What is the right to be forgotten in cancer? 

This is the right not to be considered as having had cancer in different situations, such as when taking out life insurance or applying for a loan. This right prevents former cancer patients from having to justify their medical history and prevents them from being discriminated against.

In which situations do the greatest discrimination against cancer survivors occur? 

Patients suffer greater discrimination in areas such as the contracting of insurance, banking products (loans, mortgages), the labour market, access to housing and social perception.

The report Young people and leukaemia, elaborated in 2022 by the José Carreras Leukaemia Foundation, exemplifies some of these situations with data. According to the study - which involved 400 young people who had suffered from acute leukaemia or aggressive lymphomas - 83% of the patients stated that they had had difficulties when taking out life insurance, 70% when applying for death insurance and 47% when applying for a loan.

‘This is an increasingly frequent situation due to the progressive increase in the incidence of cancer and the improvement in survival thanks to diagnostic and therapeutic advances,’ Isabel Echavarría, scientific secretary of the Spanish Society of Medical Oncology (SEOM) and oncologist at the Gregorio Marañón University Hospital, tells SMC Spain.

How does discrimination affect patients' life development?  

‘These barriers have a profound impact on the psychological, emotional and economic well-being of survivors,’ Begoña Barragán, president of the Spanish Cancer Patients Group (GEPAC), tells SMC Spain.

‘When a discriminatory episode occurs, the person relives the disease,’ explains the vice-president of the Spanish Federation of Childhood Cancer Families (FEFCI), Verónica Ortiz. She also points out that, for a childhood cancer survivor, this rejection means ‘the impossibility of carrying out common tasks in adult life’.

Alexandra Carpentier, head of the Patient Experience Programme of the José Carreras Leukaemia Foundation, emphasises the importance of young patients: ‘The sequelae have direct consequences in many aspects in terms of developing life projects that were in place before the illness or which may arise afterwards’, she comments.

On the other hand, the scientific secretary of SEOM reminds us that this discrimination also ‘promotes the stigma associated with a cancer diagnosis’. Barragán agrees with her: ‘Social stigma can lead to isolation and affect personal relationships’.

How has the right to be forgotten in cancer been regulated?  

The right to oncological oblivion is included in Royal Decree Law 5/2023 of 28 June, approved in 2023 with José Miñones as Minister of Health.

With the approval of this measure, Spain complied with the European Parliament resolution of 16 February 2022 on strengthening Europe in the fight against cancer: towards a comprehensive and coordinated strategy. This established 2025 as the deadline for EU countries to regulate non-discrimination against cancer survivors in their own legal systems.

In addition, to ensure the effectiveness of the regulation, modifications have been introduced in the Revised Text of the General Law for the Defence of Consumers and Users and other complementary laws and in Law 50/1980, of 8 October, on Insurance Contracts.

How is this right implemented and what does it mean for patients?  

Rafael Vallet, partner in the commercial area of CECA MAGÁN Abogados, explains to SMC España that the right to be forgotten in cancer cases guarantees ‘that an insurance or banking entity cannot take into account the medical history as a pre-existing illness as long as five years have passed since the end of the illness and no relapse has occurred during this period’.

Vallet clarifies that its consequences are:

• The nullity of clauses, conditions or agreements that exclude one of the parties on the grounds that they have suffered from cancer within the aforementioned period.
• The prohibition of making differentiations in the contracting of an insurance policy for a person who has suffered from the disease.
• The elimination of the obligation to declare whether one has suffered from cancer in order to take out any insurance policy.
• The prohibition of oncological treatments being considered as a barrier to taking out insurance policies with higher premiums.

In addition, the president of the Spanish Association of Health Law (AEDS), Ofelia de Lorenzo, reminds us that ‘the right to be forgotten about cancer is a manifestation of the right to suppression’. This ‘gives individuals the ability to control and delete their personal data relating to their oncological history, as long as the legal deadlines for its application are met,’ she says.

