This section presents the status of the right to be forgotten throughout the EU. The first section focuses on the state of legislation in Member States while the second presents the initiative being led by the European Union.
As of 2023, six Member States have taken legal measures to counter financial discrimination against cancer survivors. France was the first to act on the matter and passed a law on the Right to be Forgotten for cancer survivors in January 2016, Belgium followed suit in March 2018. From January 2021, the Netherlands adopted the ‘clean-slate policy’, implementing the Right to be Forgotten, with the Portuguese policymakers adopting the law in January 2022. The most recent EU country that adopted the law is Romania (July 2022), making Romania a pioneering country in the CEE region.
The Right to be Forgotten affects adults differently, depending on when the disease occurred. According to the provisions in France, , the Netherlands and Portugal, adults whose cancer diagnosis occurred before the age of 18 years (in Luxembourg and Romania) or 21 years (France, the Netherlands and Portugal) would be forgotten 5 years after the end of treatment.
For individuals who receive treatment as adults, the situation is as follows: adults’ medical history would be forgotten after 10 years (the Netherlands, Portugal) following the end of their treatment (8 years in Belgium, 7 years in Romania, and 5 years in France) and without any evidence of relapse or recurrence.
In Belgium, a similar legislative proposal to the French law was adopted, namely:
Adopted legislative pieces vary depending on the implementing country, rendering it challenging to develop an EU-wide definition of the right to be forgotten. The common point, however, remains the same: to protect cancer survivors against financial discrimination, after a specific period of time has passed.
In addition to the general provisions, there are local specificities to keep in mind:
A list of specific exceptions has been published in annexes of these bills which includes specific conditions and shorter delays for cancers with an excellent prognosis. These lists of exceptions are reviewed either annually or every 2 years according to medical progress and statistics (mortality rate). These laws also cover other diseases than cancer such as Hepatitis C and VIH infections.
Please find here the compared information about the exceptions. The Belgian law has no maximal amount for the mortgage while there is a limit of 278.004€ (adjusted once every three years) in the Netherlands.
Legal Ref. : Law no. C − 2019/40839, 4 April 2019.
Promulgated in April 2019 and entered in force in February 2020, the Law modified the Insurance regulation (Loi relative aux assurance, C − 2014/11239, 4 Avril 2014) and reformed article 61.
The provisions are applicable to insurance contracts concerning mortgage and professional loans.
The provisions in articles 61/1 and 61/2 introduced the interdiction for insurance companies to take into account previous cancer pathologies after 10 years from the end of the successful treatment and the absence of relapse within the same period. It is considered a successful treatment the period from the end of the active treatment and the absence of a new manifestation of the pathology. When seeking financial products, cancer survivors by law must mention their previous condition, however, they cannot be discriminated against them. In addition, the Belgian regulation does not provide a limitation for the amount covered by insurance repayment contracts.
In May 2019, according to article 61/3, the regulation has been implemented through the adoption of a reference table (Doc. No. C − 2019/12990), which, similar to the French reference grid, determines a reduced term to apply the Right to be forgotten for specific cancer diseases. Every two years, the Belgian Health Care Knowledge Centre (KCE) assesses the reference table based on the medical progress and the available scientific data relating to the pathologies referred. The Belgian monitoring office of pricing (Bureau du suivi de la tarification) is in charge of the disputes relating to the application of the concerned provisions.
The reference grid (17-07-2023) can be found here.
In April 2022, KCE lead a first assessment focused on early stage breast cancer. Based on a careful analysis of survival curves for this type of cancer, KCE researchers have come up with proposals to shorten the waiting period which would potentially affect around 50% of breast cancer patients.
From February 2022, the Belgian association of insurers, Assuralia, adopted a code of conduct extending the application of the Right to be forgotten also to guarantee income disability insurance for people cured of cancer. The guaranteed income (or incapacity for work) insurance is insurance which, in the event of illness or accident, provides full or partial compensation for the reduction or loss of professional income due to the incapacity for work of the insured person (Article 201, §1, 2) of the Law of 4 April 2014 on insurance).
The code is binding on all insurance companies that are members of Assuralia. Belgium represents the first EU country to adopt such a code of conduct.
On 27 October 2022, the Belgian Parliament adopted a law (Law no. C − 2022/34022) aimed at broadening the Law of 4 April on the right to be forgotten in the context of insurance. With this law, the time that cancer survivors have to wait until they are “forgotten” was immediately lowered to eight years, and 5 years if cancer diagnosis before age of 21 years. In addition, it will be further reduced tofive years from 1 January 2025 regardless of the age of diagnosis.
