The Right to be Forgotten: ESMO Calls on EU Countries to Ensure Equal Financial Rights for Cancer Survivors

LUGANO, Switzerland – As the ESMO Congress 2023 opens its doors in Madrid this week, the European Society for Medical Oncology (ESMO) calls all EU member states to act on the recently adopted final text of the EU Consumer Credits Directive by following their European neighbours Spain and France and guaranteeing cancer survivors seeking financial credit the so-called right to be forgotten after a period of five years following the end of their treatment. While a uniform application of the new Directive in national legislation will be essential to guaranteeing European citizens equal opportunities in life after cancer, the five-year mark constitutes a pragmatic, reasonable threshold supported by scientific evidence, for omitting cancer-related health data from assessments of creditworthiness.

The European Commission estimates that there are 12 million cancer survivors in Europe today, 300,000 of which are survivors of childhood cancers. (1) ‘Most cancer survivors currently face numerous forms of discrimination including the inability to adopt a child, barriers in the labour market, and, indeed, higher premiums on or denial of access to credit, banking products and/or any insurance services’, notes ESMO Patient Advocates Working Group’s representative, Natacha Bolaños. This is because to date, just seven member states of the EU 27 have adopted national legislation that recognises a right to be forgotten for cancer survivors accessing financial credit services. Last June, Spain joined France as one of only two countries to provide for this right to take effect at the five-year threshold advocated by ESMO. Such legislation is also currently being debated in Italy.

Making the case for a five-year threshold

Last month’s vote in the European Parliament on a revised EU Consumer Credits Directive introduced, for the first time in history, a legal stipulation that EU members states should not allow the use of health data relating to oncological diseases when concluding insurance policies linked to consumer credit agreements once a certain period of time has passed. The length of this period will be for national governments to define but may not exceed 15 years following the end of the loan applicant’s medical treatment. Building consensus across the bloc around the scientific basis for reducing this period to just five years is the last essential step to ensure that current and future generations of cancer survivors can resume a normal life with the same chances of securing a personal loan to achieve their future goals as their fellow European citizens.

For ESMO Director of Public Policy Prof. Jean-Yves Blay the complex issue posed by the directive is to define when the risk of the former cancer patient becomes equivalent to that of the general population. “Although the answer is difficult to pinpoint exactly and for all forms of the disease, what we do know today is that the vast majority of cancers that relapse do so in the first two or three years following treatment,” said Blay, explaining the medical rationale for ESMO’s call. “By five years, 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.” It can be expected then that survivors at five years have a life expectancy that is not significantly different from that of their peers of the same age and sociodemographic characteristics in the general population.

ESMO to contribute to an EU Code of Conduct for financial service providers

The call comes in a context where ESMO has been officially selected to participate in a stakeholder discussion organised by the European Commission as part of Europe’s Beating Cancer Plan to contribute to the development of a Code of Conduct on fair access of cancer survivors to financial services. As a professional society that gathers and applies scientific evidence to address questions related to the treatment – and survivorship – of all cancers, ESMO was selected to contribute with its relevant resources and expertise to this initiative alongside state representatives, patients, as well as healthcare, academic, insurance, and financial sector players. Among other tasks, the collaborative effort will involve performing a review of the medical evidence on cancer patients’ remission to inform the principles to be included in the future Code of Conduct, which is expected in March 2024.

“We are proud to assume this important role and look forward to leveraging ESMO’s research connections and capacities for conducting exhaustive literature reviews in order to bring forward the body of evidence that exists today in a wide variety of tumour types. By doing this work early on and to a great level of detail, we aim to foster broad acceptance for our recommendations and thus urge all EU member states to move in the same direction when implementing the revised Consumer Credit Directive,” Blay commented.

A campaign to make patients’ voices heard

As part of ESMO’s commitment to facilitating a uniform application of the right to be forgotten across the EU, the ESMO Patient Advocacy Working Group is preparing a pan-European campaign to raise awareness among national policymakers of the importance of equitable access to financial services for cancer survivors 5 years after the end of their medical condition, to allow them to fully rejoin and contribute productively to society as soon as possible. “This campaign will bring to key decision-makers in the different countries the message that cancer is often a curable disease and that people should be able to return to normal life in all its aspects—which also means regaining the capacity to obtain a loan for their house and for other large investments that are crucial for them and their families,” said Blay.

Blay concluded: “Our duty as a scientific and professional society is to provide and communicate data on which to base political decisions, and doing so through the voice of patient advocacy groups allows issues that are truly important to them to reach policymakers who have the power to pave the way for measures that will provide the desired and necessary equity. It is all about listening to the messages that come directly from the citizens, that is, those whom we, as doctors, and politicians serve. On the issue of equal access to financial services, we can demonstrate that based on the evidence available, this problem has a simple solution which certain countries have already successfully implemented, and let former patients explain in their own words the drastic difference that it can make in their lives.”

Notes to Editors

Please make sure to use the official name of the meeting in your reports: ESMO Congress 2023

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Disclaimer

Commentators quoted in the press release are required to comply with the ESMO Declaration of Interests policy and the ESMO Code of Conduct.

References

1. Source: European Commission