2023-08-04 20:11:41
by Laura Cuppini and Vera Martinella
The text approved by the Chamber recognizes the same rights as the rest of the population for those who have overcome cancer. Iannelli (Favo): «Fundamental passage, first of all cultural, for the entire community»
Giulia Panizza was five months old when she was diagnosed with neuroblastoma, the most common solid tumor in early childhood that develops from immature nerve cells and which, in the most aggressive forms, is associated with a five-year survival after diagnosis of 35 %. Today Giulia is 42 years old, works, got married and had a son. You are among those who will benefit from the future law on cancer oblivion (approved unanimously by the Chamber, it will now have to be examined by the Senate), which provides – ten years after the last manifestation of the disease or the last treatment – the full recognition of rights for those who are effectively “healed”. «When I fell ill, in 1981, the prospect of recovery almost did not exist, the word “tumor” was not even mentioned – says Giulia, who is a councilor of the Federation of Parents and Healed Pediatric Oncohematology Associations (Fiagop) Onlus -. The world was not prepared for me to survive cancer. I continued the treatments up to two years of age, but then I had to deal with physical problems (posture and walking) which were a consequence of the treatments and various surgical interventions. Despite this, neither my family nor I mentioned the tumor, unless there was an actual need. It just wasn’t talked about. Today a state law (I hope it will soon be so) considers us “cured”: it is a total paradigm shift compared to what happened when I was a child”.
“I was born after my son”
The aim of the bill is “to exclude any form of prejudice or unequal treatment” towards “people recovered from oncological pathologies” with regard to “banking, financial and insurance contracts stipulated after the date of entry into force of this law, the procedures in progress for national and international adoption, as well as the competitions». “The request for information relating to the state of health of the contracting natural person concerning oncological pathologies from which the same was previously affected and whose active treatment has ended, without episodes of recurrence, for more than ten years from the date of the request. This period is reduced by half (5 years, ed) in the event that the pathology arose before the age of twenty-one». Marco Dell’Acqua is 57 years old. When he was 38, and had been married for a year, his myeloma diagnosis shook his life and that of his wife, Ida. “The doctors told me that if we wanted to have a child there were two options: conceive it right away, before I started therapy, or freeze the sperm. They also made me understand that I had to prepare myself for the eventuality of not seeing him grow up». Things went differently and Marco recounted them in the book «I was born after my son». «Ida immediately became pregnant and two years after the diagnosis a donor was found for the bone marrow transplant, who saved my life. At the time my son was 6 months old, now he is 18 years old ». Today, myeloma is no longer treated with a donor transplant (a high-risk operation), but with an autotransplant, followed by maintenance therapy based on new drugs.
Publication of exams on the Net
Marco, however, unlike Giulia, is not “healed”. «For myeloma (a blood cancer that recently also affected the musician Giovanni Allevi) there is no “official” date of recovery. In fact Marco, although 17 years have passed since the bone marrow transplant, constantly undergoes checks, even if he is fine. “A clinically recovered person must have the same rights as the rest of the population – he says, commenting on the bill approved by the Chamber -. However, there is also a “cultural” problem. Some patients, who perhaps do not receive sufficiently comprehensive (or reassuring) answers from doctors, post their tests in various groups on the internet asking for opinions from people who have the same pathology. In this way the right to be forgotten is “boycotted” by the patients themselves, because anyone can do a search on the Net and find information about their present or past health. Doctors and patient organizations should strongly state that this attitude is wrong.
Work and the sense of fragility
Marco didn’t have any major problems with work. «I lived and still live in Milan and therefore, while I was being treated at the Cancer Institute under the guidance of Vittorio Montefusco (today head of Hematology at the San Carlo Hospital), one of the leading myeloma experts, I was able to work between one hospitalization and another . Other patients are less fortunate and have to change cities to follow the therapies, thus risking running out of sick days and having to ask for unpaid leave. In addition to perhaps paying a rent ». In addition to the professional and financial aspects, the so-called “long-term survivors” have to deal with the psychological one. «The tumor leaves you, even after some time, a sense of fragility, of insecurity – explains Ida, Marco’s wife -, due to the fact that you have invested all your energies and resources in the fight to defeat the disease. Former patients have to live with fatigue, a profound sense of tiredness ». “Psychological support is very important for all patients and former patients – adds Marco -, especially those who do not have cultural tools or who for various reasons are unable to have even a “human” dialogue with their doctor”.
