The ‘Right to be Forgotten’ for cancer survivors

Moves are afoot to help end the financial discrimination against the many people who have recovered from cancer

While the incidence of cancer is increasing, long-term survival rates continue to improve throughout the European Union. Survival benefit can be attributed to better prevention practices, extension of population-based cancer screening programmes, more accurate diagnostic technology and more effective treatment. At present, approximately 12 million people in the EU have reached long-term recovery after cancer and the number is rising by some 3 per cent each year. Although there are exceptions, people who are free from cancer for more than five-to-seven years after treatment are unlikely to develop recurrence.

However, the needs of people who have recovered are often serious, prolonged and, until recently, relatively neglected. They are often excluded from life assurance contracts or accessing other financial instruments, making property ownership or professional projects difficult or even impossible in some member states. Obstacles to access financial services represents a form of discrimination that unjustly interferes with rehabilitation and is often associated with unnecessary psychological harm.

During the past decade there has been a move to end financial discrimination against those who have recovered from cancer. In 2016, legislation was introduced in France to protect such people when seeking a mortgage, loan, or insurance. This initiative was followed by Belgium, the Netherlands, Portugal, Romania, Spain, Cyprus, and Italy. The waiting time before accessing these services and having the right not to declare their cancer varies among these countries. In France, the waiting time is five years. In Belgium, the time has been reduced from 10 to eight years and will be lowered further to five years in 2025. Moreover, in Belgium, proposals that there should be no waiting time for in situ breast cancer and one year for minimally invasive breast cancer were accepted and approved politically in July 2023. These types/stages represent about 50 per cent of all breast cancer patients in Belgium.

The outcome following treatment for cancers in children and young people has improved spectacularly in recent years. However, specific concerns remain including those around education and employment, social rejection, fertility, and long-term toxic effects of anti-cancer treatment. Financial penalties should not be an additional burden for survivors. The wait time before they can have access to normal financial services without weighting of premia should not be more than five years.

Code of practice

This issue of legislation has been discussed and supported at the European Parliament, but has not yet been approved by the European Council. Instead, in five member states including Ireland, a code of practice has been introduced by the insurance industry. The code states that insurers will disregard a cancer diagnosis where treatment ended more than seven years before the application or more than five years if the applicant was under 18 at the time of completion of treatment.

The code is not legally binding and, therefore, falls short of the aim to establish a legal framework to end the discrimination embedded in past practice. Concerns exist that being voluntary, it will lead to delay and postponement of a legislative process that should be applied throughout the EU and for cancer survivors. At present 16 member states have no policy for financial protection for cancer survivors. This matter requires urgent consideration.

Financial penalties should not be an additional burden for survivors

Historical survival data from national cancer registries provide a powerful foundation for setting out health policy. Necessarily, they cannot keep pace with advances and improved outcomes for cancer patients. It is possible to establish up-to-date dynamic reference grids reflecting contemporary practice and demonstrating progressively increased survival rates. Following the scientific evidence as accurately as possible would allow data to be updated regularly and re-evaluated periodically, perhaps biennially. Once the foundation legislation has been put in place, this arrangement would allow changes in the wait times to be facilitated by the insurance industry without the need to repeat cumbersome and complicated parliamentary procedures.

Collaborative dialogue

The public understands the insurance industry is concerned with coverage and service and that its work involves integration of different risk profiles. In insuring as many people as possible and to avoid exclusion of high-risk people, pooling of risk is required. In light of constantly improving outcomes, legislation for the ‘Right to be Forgotten’ must be based on contemporary statistics and must involve collaborative dialogue with the insurance industry. The Right to be Forgotten can be defined as the right of a person to have their data erased, without undue delay, by the data controller under certain conditions, and is a provision in the General Data Protection Regulation. In the EU cancer committee report, Strengthening Europe in the Fight Against Cancer – Towards a Comprehensive and Co-ordinated Strategy, the right is taken to mean the possibility for cancer survivors to get mortgages, loans, or life insurance without being penalised for their disease. It states by 2025 all member states should embed the right to be forgotten in relevant legislation to prevent discrimination and improve cancer survivors’ access to financial services.

A gathering called the High-level Conference on Ending Financial Discrimination Against Cancer Survivors was held in Brussels on 15 February. It was attended by former cancer patients, Commissioners, MEPs, State ministers, physicians, surgeons, scientists, insurance industry representatives, researchers, lawyers, administrators of cancer organisations, and advocacy groups. At the conference, a unanimous recommendation was made for concerted action in support of legislation for the Right to be Forgotten throughout the EU.

This campaign deserves the attention of all candidates in pending local and European elections and in the forthcoming general election.

It’s not about compassion; it’s about justice.

Prof Niall O’Higgins is a former President of the RCSI, European Society of Surgical Oncology, and Federation of European Cancer Societies, and former Chairman of the Accreditation Council for Oncology in Europe. He was extensively involved in establishing a system of symptomatic breast cancer services and in BreastCheck, the National Breast Cancer Screening Programme, as well as in the establishment of guidelines on quality of care for breast cancer in Ireland and Europe.