How has this right been regulated in the countries of the European Union?  

As of December 2024, only nine Member States of the European Union have regulated in their legal systems the right to be forgotten or the non-discrimination of cancer survivors. The pioneer in establishing legal measures in this area was France, in 2016, and the most recent to incorporate them was Slovenia, last November 2024.

The most significant differences in the different regulations arise in the time that has to pass after the end of treatment, without evidence of relapse, in order to be able to exercise the right. On this point, our country - together with France - contemplates in its regulatory framework the most favourable period for the patient, five years. The European Parliament resolution stipulated a maximum of ten years for all patients and five years for those diagnosed before the age of 18.

What effects has the implementation of the regulation had? 

The Ministry of Health explained to SMC Spain that, although ‘the implementation of the regulation is being carried out progressively’, the royal decree law has meant ‘a step forward in improving the quality of life of cancer survivors’.

They also point out that patient associations have told them that ‘there is still a certain degree of ignorance about the royal decree’, so that ‘they are still not receiving much demand for information about specific situations that have posed difficulties for patients’.

What remains to be done to guarantee the right to be forgotten in cancer?  

Although the Spanish regulation is a significant step forward and sets an example in Europe, there are still requests for improvement from associations, patients and families. The vice-president of the FEFCI states that ‘it is necessary to ensure that the regulations are applied correctly’ and insists that ‘there are still aspects of the law itself that need to be developed’.

The head of the Patient Experience Programme at the José Carreras Foundation comments that ‘the literal wording of the new law only refers to the policyholder of a life insurance policy’. In other words, only for life insurance policies, the policyholder does not have to present medical oncological information. For any other type of insurance, this information does have to be provided, although it should not be taken into account either for refusal or for premiums. Carpentier points out that ‘the law should define this concept in any financial product’.

In addition, the regulation refers to the concept of "radical treatment ’ when it regulates the start of the period from which relapses are counted, currently stipulated at five years for the exercise of the right. Carpentier recalls that ‘there is no precise and specific definition of this concept, neither in the legal nor in the medical field’, so that ‘it is not known what treatments are included in this definition’.

In addition, ‘this law leaves out patients with chronic cancers with a good prognosis and long survival,’ he concludes.

For the moment, the Ministry of Health recognises that no modifications are contemplated in the royal decree for chronic patients. Nor is the inclusion of other types of financial products - beyond life insurance - in the regulations so that policyholders can avail themselves of the exemption from the need to provide medical oncological information.

What would be the most appropriate relapse period to regulate this right? 

The scientific secretary of SEOM explains that ‘the period of relapse differs from one tumour to another’, although the majority ‘are early, centred on the first five years and especially in the first two or three years after diagnosis and treatment’. Echavarría points out that ‘five years seems a reasonable period from an oncological point of view to regulate this right’.

‘It is essential to clearly define the moment from which this time is counted,’ adds the oncologist at the Gregorio Marañón University Hospital. ‘SEOM proposes considering it from the curative treatment that leaves the patient without disease, such as surgery or radiotherapy with curative intent,’ she concludes.

What are the improvements to the law that Spain is working on? 

The oncology associations and organisations point out that communication with the Ministry of Health on this issue is constant and that, as part of different working groups, they maintain dialogue with the Administration.

Health sources explain that since the approval of the legislation ‘meetings have been held both with patient associations and with representatives of insurance companies, aimed at a greater specification of the royal decree law’. ‘We are cooperating to move forward at a good pace,’ they say.

This includes the delimitation of the concept of ‘radical treatment ’ referred to in the law. ‘We are actively working to clarify it so that there are no difficulties in implementing the law,’ they say.

The administration points out that the regulation of the right to oncological oblivion could be assessed according to the different types of tumours or the age of the patients. In this regard, they comment that Spain is open to ‘learning from other EU countries’ that have a longer history in this area, pointing out special interest in the French model: ‘It will be one of those that will be studied in detail’.