When it comes to breast cancer survivors, Belgian took a step further in June 2023 when the Minister of Health and Social Affairs and the Minister of Economy and Employment advocated for a “faster” right to be forgotten for breast cancer survivors. Indeed, for individuals with breast cancer in situ, where the tumor is confined to its original tissue, the waiting period will be completely eliminated, and for breast cancer that has spread to other tissues but is still small or diagnosed early, the waiting time will be reduced to just 1 year .
Legal Ref: Code of conduct.
Denmark has implemented self-regulatory policies that provide options for persons with a history of cancer to access financial products under certain circumstances.
Insurance companies offer life insurance to individuals who have a previous history of cancer, subject to specific conditions such as the type of cancer and the duration since being cured. As part of these policies, insurers have voluntarily agreed to disregard prior cancer diagnoses after a certain period, and under certain circumstances.
Cancer survivors who have completed their treatment and remained cancer-free for a period ranging from 2 to 5 years become eligible for insurance coverage, albeit at higher premiums and typically limited to cancers with a higher likelihood of successful treatment. However, once an individual is considered cured with no evidence of disease or relapse, obtaining coverage becomes easier. The acceptance of insurance applications from cancer survivors is determined through a risk assessment process, and it should be noted that premiums for individuals with a cancer history may be higher compared to those without a history of cancer.
The proposal for a Law on the legislative establishment of the Right to Be Forgotten for citizens with a cancer history was unanimously approved by the Cyprus Parliament on 23 November 2023.
The approved law states that no insurance company will be able to reject an application by a cancer survivor if 10 years have passed since the completion of their treatment; or 5 years have passed if this person has been diagnosed with cancer before the age of twenty-one.(REF)
On November 2023 a Code of Conduct was officially endorsed by the Czech Health Ministry, patient organisations and insurance companies.
A Code of Conduct on the Right to be forgotten implies insurers’ voluntary commitment rather than legal obligations to protect cancer survivors against financial discrimination. This self-regulation standard will be established by the Czech Insurance Association (CAP), representing over 98% of the Czech insurance sector.
Legal Ref.: Articles L. 1141-5 and L. 1141-6 French Public Health Code; Law no. 2016-41, 26 January 2016 – art. 190 (V);
AERAS Convention (September 2023).
The Right to be forgotten has been endorsed as a legal provision in France in 2016, as part of the Law on the modernisation of the National Health System (Law no. 2016-41, 26 January 2016).
Thanks to the reform, France endorsed the art. 190, now Article L1141-5. The rule states that in the context of insurance or loan contracts, the period beyond which no medical information relating to cancerous pathologies can be collected by insurer organisms may not exceed ten years after the date of the end of the treatment or, for cancerous pathologies occurring before age twenty-one, five years from the end of the therapeutic protocol.
The content of the provision needs to be integrated by the standards in the AERAS Convention and the other norms in the French Public Health Code (as L. 1141-2).
The AERAS Convention (S’Assurer et Emprunter avec un Risque Aggravé de Santé/Insuring and Loaning with Aggravated Health Risk) represents a national agreement between the State, the professional organizations representing the credit institutions, the finance companies, insurance companies, social security and provident institutions as well as patients national organizations. The Convention aims to facilitate access to insurance and loaning for people presenting an aggravated risk due to their state of health or handicap. It ensures that credit institutions and finance companies take full account of alternative guarantees to insurance, defining also procedures for informing applicants, investigating their files and mediating.
The Convention applies, under certain conditions, to consumers, real estate and professional loan insurance.
A monitoring committee ensures the application of the Convention and respect for the commitments of the parties. Alongside this organism, it has been established also a Committee for studies and researches, responsible for collecting and studying the available data on mortality and morbidity caused by the main pathologies. A mediation committee is in charge of the examination of the individual complaints by applicants.
At the beginning of 2017, France adopted a new decree (Decree 2017-147 of 7 February 2017) to implement the obligation of information for insurers. By law, the insurer is responsible for giving an “information document on the Right to be forgotten” to applicants for credit repayment insurance, at the same time as the normal risk declaration form.
The provision has been further enforced by Decree no. 2017-173 of 13 February 2017, which relates to the penalties applicable to any insurers that do not conform to the legal time limit for the collection of medical information.
Recently, the new law n°2022-270 of 02/28/2022 (Loi Lemoine) “for a fairer, simpler and more transparent access to the borrower insurance market” significantly reformed the provision. The latter established the abolition of the medical questionnaire for mortgages of an amount less than 200,000.00 euros per person and which end before the 60th birthday of the borrower. These loans must also relate to the acquisition of property for residential use or for mixed residential/professional use.
