Is anyone suffering from thalassemia entitled to civil invalidity? What about early retirement? What kind of tax breaks can you benefit from? What are the requirements for issuing or renewing a driving licence? And what kind of compensation is he entitled to in the event of damage suffered from blood transfusions? These are some of the (many) questions collected in the guide “All the rights of thalassaemics”: a real manual to extricate oneself from the regulations on the rights and legal protections concerning people suffering from rare pathologies. Just like thalassemia, the hereditary blood disease – better known as Mediterranean anemia – which in Italy has over 7,000 patients and more than 3 million healthy carriers. The guide can be downloaded free of charge and was created by the Legal Desk of the Rare Disease Observatory, with the collaboration of the Piera Cutino Onlus Research Association, the contribution of the National Blood Center, the sponsorship of the Italian Foundation “Leonardo Giambrone” and United Onlus, Federation of patient associations with thalassemia and sickle cell disease.
The idea of developing a guide of this type was born from the need of patients and caregivers to have clear information available on when and how to take advantage of the facilitations provided by the regulations. “In recent years, during conferences and meetings between thalassemia patient associations, we have heard different experiences on how to access legal benefits depending on the region of residence or even just the ASL of affiliation – explains Giuseppe Cutino, founder of the Association for research Piera Cutino Onlus. Experiences that demonstrate how those who live with this disease often receive non-homogeneous responses in the face of completely similar pathological conditions, especially when it comes to economic benefits linked to the percentage of civil disability. But that’s not all: the requested information is many and affects different topics.
Here is a summary of what they are about:
-Civil invalidity
People with thalassemia are entitled to a fixed percentage of civil disability (90%) attributed on the basis of the diagnosis. Based on health conditions, the possibility of attributing further percentages of disability (100% or 100% with accompaniment) is also evaluated. The same right is also recognized for underage patients.
– The right to Law 104
The INPS guidelines indicate that patients with thalassemia major or sickle cell disease, as well as thalasso-sickle cell disease and thalassemia intermedia treated with transfusion or hydroxyurea, are recognized as seriously disabled (article 3 paragraph 3 of the Law 104/92).
– The exemption from the ticket
The legislation provides for the right to obtain the exemption code RDG010 (Hereditary Anemias) valid for the specific services.
– The disabled sign for the car
You are entitled to it if an effective impaired or significantly reduced ability to walk is ascertained.
– The right to free prenatal examinations for healthy carrier couples
When the fetus presents a risk of disease or malformation higher than the average of the population, prenatal investigations, such as CVS and amniocentesis, can always be carried out under an exemption regime. But for couples exposed to the risk of having a child affected by thalassemia, a more recent prenatal diagnosis technique is also available, celocentesis, which makes it possible to know the state of health of the fetus from the second month of gestation.
– The right to special tax breaks
As holders of Law 104 or of a percentage of civil disability, special tax concessions are also provided for those suffering from thalassemia, and concern, just to name a few, domestic services and personal and family assistance, the purchase of cars with specific characteristics, interventions to eliminate architectural barriers, or even the purchase of medical aids when they are not provided free of charge.
Thalassemia, patients sound the alarm: there is a shortage of blood
by Elisa Manacorda
Not just regulations
These as well as other topics, such as the right to early retirement or the psychophysical suitability for the issuance or renewal of a driving licence, can be explored directly by consulting the guide. Which not only addresses regulations, but also some of the most critical issues felt by thalassemia patients and centers throughout Italy, indicating data, projects and solutions under study. Among these, the sometimes chronic shortage of blood, the disparities in access to treatment and in the quality of assistance on the national territory, and the need for a generational turnover of specialists.