Right to Be Forgotten
for Cancer Survivors
Why It Matters
The number of cancer survivors increases by 3% every year. In the last years, statistics on cancer survivorship in Europe have improved significantly. Overall, there are 20 million people living after a cancer diagnosis (4.2% of the total resident population, 35% of which is made of long-term survivors – having been diagnosed for 10 years or longer).
Once the cure of cancer is declared, patients should go back to their lives, like other people of similar age and socio-demographic characteristics with no cancer diagnosis. However, there are several reasons that render the return to an ordinary life challenging. Across Europe, having a history of cancer can be a major hurdle for access to financial credit services, particularly payment insurance products.
In this respect, some EU Member States – namely France, Belgium, Luxembourg, the Netherlands, Portugal and Romania – adopted national legislative initiatives to recognise a Right to be forgotten (RTBF) for cancer survivors.
All national provisions state that, in the context of insurances or loan contracts, the period beyond which no medical information relating to cancer may be collected by insurance companies must not exceed ten years (5 years in France) after the end of treatment for adults. French and Dutch legislations provide that, in case of cancers occurring before the age of 18 or 21, the term is five years after the end of treatment. Furthermore, these provisions include a list of exceptions for cancers with an excellent prognosis, for whom a shorter delay for the recognition of the right to be forgotten is provided. This list is regularly updated taking into account the tremendous progress of cancer management.
Finally, a major step forward has also been made in France as there is no longer needed to file a medical questionnaire for loans up to 200000 EU per person to be reimbursed by the age of 60 years.
News
Apr 2022 - Belgian research body recommends cutting waiting times for RTBF for some breast cancers
As part of its “right to be forgotten” mission, the Belgian Health Care Knowledge Centre (KCE) published its first report on breast cancer.
Among the others, the document proposes the removal of the waiting period for in situ cancers and a new waiting period of 1 year – instead of the current 10 – years for small (called T0 or T1) and early invasive carcinomas (stage I).
Based on the 10,452 cases of in situ cancer identified, no excess mortality was observed up to 14 years after the date of diagnosis. Consequently, the researchers propose no longer imposing a waiting period for people with this type of cancer.
The report is available here.
Feb 2022 - Italian legislators to discuss RTBF and access to adoption for cancer survivors
A new cross-bench proposal to offer fair treatment to cancer patients was presented in the Italian Senate on 28 February 2022. If passed, the proposed legislation will introduce the Right to be forgotten and, in a legislative first in Europe, will ensure that access to adoption is not limited by the health condition of an adoptive parent.
According to the text of the proposal, once passed the legislation will guarantee the right of people affected by oncological diseases to not be subject, after recovery, of discrimination because of their health condition, particularly with regards to access to banking and insurance services and adoption procedures. The proposal will now be debated and voted by the Senate and the Parliament.
The text of the drafted legislation is available here.
Feb 2022 - Right to be forgotten: New report highlights the challenges beyond cancer
A new report by the Irish Cancer Society shows that people living past cancer often experience unfair treatments and feel penalised, especially with regards to access to financial products and services. Manifold gaps on rules, policies, regulations, and individual rights leave people with a “frustrating, confusing, and stressful” experience.
Titled ‘The Right to be Forgotten beyond cancer: Access to financial products and services’, the report highlights that:
- Refusal and unfair treatment were the greatest reported difficulties experienced by those affected by cancer, at a higher rate than the general population.
- Only 1 in 4 people affected by cancer feel that they have been treated fairly when buying financial products in Ireland, compared to half the general population.
- Seven in 10 people in the general population and 9 in 10 affected by cancer believe that a cancer diagnosis should not mean having an additional premium on insurance costs or be a barrier to getting credit.
- Nine in 10 people believe that the Right to be forgotten should apply to people affected by cancer.
The full report is available here.