For other loans that do not meet the conditions referred to above, the law strengthened the right to be forgotten by lowering to 5 years instead of 10 years (from the end of the therapeutic protocol and without relapse) the period after which no medical information relating to cancerous pathologies or Hepatitis C can be requested by insurers.
In this case also, the Convention can be applicable with shorter terms adapted for specific cancer diseases. In this regard, former cancer patients who have suffered from a pathology that falls within the framework of the reference grid can obtain an insurance contract under standard conditions after a time adapted to each pathology from the end of the therapeutic protocol. Although in these circumstances, for them exist the obligation to declare the diseases, and the insurance amount cannot exceed €420,000.00. According to the law, the diseases, and the corresponding time frames for the applicability of the provision are regularly updated by the monitoring committee, in line with advances in treatments and scientific data. The annual report of the monitoring committee is publicly available on the website of the AERAS convention.
No initiatives.
On April 15, 2024, the Ministry of Finance, the Association of Insurance Companies of Greece (EAEE) and the Hellenic Cancer Federation (ELOK) presented the Code of Conduct for the safeguarding of the right to be forgotten (RTBF) of cancer survivors in the life contracts associated with any kind of loan.
With the support of the Ministry of Finance, the Greek insurance market, recognizing the legitimate interest of cancer survivors to have access to high-socially socially important financial services, adopted a Code of Conduct for the safeguarding of the right to be forgotten (RTBF).
The Code of Conduct of EAEE is a text of self-registration of insurance companies, which was co-formulated with the Ministry of Finance and ELOK and concerns, in particular, the safeguarding of the right to be forgotten in the context of life insurance related to each type of loan either housing, professional or consumer, up to the total amount of € 300,000.
The enshrinment of this right means that insurance companies will not use the history of a candidate’s cancer patient after 10 years after completion of treatment and full treatment from the disease. This period decreases to 5 years, if the diagnosis of cancer was made before adulthood. At its core it is a right to non-differentiate a former cancer patient to any other person with a similar risk profile, free from the disease.
The EAEE member companies, which exercise life insurance, joined the Code, signaling in practice the commitment of the industry.
On December 5, 2023, the Italian Senate unanimously approved the right to be forgotten for cancer patients with 139 votes in favor. The initiative began in August 2023 when the Chamber of Deputies granted its initial approval.
The new law stipulates that individuals who have successfully completed cancer treatment and have been in remission for over ten years are now exempt from disclosing their cancer history when obtaining insurance, applying for a mortgage, or pursuing adoption. The same applies to paediatric cancer survivors after five years from the end of treatment.
The law was published in the Official Journal on 18 December 2023, and will be in force starting from 2 January 2024.
In Ireland, a new code of practice is set to enhance the underwriting process for mortgage protection insurance for cancer survivors starting in December. The code, which was announced in June 2023, introduces significant changes for insurers and cancer survivors.
One of the key provisions is that a cancer diagnosis will no longer impact the application if the treatment concluded over seven years prior to the submission. For individuals diagnosed with cancer before turning 18, this waiting period will be reduced to five years.
Under this new code, mortgage applicants who are cancer survivors can receive coverage up to €500,000 for their primary residence.
This initiative was developed by Insurance Ireland in collaboration with the Irish Cancer Society, as they recognized the difficulty many cancer survivors face in obtaining the necessary life cover to secure a home.
It’s worth noting that this code complements an existing exemption in the Consumer Credit Act of 1995, which allows lenders to apply specific conditions under certain circumstances.
Since the 1st January 2020, Luxembourg has introduced the “Right to be forgotten” to facilitate access to payment protection insurance for cancer survivors.
The initiative has been formalised through a Convention between Luxembourg’s Ministry of Health, the Luxembourg Insurance and Reinsurance Association (ACA) and eight insurance companies.
The Convention applies only and exclusively to the balance outstanding insurance for a loan or estate loan to acquire the main residence or professional facilities. For the same person concerned, it applies only within the limit of the maximum amount of €1,000,000.
The Convention does not apply to the acquisition of a second home or rental investments.
According to the provisions, the applicant cured of cancer is entitled not to declare his pathology when the therapeutic protocol for cancer has ended for 10 years (end of active treatment of cancer by surgery, radiotherapy, chemotherapy); or for 5 years, for cancer diagnosed before the age of 18.
During the mentioned timeframe, the absence of relapse is a requirement.
This Convention also includes a “list of exceptions” for specific cancer diseases corresponding to shorter terms for the application of the Right to be forgotten. In this regard, it exists an obligation to declare the disease and the protection from being charged with extra premium.
