The State of the Right To Be Forgotten for Cancer Survivors in Europe (dr. Françoise Meunier)

Cancer patients that have been cured get told by their doctors that they can now finally forget about cancer and go on with their lives. However, in reality, they are often faced with several challenges because of their past diagnosis. The right to be forgotten refers to the right of individuals who have been cancer-free for years to access financial services.

Below is the transcript of the excerpt of the interview with dr. Meunier. The full interview will be published in autumn. Listen to the excerpt on iTunes or Spotify.

The right to be forgotten means that when accessing financial services, patients can cannot be discriminated against because of their past medical diagnosis of cancer. Dr. Francoise Meunier is a member of the Belgian Royal Academy of Medicine, she was Director General of European Organisation for Research and Treatment of Cancer for 24 years from 1991 to 2015. She is also Scientific Member of the European Cancer Patient Coalition and has been advocating for the right to be forgotten for almost 10 years. In this short discussion, which is an excerpt of the full interview, which will be published in autumn 2022, she explains how European countries started adopting the legislation to support the right to be forgotten.

Before we begin the discussion about the development of the right to be forgotten across Europe, it would be beneficial for us to describe or define what the right to be forgotten means in the context of cancer survivors. How would you define it?

Thank you for giving me the opportunity to speak about a topic very close to my heart. Yes, indeed the “right to be forgotten” for cancer survivors is a specific concept meaning that the patient who is cured should not be discriminated or penalized because he had cancer.

So this is to be distinguished from the right to be forgotten linked to the GDPR. This has nothing to do with GDPR. It's a separate issue. It is about the fact that cancer should not be taken into account. In fact, it's the cancer that should be forgotten.

As a doctor and researcher, when did you recognize the problem cancer diagnosis presents for patients survivors? How did you get involved in the advocacy for the right to be forgotten?

I started these activities on the right to be forgotten in 2013, when I prepared the first cancer survivorship summit, which took place in January, 2014. And what motivated my action at that time is that I observed tremendous progress in the field of medical care for patients with cancer.

When I graduated, as a medical doctor in 1974 announcing the diagnosis of cancer to a patient was a death sentence. For many cancers, we had no effective treatment. And the survivor rates were dismissive. While throughout the time of my medical carrier over 45 years I observed tremendous progress and a major improvement in the survivorship of patients with cancer.

Let it be breast cancer, testis cancer, Hodgkin's disease, children leukemia, many cancers. But the society did not realize, did not cope with the success of the medical field. And the society, meaning the employer, the bank, or the insurer, did not realize that cancer was no longer a death sentence. And that's how I enlisted the concept of cancer survivorship, particularly for financial toxicity.

I now concentrate my activities on financial toxicity. I was very much inspired by the French pioneer work with the first legal framework on the right to be forgotten, which was agreed in 2016. So this was the initial step, moving forward toward a right to be forgotten on the European level because it's unfair for cancer survivors in other countries than France, not to benefit from similar actions that were taken and proven effective in France.

To understand the problem better: when you say financial toxicity, can you illustrate that with patient stories that you came across? What kind of examples did you observe with patients that were kind of victims of financial toxicity?

Oh, there are plenty of examples of patients to whom we medical doctors, medical oncologists would tell you are cured, live your life, we no longer need to do all the tests, we need to do a follow-up after six months perhaps once a year or even not at all. I have two vivid examples in my close contact that came back to me and said yes, you say I should live my life, but I cannot buy an apartment or a home. The first example is a young woman with Hodgkin's disease. She's a civil engineer. Very smart. She developed Hodgkin's during her last year of university. Despite chemotherapy, she succeeded in her studies. She is now an engineer in a large company.

She got two kids, she was married. She is now 43 and she couldn't get a loan to buy a whole home. She's fairly effective in life and working and that is one example. I'll give you another example. Also a young woman, a lawyer would develop a brain tumor more than 10 years ago. And she had to stop working for a while because she had surgery. She moved from Belgium to Luxembourg and neither in Belgium nor in Luxembourg, and after eight years after surgery she could not get a loan. So here are two examples of two very active women working, feeling well, but stopped in their project in by the financial what I call and what is called by others, financial toxicity.

