remains fragmented, however, as only some EU Member States have national ‘right to be forgotten’ laws for cancer survivors. To date, France, Spain, Belgium, Luxembourg, the Netherlands, Portugal and Romania have adopted national legislative initiatives to recognise a ‘right to be forgotten’ for cancer survivors while accessing financial credit services. The number of years that have to pass to consider a medical condition ‘forgotten’ varies from country to country. In Belgium, Luxembourg, the Netherlands and Portugal - 10 years, in Romania – 7 years, in France/Spain – 5 years. Currently, Italy, Cyprus and Ireland are in the process of developing such legislative framework to allow recovering cancer patients not to share information about their previous condition with financial institutions.

ESMO is currently developing its advocacy campaign to encourage national governments to introduce a 5-year period when transposing the revised Directive with its ‘right to be forgotten’ provision, into their national legislation.

In addition to the aforementioned legislative initiative, Europe’s Beating Cancer Plan envisages the development of a non-binding EU Code of Conduct (CoC) on the fair access of cancer survivors to financial services, by EU Member States, patients, the insurance and financial sector, healthcare professionals and academia. The CoC, expected to be finalised in March 2024, will aim to ensure that changes in cancer care are reflected in the commercial practices of financial service providers. The European Commission (EC) has committed to closely examine practices in the area of financial services (including banking and insurance) from the point of view of fairness towards cancer patients in long-term remission. As part of this initiative, the EC published in May 2022 an exploratory study on the “Access to financial products for persons with a history of cancer in EU Member States”. 

Following on from the successful application, ESMO has been officially selected as one of the key stakeholders in the development process of the aforementioned CoC as it has been recognised that ESMO has the necessary resources and expertise to provide a valuable input to this initiative. As part of this process, ESMO has already responded to a survey (key issues below) providing feedback on the current existing difficulties, hurdles and obstacles, experienced by cancer survivors when accessing financial services and products:

Key issues

  • Cancer survivors are treated differently than ‘regular’ citizens when seeking to access financial products (insurance, mortgages or loans)
  • It is extremely challenging to acquire insurance – where it’s feasible - usually significantly more expensive and with much poorer benefits (house loans, rental accommodations, travel insurance)
  • Cancer survivors are excluded from premium services, receive higher fares/penalties or higher co-payments and are requested to present higher amount of paperwork
  • Cancer survivors are requested for regular revision of health status through copy of medical record check-ups and deliver medical records to the insurer to assess the risks
  • The current legislative situation remains fragmented – a legislative action is needed at EU level to define the exact standards, procedures, entities, responsibilities and rights for consumers, the penalties for organisations breaking the rules

In addition to the survey response, ESMO has been requested to provide comments on the Minimum Remission Period and advised that cancer patients should be treated in the same manner as other people of similar age and socio-demographic characteristics, with a universal RTBF of 5-7 years from the moment when the treatment ended as this approach is used in oncology statistics as an imperfect surrogate of ‘cure’ across all tumour types. ESMO suggested a five-year period as most cancers, if not all, have a risk of relapse which is considerably decreasing to a point where it likely becomes smaller than the risk of developing a new cancer, which is a risk shared by all healthy individuals. However, patients with metastatic cancer treated with Immunotherapy who are in near complete or complete remission 2-3 years after its conclusion, will likely remain so.

ESMO regularly provides its input to the development process to ensure that the future CoC includes appropriate measures to protect cancer survivors against discrimination regardless of their place of residence.

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