The system includes the establishment of a monitoring committee. This body is made by experts, with the power to examine individual complaints from rejected applicants, and ensure the respect of the provisions.
The Netherlands approved a set of rules to protect the privacy of consumers and limit insurers to ask about a person’s illness history for a certain period after someone is cancer-free. The rule applies to life insurance policies for applicants before the age of 71, and to funeral insurance policies that are entered into or concluded before the person to whose life the insurance relates reaches the age of 61.
Article 2 of the Decree states that the question of whether cancer has been diagnosed in the past in a candidate may represent the risk of disproportionate violation of privacy within the meaning of Article 3, first paragraph, of the Medical Examinations Act. For that reason, ensuring the balance between the different interests of parties, the decree rules that it is no longer allowed to ask whether someone has had cancer in the past when, according to the opinion of the care provider who treated the candidate, there was complete remission, and calculated from the moment when complete remission within the meaning of part a is established, no recurrence of cancer has been diagnosed for an uninterrupted period of ten years.
According to the explanatory memorandum of the Decree, if an insurer nevertheless asks these questions, Article 11 stipulates that the examiner has the right to refuse to cooperate. In concrete terms, this means that a former cancer patient does not have to provide information about this illness history if a life insurance company or funeral insurance company asks for it in violation of this decision. The applicant can submit any disputes about this to the Financial Services Complaints Institute.
In case, the insurance company may already be aware that its client has undergone cancer treatment, it may not include this information in its decision on an application to take out a new insurance policy or to change an existing insurance policy. The data may also not be used when setting the premium. Coverage limits are set at EUR 278,004, subject to adjustments based on the consumer price index every three years.
The norm establishes also that if the candidate is younger than 21 at the time the cancer was diagnosed, the term referred to in the first paragraph of this article is five years.
A further derogation concerns the application of shorter periods after which a candidate may no longer be asked whether he has suffered from a certain form of cancer in the past for forms of cancer for which, according to generally accepted medical insights and actuarial and statistical data, the chance of that cancer returning after a short period is so small that the prudential interest of the insurer is no longer compelling enough to still go to that form of cancer to ask. In this regard, agreements have been made between representative organizations of patients and insurers about the time limits to be used with regard to that form of cancer.
The Decree on insurance examinations for cancer survivors entered into force on 1 January 2021.
Legal Ref.: Projeto de Lei 691/XIV/2 Reforça a proteção da pessoa segurada, proibindo práticas discriminatórias, melhorando o acesso ao crédito e contratos de seguros por pessoas que tenham superado riscos agravados de saúde, consagrando o “direito ao esquecimento”
The 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. The text amends the Law nr. 46/2006 and the legal regime of the insurance contract.
In article 2, the text establishes the Right to be forgotten for people who have overcome or mitigated situations of aggravated health risk or disability when contracting housing credit and consumer credit, as well as when contracting compulsory or optional insurance associated with such credit. The law ensures that this group of people cannot be subject to an increase in insurance premium and/or exclusion of insurance contract guarantees and that, no health information regarding the medical condition giving rise to the aggravated health risk or disability may be collected or processed by credit institutions or insurers in a pre-contractual context. There are no defined maximum coverage amounts.
The Law provides three different timelines, after which no health information regarding aggravated health risk or disability may be collected by credit institutions or insurers:
a) Ten years from the end of the therapeutic protocol, in the case of aggravated health risk or overcome disability; or
b) Five years since the end of the therapeutic protocol, in case the disease occurred before twenty-one years of age.
c) Two years of ongoing effective therapeutic protocol in the case of aggravated health risk or mitigated disability.
In article 3, the text points out that persons at aggravated health risk” means persons suffering from any pathology which determines a long-term, evolving, potentially incapacitating, organic or functional alteration that alters the bearer’s quality of life at a physical, mental, emotional, social and economic level and is a potential cause of early disability or a significant reduction in life expectancy”. Moreover, in article 6 it states that “Persons who have overcome disability” means persons who can be shown to have been 60% or more disabled and who have recovered their psychological, intellectual, physiological or anatomical structures or functions, reducing their disability below this threshold. Besides, “Persons who have mitigated situations of aggravated health risk or disability” defines who are undergoing treatment proven to significantly and durably limit the effects of their aggravated health risk or disability situation.
Further details on the legal disposal need to be clarified, as for the reference table. An agreement shall define a procedure for the establishment of the grid that allows the terms and deadlines referred for each pathology or disability, in line with therapeutic progress, scientific data and knowledge of the health, credit or insurance risk that each pathology or disability represents. The reference table shall be updated every two years and shall be public.
