Patients with ALS and their families are tired of promises: first attended the endless revision the "new" Essential Levels of Assistance, collected over two years ago by the government, then the constant references, while the practice has now stopped for months on the table of the Minister of Economy.
They followed the Commission's work for years, last in time order the consultation of neuromuscular diseases, appointed by the Minister Fazio, has produced documents regularly set aside.
took to the streets, June 21, and were hastily dismissed by Secretary Letta, ertosi then to Presidio in favor of the disabled and the guarantee of a speedy approval of the LEA.
Finally, they saw a fall on deaf agenda presented by the Honourable Maria Antonietta Farina Coscioni, approvato dal Governo, che impegnava il Governo stesso ad emanare, entro il 30 settembre 2010, il DPCM sui LEA, termine da considerarsi perentorio, salvo che il Ministro Tremonti fosse intervenuto in Aula a riferire sulla mancata emanazione, chiarendone il motivo.
Anche se indignati, stanchi, delusi e molti addirittura alla disperazione, non hanno perso la voglia di lottare e comunicano di aver deciso quanto segue:
Il giorno 16 novembre 2010 dalle ore 10,30 noi, malati in carrozzina, anche con tracheostomia e PEG, saremo davanti al Ministero dell'Economia per farci carico di un PRESIDIO PERMANENTE sino a che il Ministro Tremonti non ci darà risposte esaustive. Prendiamo l’iniziativa, per noi e for millions of seriously ill, disabled and dependent, which can no longer wait for the right to health is respected and to a dignified life, enshrined in the Constitution.
consider urgent priority and the following measures:
- Financial coverage and approval of Essential Assistance Levels (LEA) and its tariff nomenclature aids.
- Financing of € 100 million for the care path proposed by the ministerial consultations of neuromuscular diseases, such funding should be reserved for family support for training and employment of family carers. The regions will contribute una pari quota.
- Finanziamento di 10 milioni di euro per ricerca di base e clinica da effettuarsi in 10 centri universitari italiani con metodologie ed obiettivi condivisi e sinergici.
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