Cancer has turned my life upside down. It touched my body, my deepest identity. I started questioning myself about the meaning of life, about death, about what it means to have a changing body that would soon undergo major therapies and go through early menopause. And all this in a society that does not accept fragility, but constantly judges it”.
For Laura Marziali, the diagnosis came at the age of 28. She beat cancer since, but nothing has ever been the same. “The day after my discharge from the hospital, I already noticed that I was perceived as different”, she recounts. First, a theatre director considered her too weakened to resume her role. Then, men started turning their backs on her because she could no longer give them the children they desired. But the real awareness came when she wanted to buy a car. “When it came to negotiating the terms of the loan, the insurance company that was supposed to secure it told me: ‘We can’t take on this responsibility, you had a tumour that could return at any moment”.
And yet, no. Laura is one of the estimated 20 million people in the EU, who have survived or live with cancer. A double degree in Law and Psychology and a long-standing commitment to improvisational theatre, Laura has since been touring Italy with ‘C’è tempo’ (“We have time”), a show named after the association she founded to advocate for the rights of cancer patients.
“Even after they’ve regained their health after battling cancer, individuals attempting to return to their ‘normal lives’ quickly realize they face obstacles in getting access to financial services for buying property, adopting a child, or advancing in their careers”, explains Françoise Meunier. A member of the Belgian Royal Academy of Medicine and founder of the European initiative to end discrimination against cancer patients, she’s been devoted to oncology for nearly 50 years. “At the beginning of my career, a cancer diagnosis was often seen as a death sentence. Yet, thanks to tremendous medical advancements, much progress has been made and for example over 95% of men diagnosed with testis cancer between the age of 20 and 30 can now be cured. And in countries with good screening programmes in place, we record a similar share for breast cancer”.
Figures are unfortunately very different for pancreatic cancer. With 5-year mortality rates around 95%, it is one of its deadliest forms. And this is also why Ramón Martínez Máñez and his team work intensively to develop a pioneering nanotechnology-based treatment, which might revolutionise future cancer therapies. Professor at the Chemistry department of the Universitat Politècnica de València and scientific director of CIBER-BBN, within the European Project Ulises, he is in charge of preparing “lipid nanoparticles”, similar to those that have been used for the Covid-19 vaccines. The aim is to “reprogram” cancer cells for them to be detected and rejected as incompatible by the immune system. But for this to happen, they first have to deliver DNA into the cell. “The problem is that DNA, to enter the cancer cells, needs some kind of carrier. The idea is, therefore, to introduce it into the nanoparticles, and use them to deliver it to the cells”, he explains. Preliminary data are encouraging and in the next months, this innovative approach will be tested on humanized mice. “The success in the fight against cancer depends on many variables. Our treatment alone will therefore not eradicate it, but if proven effective, it could potentially be applied to other forms of cancer”.
New therapies, like the one Ramón Martínez Máñez is working on, take a long time before becoming accessible to patients. However, in the long run, their effects are immense. “In Italy, we have more than 3.7 million people who have been diagnosed with cancer and are in different stages of the disease. And of those, about 1 million are considered cured”, says Elisabetta Iannelli, General Secretary of FAVO, the Italian Federation of Volunteer-Based Cancer Organizations.
A cancer survivor herself, she has devoted her entire career as a lawyer to fighting for the rights of cancer patients. “In the early 2000s, it was considered visionary to talk about their return to active life. But the problems related to discrimination already existed”, she explains. This is why France, in 2016, was the first European country to adopt a law on the so-called “Right to be forgotten” (RTBF): the right of cancer survivors not to be discriminated against in light of their medical history, especially concerning access to loans and financial products. “No insurance company has faced financial problems or has gone bankrupt since”, says Ms. Meunier. “If all countries mimicked what France did, we could at least get a quick fix for the financial discrimination”.
Belgium, Portugal, Spain and Romania are among the five European countries that have since followed France’s example. The last one was Italy, just in the past days. Here, the text, which was unanimously approved in both the houses of the Parliament, pushed the boundaries of the ‘Right to be forgotten’ even further: “The Italian law focuses not only on insurance and financial matters, but has a broader scope and also considers other types of discrimination, such as in adoptive parenting or in the workplace”, explains Iannelli. But the situation across the EU is far from being uniform. The European Commission is now working on a “Code of conduct” and back in 2022, the European Parliament passed a resolution advocating for the ‘Right to be forgotten’ in all Member States. But some countries have been refusing to comply, arguing that fair access to financial products is already covered in their general legislation. “Brussels has done well so far, but also thanks to strong advocacy action from patient associations. Without their efforts, we would have neither recognised the issue nor the ‘Right to be Forgotten’ in the European Cancer Plan”, adds Iannelli.
“Simply formalising the concept of recovery already puts in black and white that cancer can be cured”, she says. “For this reason alone, the Italian law will have a significant ripple effect. However, we are aware that by itself it will not be enough. It is only one of many pieces of the puzzle that can help ensure that clinical healing is matched by social healing”.
“It is first and foremost the paradigm cancer equals death sentence that we must revolutionise”, Marziali confirms. “Science is doing it through research, but it is up to us to change the social perception”.
Like her, many activists and professionals invoke the need to break down this outdated equation. “This stigma is the basis of all discrimination. The battle for the ‘Right to Be Forgotten’ is especially important because of the cultural, even before the normative, change it represents”, concludes Iannelli. And this is exactly what Marziali calls for with her commitment and her theatre play: “Even if cancer is behind us, we are still perceived as broken, vulnerable, as people who have nothing more to offer to our society. But no, we are not half people; we’re whole individuals with all our dignity intact”.
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