What do patients do in such cases so they can get a loan? So what's usually the next step for them?

Either their partner or husband can take the loan in their own name, or their parents or family. Or they decide to buy a smaller home of a small apartment or rent something instead of buying. But the problem persists also for other cancer survivors who need to buy, for example, a car for doing their job and so on. So it's not only restricted to loan and mortgages to buy a property, but it's also for professional roles.

The right to be forgotten has been most developed, or the whole story has been most advanced in France. And that's also what inspired you. So can you describe the evolution of the right to be forgotten in France? So we understand how society took the approach toward this right.

It was an initiative taken by the Institut de France who put together the insurer and the banker, and the legal responsible and decide on the common agreement to initiate this droit a l'oublie. Initially in a restricted framework with 10 years. So you had to wait 10 years after the end of treatment to have the right to be forgotten, that cancer can not be taken against you when you ask for a loan or a mortgage. That was the main framework that was put in action in 2016. And now we are in 2022 and we have significant feedback from the last year showing that actually it's very effective and it's even so that recently in 2022 in France they have decided to decrease the time, the delay from 10 years to 5 years.

Another major step to me is that there are loans that do not require a medical questionnaire. That is really important. You do not need to fill out the medical questionnaire in specific circumstances such as a loan of 200,000 EUR per person. So if you have a partner you can get a loan for 400,000 EUR, which needs to be reimbursed by the age of 60. This is a significant step which also should inspire the whole of Europe.

Only a handful of countries in Europe are working on the right to be forgotten. So in that context what was the sentiment in France that these changes occurred? Was the advocacy so strong? Was the public debate so loud or what were the factors that contributed to this constant improvement that we see?

Yes in France a whole group of patient advocates with breast cancer was extremely active and extremely instrumental. In 2016, after the French legal framework I started to say, yes, this is very nice. But since I have been working on the European level I believed it should be extended across Europe. I don't see why other European citizens should not benefit from the same framework. And so indeed Belgium followed, the Netherlands, Luxembourg, Portugal, and now there are four other countries who are actively working on such a legal framework, which is Italy, Romania, Cyprus and Ireland.

So there are four new countries trying to also implement it. But meanwhile, in parallel, the European Commission has been also very much involved in this through the European Beating Cancer Plan, which includes the right to be forgotten. And in addition, the European Commission also recognized The Cancer Mission, which is a major research program on cancer, and among the priority recommendations by the board of the mission is also research on the right to be forgotten. So we have two major European instruments - The Beating Cancer Plan and The Cancer Mission, which are addressing the issue of the right to be forgotten.

Now, the concept has gone through. Another major step has been taken. Under the French presidency a political declaration was signed by the trio: the French, the Czech, and the Sweden. And this declaration is going to be pursued throughout the Czech presidency and the Swedish presidency. And in that political declaration Action 24 requires that the right to be forgotten would be promoted through the EU countries.

But in addition, they took one of my recommendations, which is create an implementation network with experts from the five countries that already have the law, in order for the other countries not to reinvent the wheel and to base the legal framework on a European level on the same principles. We can accept some specificity from national specificity and modalities, for example, because the cost of housing is totally different in Luxembourg or in Romania or in other countries we can adapt the level of a mortgage, but the same principles should prevail. So this is really important that this implementation network with expertise from countries that already live with the right to be forgotten would be taken into account to accelerate the process across Europe. What the commissioner is wishing is that by 2024, the right to be forgotten would be accepted and available initially as the code of conduct, which is not binding, which is guidelines or recommendation, which I don't consider it's strong enough, but it has been accepted as such and it is the first step. And I think the more we have an observation of several years behind us like in France, the more people will be confident that it is not a catastrophic situation. And to my knowledge there is no single French insurance company, which became bankrupt because of the initiation of the right to be forgotten, on the contrary, now, they themselves, in France the largest insurer, decided to withdraw the medical questionnaire. So it shows that it is effective and it doesn't affect financial success.