The Panhellenic Cystic Fibrosis Association participated in the public online consultation of the Ministry of Health on the draft law: “Establishment of a Drug Innovation Fund – Patient access to new medicines and treatments – Improvement of health services and other provisions”.
As part of the consultation, the Association provided detailed comments and suggestions on the access of patients with Cystic Fibrosis to innovative therapies, including CFTR modulator therapies and future therapies currently in clinical trials or development, as well as the mechanisms of access through the SHP and the IFET.
Cystic fibrosis is a rare, chronic and fatal genetic disease, which starts at birth. Until a few decades ago, many children with Cystic Fibrosis did not make it to adulthood. In recent years, thanks to advances in science and the development of innovative treatments, such as CFTR modulators that “freeze” the disease, the course of the disease has changed substantially, allowing many children with Cystic Fibrosis to grow up with a longer life expectancy and a better quality of life in their daily lives.
The Association’s comments focused on, among other things:
- ensuring continuity of treatment for patients already receiving treatment,
- maintaining and strengthening early access mechanisms,
- the need for specific forecasts forrare and life-threatening diseases,
- and the importance of early access for patients to new innovative treatments.
The comments relate in particular to issues concerning access to treatments that have not yet been included in the normal reimbursement procedure in Greece and are provided through exceptional access procedures through the IFSET.
Read in detail the interventions of the Association HERE and HERE.
The Association continues to closely monitor the development and implementation of the new framework, in close cooperation with the competent bodies, in order to ensure timely and equitable access to life-saving treatments for Cystic Fibrosis patients today and in the future.