The Portuguese law entered into force on 1 January 2022.
Legal Ref.: PL-x nr. 282/2022
Proiect de Lege pentru completarea Legii drepturilor pacientului nr.46/2003
Since July 2022, Romania implemented the Right to be forgotten for cancer survivors amending the law no. 46/2003.
According to the new provision, for insurance contracts, in case the distributor of insurance requires cancer survivors information and documents in order to assess the risk for insurance, the survivor has the right not to supply the documents referring to their oncological condition, if a period of 7 years has passed since the date of conclusion of the oncological protocol. For cancer survivor whose diagnosis has been made before the age of 18, the term is 5 years by the end of the oncological treatment.
The insurance distributors have the obligation to mention the right provided clearly, concisely, easily understandable and visible in the same visual field and with characters of the same size in the documents it requests information and documents for risk assessment, under the penalty of relative invalidity of the insurance contract. Moreover, in order to ensure the right to be forgotten, doctors have the obligation not to provide insurance distributors any information and documents.
As for the other EU national laws, the text sets out the possibility of shorter deadlines by age categories and types of oncological diseases of the cancer survivors based on scientific data regarding therapeutic advances.
In January 2022, Romania also adopted Law no.18/22 declaring the first Sunday of June as National Cancer Survivors Day. It aims to raising awareness and informing citizens about the challenges and solutions regarding improving the quality and increasing the life span of cancer survivors are organized at the national and local level.
The law also provides a definition of cancer survivors as people who no longer have the disease after the end of treatment, people who continue to receive treatment to reduce the risk of cancer recurrence and people who have the disease under control, have few symptoms and who receive treatment to manage cancer as a chronic disease.
References: Legislative Proposal.
After years of pressure from patient organisations, the Ministry of Minister is currently working on a law proposal modelled after existing legislation in other countries.
The law is highly anticipated
Legal Ref: Real Decreto-ley 5/2023v., de 28 de junio, por el que se adoptan y prorrogan determinadas medidas de respuesta a las consecuencias económicas y sociales de la Guerra de Ucrania, de apoyo a la reconstrucción de la isla de La Palma y a otras situaciones de vulnerabilidad; de transposición de Directivas de la Unión Europea en materia de modificaciones estructurales de sociedades mercantiles y conciliación de la vida familiar y la vida profesional de los progenitores y los cuidadores; y de ejecución y cumplimiento del Derecho de la Unión Europea (Chapter II).
Following a Council of Ministers on 27 June 2023, Spain approved the right to be forgotten. Individuals who have successfully overcome cancer now have the right to exclude their medical history when engaging in financial transactions in Spain. This right comes into effect after five years of completing treatment without relapse.
In the context of Spain, the Right to be Forgotten is introduced as a modification of Article 10 of Law 50/1989 on Insurance Contracts and represents the Fifth additional provision: Non-discrimination on the basis of HIV/AIDS, cancer or other health conditions.
Under this Fifth provision, the Law on Insurance Contracts is modified to read as follows:
1. Persons with HIV/AIDS and other health conditions may not be discriminated against. In particular, the denial of access to contracting, the establishment of contracting procedures different from those usually used by the insurer or the imposition of more onerous conditions, because of having HIV/AIDS, or other health conditions, is prohibited, unless they are based on justified, proportionate and reasonable causes, which are previously and objectively documented.
2. Under no circumstances may access to the contract, procedures different from those normally used by the insurer be established, more onerous conditions imposed, or a person otherwise discriminated against on the ground that he has suffered from an oncological pathology, five years after the end of radical treatment without subsequent relapse.
3. The Government, by Royal Decree, may amend the time limits laid down in the preceding paragraph and in the last subparagraph of Article 10 jointly or for specific oncological pathologies, depending on the evolution of scientific evidence.’
While this legislation is a step to be celebrated, the legislation contains unclear provisions that are yet to be specified by the government.
Additional resources: Fundación Josep Carreras contra la Leucemia published a comprehensive report on the effect of Leukemia on young people, detailing the societal impact of the disease which includes financial discrimination. Find the report here.
Sweden doesn’t have any specific legislation or a code of conduct related to the Right to be Forgotten.
However, some insurances companies in Sweden offer cancer insurances designed to provide financial assistance for treatment when cancer is diagnosed. It is important to note that this coverage must be obtained before a cancer diagnosis.
References: Cancer insurer and Cancer insurer.
The Swedish Government also provides a sickness benefit for individuals who are sick for longer than 2 weeks and aren’t able to work.
References: Sickness benefit by Swedish government.