“These diseases”, eating disorders, “are becoming incurable not because medicine or science says so, but because politics decrees it”. It is clear that Stefano Tavilla, among the founders of the Fiocchetto Lilla Foundation and president of the 'Mi Nutro di Vita' association, has decided to commit himself to the rights of people suffering from these pathologies after the death of his daughter Giulia, 17 years old , for bulimia. “There is a political plan”, he fears, which has led to the elimination, decreed by the last Maneuver, of the Fund for combating nutrition and eating disorders.
“The Fund – Tavilla reminds Adnkronos Salute – was born because at the end of 2021 an amendment was approved in the Budget law which gave these diseases autonomy within the LEAs, Essential Levels of Assistance. In the meantime , this Fund was supposed to ferry us towards the new structure for the time needed to complete the revision of the LEAs. It was a ministerial fund of 25 million in 2 years for all the Regions, who could have accessed it by presenting the projects. What do we want now “We want the Lea. This law has been on hold for 2 years, the implementing decree is missing. If these diseases were recognized in the Lea, they would have funds dedicated in a uniform manner for all the Regions”. Of course, the cancellation of the Fund has an implication: “It would be the interruption of all those services that were financed in the Regions, especially where there was nothing, through this instrument”, he suggests.
But the problem for the associations is another. The issue of the Lea is “fundamental to give a stable, planning perspective, so that these diseases have their own resources throughout the national territory. An implementing decree for a state law could be made at any time. Instead – says Tavilla – I fear it's a choice. In September two members of this majority made a bill for the establishment of a permanent fund of 20 million per year for eating disorders. Because, if there is a law on LEAs to be implemented “We don't want to put a hat on the patients to obtain consensus. A fund would not be useful if the LEAs were there. But in October 2023 there was a question to the Undersecretary of Health Marcello Gemmato, who replied that the The World Health Organization considers these disorders to be psychiatric diseases, so they should not be separated from mental health within the LEA.”
Tavilla objects: “Perhaps it is not clear that these are multidisciplinary pathologies, they need mental care, but also care that concerns the body.” And he expresses doubts, shared with families and people struggling with the disease: “Just go and look at the latest reports on mental health, in which eating disorders have never been mentioned. Furthermore, those same reports say, for example , that the most affected age group for mental health users is from 35 to 55. We know that there are more than 2 million young people under 25 who suffer from these diseases. And also those who die” .
After Covid, he also observes, “the age of approach to disorders has dropped a lot, unfortunately there are also many children. And do you know how many 14-year-old children with these problems are hospitalized in ordinary psychiatry departments because they can no longer enter pediatric hospital? Do you know what it means for them to spend even just 15 days in a psychiatry department in a hospital? It means scarring them for life”, urges Tavilla.
“We – he insists – ask that the law on LEAs be implemented and that from that law a network of services be built in every region. Today there are situations in which there is nothing for these disorders and there is a lot of health tourism, families forced to travel kilometers to be able to care for their loved ones. I'll give you an example: think of a family with two children, one sick and one not, who has to move from the South to Lombardy. The mother perhaps follows her daughter who is busy with care, the father stays with his brother more than a thousand km away. It would be very different if these people had support at home.”
“Then another mistake is made – continues the father of the Fiocchetto Lilla Foundation – The needs are framed with the structure, which is the one that receives the patient in the most serious situation. But let's remember that these diseases are intercepted first and can have a first resolution. The reality, however, is far from it. Today in Milan, the 'economic capital' of this country, a user from Lombardy has to wait 6 to 8 months to make a first visit. In Rome, the capital of Italy, a user Roman waits from 9 to 12 months. It should be considered that right from the start we notice the disease when it is advanced. If we then have to wait that period of time, we access the service when the patient is already serious”.
And now, if the funds are interrupted, “in addition to the lengthening of the already very long waiting lists – Tavilla points out – we will see a contraction of the treatment, the recovery will be calibrated downwards, we will have to take increasingly shorter paths and we will be content to reach only a remission of symptoms or a certain level of weight.But this is not recovery, it is a condition in which a patient can have a relapse, with all that this entails for the person, for the family and for the National Health Service. Finally, let's not hide the fact that this is a gender disease. Males are increasing, it's true, but the majority are women. And there are all those women over 35 who are no longer treated. What do we do with these people? They are already abandoned”.
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