Nov 2021 - Portugal is moving forward to adopt the Right to be forgotten for cancer survivors
Portugal will implement the Right to be forgotten by January 2022
The Draft Law 691/XIV/2.ª Strengthens the protection of insured persons by prohibiting discriminatory practices, improving access to credit and insurance contracts for people who have overcome aggravated health risks, enshrining the ‘right to be forgotten was adopted by the Portuguese Parliament on 22 October 2021 and promulgated by the President of the Republic on 11 November 2021.
This Portuguese law will enter into force on 1 January 2022. Click here for more details here (in Portuguese).
Jan 2021 - Right to be forgotten for cancer survivors: discussion within the BECA committee
On 11th January 2021, the MEPs from the Beating Cancer committee discussed “Beating cancer – empowering patients and their caregivers” with ten leading experts in the field.
Mr Bartosz Arłukowicz, Chair of BECA opened the first session of dedicated to Patients’ Rights, including the Right to be forgotten, as well as patient-centred healthcare systems.
Prof. Françoise Meunier member of the scientific committee of ECPC was among the expert speakers to present the Right to be forgotten legal initiative, illustrating the key issues of financial discrimination former cancer patients have to overcome after have beating cancer.
More information about her intervention and the meeting can be found here and the recording of the BECA Committee meeting that took place on the 11th January is available here
The Right to Be Forgotten in Europe
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For more details, read our factsheet ”Right to be forgotten in the EU National Legislations” (see below).
“We support the transposition of the Right to be forgotten legislation into Union-level legislation to prevent unfair discrimination in cancer patients’ access to financial services and their reintegration into normal life.”
Prof. Françoise Meunier
The Role of ECPC
In 2020, ECPC started a new project on the Right to be forgotten with the support and under the supervision of Françoise Meunier. The initiative aimed at conducting a legal research project assessing and monitoring the discrimination that cancer survivors face when they attempt to obtain a mortgage, loans, life insurances, and other financial services.
This research project lasted for 2 years and involved most EU Member States, with the aim of raising awareness, but above all assessing the conditions for a common European regulatory proposal recognizing the Right to be forgotten for EU citizens.
The goal of the project was to enable the European Cancer Patient Coalition to map the current situation in depth in each of the EU Member States and to identify the actions that can be put in place at EU level taking into account that the Right to be forgotten has been included in the Europe’s Beating Cancer Plan road map, which was presented by the EU Commission on 4 February 2020.
The project was conducted by Grazia Scocca, legal expert, and coordinated under the supervision of Dr. Françoise Meunier.
If you have any questions please contact Dr.Françoise Meunier at doctormeunier@fmeunier.eu.
Public Events
Useful Documents
Newsletters
- Vote the Right to be forgotten on the Conference on the future of Europe https://ecpc.org/wp-content/uploads/2021/08/Vote-the-Right-to-be-forgotten-on-the-Conference-on-the-future-of-Europe.pdf
- 20 Million Reasons to Discuss Life after Cancer https://ecpc.org/wp-content/uploads/2021/08/EU-Survivorship-day.pdf
- 14 Million Reasons to Discuss Life after Cancer https://ecpc.org/wp-content/uploads/2021/04/Attend-our-webinar-on-the-Right-to-be-Forgotten_-14-Million-Reasons-to-Discuss-Life-after-Cancer.pdf
- Special-focused Newsletter on the Right to be forgotten https://ecpc.org/wp-content/uploads/2021/12/Special-focused-Newsletter-on-the-Right-to-be-Forgotten-no.02.pdf
Reports
- Report: “14 million reasons to discuss life after cancer: Implementing the Right to be Forgotten Across Europe” https://ecpc.org/wp-content/uploads/2021/03/Right-to-be-Forgotten_Event-Report-1.pdf
- Report: “There is Life after Cancer: Putting an End to the Discrimination” https://ecpc.org/wp-content/uploads/2020/07/There-is-Life-After-Cancer_ECPC_Event-Report-3.pdf