Summary

People are often asked to disclose their full medical history when applying for mortgages, life insurance, health insurance and travel insurance, potentially hindering cancer survivors’ access to these services ­– even years after the successful completion of cancer treatment.1-3 Insurers may exclude certain risks, including cancer, from their policy, demand higher insurance premiums or reject applications altogether.4 This is particularly damaging for childhood cancer survivors, who may have been successfully treated for cancer decades before their insurance application. To tackle this issue, France introduced the ‘right to be forgotten’ law, which states that some cancer survivors are exempt from disclosing their history of cancer to insurers – for example, people diagnosed with cancer before the age of 18 with more than five years since the completion of their treatment.5 The ‘right to be forgotten’ aims to reduce the socioeconomic burden on cancer survivors by improving their access to loans and insurance.

 

Challenge

When applying for insurance, cancer survivors are often asked to disclose their full medical history, including their cancer diagnosis. Based on this information, insurers may exclude certain risks, including cancer, from their policy, increase insurance premiums by up to 300% or reject applications altogether.3 4 This significantly affects people’s ability to obtain travel, health and life insurance. It also affects their access to loan-related insurance, which covers outstanding payments on a loan in the case of death, sickness or unemployment.4 In countries like France, where mortgages are rare, loan-related insurance is often mandatory when applying for loans, for example to buy property.

These issues significantly increased the socioeconomic burden on cancer survivors in France, acting as financial obstacles even years after the successful completion of cancer treatment.2 3 This was particularly true for childhood cancer survivors, with 10% experiencing difficulties obtaining a small loan and 30% struggling to obtain a home loan.

Solution

Recognising the scale of this problem, France introduced the ‘right to be forgotten’ as part of its national cancer plan in 2014.5 Formally adopted into law in 2016, the ‘right to be forgotten’ allows certain cancer survivors to apply for insurance without having to disclose their history of cancer.2 People diagnosed with cancer before the age of 18 are exempt from disclosure to insurers five years after the end of treatment. For people diagnosed after the age of 18, the exemption period begins 10 years after the completion of treatment. Even when insurers know about a person’s cancer diagnosis – for example, based on a person’s previous insurance claims – they are not allowed to incorporate this information into new insurance policies drawn up during the exemption period.2

 

What has it achieved?

In 2017, the French government published a decree as part of its public health code outlining how to inform candidates for loan-related insurance about their ‘right to be forgotten’.2 The law is currently in its implementation phase and information on its impact is limited. However, cancer patient organisations have reported an increase in questions about the ‘right to be forgotten’ since the implementation of the law.6 More than 40% of the French population report knowing about the ‘right to be forgotten’ and 84% believe that the law helps people return to a normal life.

Similar legislation was passed in Belgium in 2019, giving some cancer survivors the ‘right to be forgotten’ when applying for travel insurance, mortgages, personal loans and business loans.7

 

Next steps

Following the introduction of the law and its implementation decrees, future efforts in France will focus on evaluating the effectiveness and benefit of the ‘right to be forgotten’ for people with a history of serious illness.2 Knowledge of the ‘right to be forgotten’ is low among younger people in France – 62% of people between the ages of 18 and 25 have little to no knowledge of the law6 – and future efforts may focus on increasing awareness in this age group.

 

Further information

  • A publication in the Journal of Cancer Policy on the history and implementation of the ‘right to be forgotten’
  • A publication in the Lancet Oncology about the ‘right to be forgotten’ in France
  • The ‘right to be forgotten’ website by the French National Cancer Institute (French)

References:

  1. Youth Cancer Europe. 2018. White paper on the needs of young people living with cancer. Available here: https://www.youthcancereurope.org/wp-content/uploads/2018/10/YouthCancerEurope_Brussels_2018_WhitePaper-sm.pdf [accessed: July 2019]
  2. Mesnil M. 2018. What do we mean by the right to be forgotten? An analysis of the French case study from a lawyer’s perspective. Journal of Cancer Policy 15: 122-27
  3. Dumas A, Allodji R, Fresneau B, et al. 2017. The right to be forgotten: a change in access to insurance and loans after childhood cancer? Journal of cancer survivorship: research and practice 11(4): 431-37
  4. Dumas A, De Vathaire F, Vassal G. 2016. Access to loan-related insurance for French cancer survivors. The Lancet Oncology 17(10): 1354-56
  5. Institut National du Cancer. 2014. Plan cancer 2014 - 2019. Boulogne-Billancourt: Cancer INd
  6. Institut Curie. 2016. Observatoire cancer institut Curie: viavoice 2016. Paris: Institut Curie
  7. European Cancer Organisation (ECCO). 2019. ECCO celebrates Belgium's achievement of survivorship resolution. [Updated 11/04/19]. Available here: https://www.ecco-org.eu/Global/News/Latest-News/2019/04/NEWS-ECCO-celebrates-Belgium-s-achievement-of-Survivorship-resolution [accessed: July 2019]