There may still be an “after”
For Giulia, the “long survival” (which began immediately after her birth) is made up of checkups (at the Gaslini Hospital in Genoa, where she was treated as a child), but also of physical problems: “I recovered from the oncological disease, but the movement disorders for which I will have to do physiotherapy for life. The important thing is to know that you can get out of a tumor, there can still be an aftermath, albeit with some limitations. This is why the bill on cancer oblivion is very important. For example, my husband and I took out a mortgage, but I couldn’t have done it alone. And I was denied life insurance because one of the parameters requested was that of never having had an oncological disease. Furthermore, I would have had great difficulty in adopting or fostering a child: fortunately, despite the treatments that can cause infertility, I became pregnant naturally. But the world is changing. Paralympic athletes demonstrate this, for example: we all know that even with a disability incredible things can be done. A person who has had a tumor has gone through hell: in English we speak of survivors (as if the tumor were a battle), while in Italian the word “long survivors” is really ugly, it should be changed. For example, from my first two years of life I remember the sounds of the machinery and some typical hospital smells: smelling them today makes me feel unwell».
Mortgages and financing denied
Elisabetta Iannelli is a lawyer, secretary general of the Italian federation of voluntary associations in oncology (Favo) and vice president of Aimac (Italian association of cancer patients, relatives and friends). If the bill on cancer oblivion has arrived in Parliament it is largely thanks to you and the work you have done in recent years together with patient associations. “After an oncological diagnosis a person redesigns her life, finding many obstacles in her path – she underlines -. Now healing is recognized by a law, it is almost a revolution. I fell ill 30 years ago, I had a fourth stage metastatic tumor. I experienced some problems on my skin: I was able to open private health insurance, but only by accepting many limitations. Oncological pathology and everything that could be connected were excluded from the reimbursements. But, for example, cancer therapies are often cardiotoxic: if I had a heart problem, the insurance company could have claimed that it was related to cancer treatments, even if this was not proven. For example, insurance companies could provide higher premiums for former patients, as long as risk factors exist, and then gradually lower them as the “official” recovery approaches. About ten years ago the mortgage was granted to my husband, not to me (even though I had applied). But I know of former patients who have also been denied more limited financing, for example for the purchase of a car ».
Many cancer patients recover
The first effect of the law (if it is approved by the Senate) will be seen precisely on the forms for requesting mortgages, loans and insurance coverage. If ten years have passed since the end of the treatments (five for those under 21), there will be no obligation to mention the past oncological pathology. «I still happen to see online forms in which it is written that those who have had cancer cannot apply, without any time indication. In the future this will no longer be possible – clarifies Iannelli -. I spoke about oncological oblivion for the first time in 2002 on the occasion of a conference in the Senate: after twenty years of commitment, seeing that the Chamber unanimously approved the bill fills me with satisfaction and emotion. Those who have returned to having a life expectancy equal to that of the healthy population will no longer be marked with the “scarlet letter”. Then the implementing decrees, which will be drawn up in collaboration with the patient associations (Favo in primis), will analytically indicate all the cases in which the ten-year term can be reduced. Let me give you an example: testicular cancer is typical of youth and usually has a rapid recovery. It doesn’t take ten years to define a patient as “cured”. We have worked a lot in recent years, together with patient associations, with a commitment that has been increasingly “pounding”. The first data on cancer survivors was made public about ten years ago, after an explicit request from us to Airtum (Italian Association of Cancer Registries): previously we only spoke of deaths or survival. Well, ten years ago, one in four cancer patients recovered. And the numbers are improving, thanks to the discovery of new therapies».
Labor protection and adoptions
The strong points of the bill on cancer oblivion are – in addition to the request for mortgages, loans and insurance coverage – job protection and the possibility of adopting a child. «As far as work is concerned, the future Italian law even takes a step forward compared to already existing European regulations and the European Commission is watching with interest what is happening in our country: entry into and job retention are protected, with active policies, not only for the healed but for anyone who has had cancer. In the field of adoption, the bill states that for former cancer patients who have been cured for at least ten years, the disease must not be mentioned. But, be careful: there is no legislative ban on adoption for those who have not recovered, or who live in a chronic condition awaiting recovery. As has happened so far, faced with the request for adoption by a cancer patient, the Juvenile Court will assess the situation on a case-by-case basis. The text of the law approved by the Chamber also has weaknesses, which relate to controls and sanctions: there is no control body in the event of non-compliance with the legislative provision and no sanctions are envisaged. However, this law establishes a fundamental step, first of all cultural, both for the person who has had cancer and for the entire community. We must clear the fact that cancer can be cured, as science has been saying for some time. Clinical healing must correspond to “social” healing. We haven’t reached the goal yet, but the road is the right one».
August 4, 2023 (change August 4, 2023 | 20:41)
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