Mar 05, 2026
3 min read
2026 was supposed to be a turning point with the incorporation of LEA, but the road between Asrem's corridors and union workplaces is still blocked.The voices of the patients: "We are not invisible, we are just tired of shouting."Di Lucente: "They will not be alone"
|The Invisible Army: 10,000 Fibromyalgia Prisoners Between Political Promise and Real Pain
2026 was supposed to be a turning point for inclusion of LEAs, but roadblocks remain between Asrem roads and Regional Council desks.Voice of the sick: "We are not invisible, we are just tired of shouting."Di Lucente: "They will not be alone"
Imagine waking up every morning as if you ran a marathon in your sleep.Feeling the weight of invisible armor that slows down every movement and the mental "fog" that makes even remembering a shopping list difficult.This is the daily reality of about 10,000 people in Molise (fibromyalgia affects on average 2-3% of the Italian population, and since Molise has about 290,000 inhabitants, it is estimated that the affected people in the region are between 6,000 and 10,000), a community made up of women with the highest proportion of family life at 9% of their family life.The Molise region has started the process of establishing a regional fibromyalgia registry and identifying a reference center dedicated to accurate case tracking in the region.
The story of 54-year-old Maria (not a pseudonym) de Montenero de Bisaccia is common to many: "For years I went to orthopedists and neurologists. They told me that I was just stressed or that I needed more rest. When I finally gave my pain a name - fibromyalgia - I cried with relief: I wasn't crazy, I was sick."Cases like the "Clinic" highlight the phenomenon of Maria's "nomadism".
In Molise, thanks to the determination of associations such as CFU-Italia and AISF ODV, efforts are being made to reduce these waiting times and bring diagnosis closer to citizens.The most affected group is those aged 30 to 55.This is the age when pathology hurts the most, affecting not only health but also work.“There are days when even sitting in front of the TV is torture,” María always says.Molise's challenge in 2026 is exactly this: integrating clinical recognition with certain workforce protections, such as remote working or flexible working hours.
At the moment, in Molise there is still no "magic hole" that will solve the problem, but there is a network that is getting tighter and tighter every day.The region has established active centers for the treatment of chronic pain and psychological support, and the University of Molise remains a beacon of rheumatological diagnostics.Meanwhile, more and more patients are benefiting from protocols that combine pharmacology (eg, new sublingual muscle relaxants) with gentle physical and mental activity.“I, this is a battle not for the privileges that we have, but for dignity,” explains Maria.In a small region like Molise, solidarity between patients has become the first form of treatment, waiting for the bureaucracy to complete its (long) journey.
A break in the law: the Register and the LEA
2026 is the turning point.For the most severe cases of fibromyalgia that reach the basic treatment level (LEA), Molise needs to speed up the regional registry process.Without certain data, it is impossible to allocate funds.The register allows Asrem to know exactly how many patients there are in Thermolys, Venafros or Agnones, which ensures that they are exempted from specialist visit tickets.
"In 2022, I presented to Maliza a regional legislative proposal containing "Provisions for people suffering from fibromyalgia", the Andreas Council, to clearly recognize this disease for the first time, although it is not yet included in the national list of chronic diseases subject to exemption, which is really very disabling and has a significant impact on the quality of life of those who suffer from it", Lucente.
The bill presented proposes to "establish a regional scientific committee with resources in the Molise region and create a regional registry to collect clinical data of patients affected by the disease in Asrem to monitor epidemiological trends and identify problems and consequences related to the disease."
Unfortunately, as is known, the proposal has not completed its process."I am currently working on revising the text to restore it, taking into account the very important words that appear in the situation we are in. The national law currently does not fully understand fibromyalgia as a pathology for the purposes of resolution, which represents the objective goal".
Regarding Molise, the situation is more complicated: the regional health commissioner limits the possibilities for direct interventions in the health sector. “My colleagues and I are studying alternative and practical ways, such as the possibility of giving access to the region's contributions to third sector associations or entities that legally deal with fibromyalgia, in order to find objectives aimed at concrete support for patients and their families.”in real and timely answers," concluded Di Lucente.
The challenge for the regional government now is to move from "requests for goals" to facts, to ensure that the allocated funds do not remain in the folds of the health budget, often burdened by the recovery plan."We are not invisible, we are tired of shouting just for an aspirin or a visit to be reimbursed. Now the group will go to the one who decides: we no longer have time for promises", concludes Maria.
There are three things on the table: PDTA (Creating a Diagnostic Therapeutic Assistance Pathway): Politics must approve a protocol that establishes who does what.Without this act of Asrem.The patient will continue to bounce between one private specialist and another, paying everything out of his own pocket.funding for regional registration;"Agile Work" assures certified fibromyalgia patients teleportation that prevents the physical strain of daily commutes during the acute stages of the disease.
