“Give us the weapons to fight” HCFA-TEAM 31 Μαρτίου, 2020

“Give us the weapons to fight”

Under the threat of the global pandemic of COVID-19, patients with Cystic Fibrosis are among the most vulnerable groups at immediate risk. Patients with CF who are in critical condition, with low respiratory function, it is likely that they won’t be able to deal with such a powerful virus.

 

 

On November 19, 2019, the Honorary President of Hellenic Cystic Fibrosis Association and award-winning CF Patient Advocate 2019 from CF Europe, refused the lung transplant that he had been waiting for 2 years. His goal was to claim the revolutionary drug “Trikafta” for all patients with CF. Two days later, the Greek Minister of Health called Vertex to launch the negotiations for the drug reimbursement.

 

 

COVID-19 & CYSTIC FIBROSIS
“Give us the weapons to fight”

Under the threat of the global pandemic of COVID-19, patients with Cystic Fibrosis are among the most vulnerable groups at immediate risk. Patients with CF who are in critical condition, with low respiratory function, it is likely that they won’t be able to deal with such a powerful virus.

In Greece, in the last 60 days, 2 young Cystic Fibrosis patients were lost, 18 and 35 years old, before Coronavirus appeared in our country. These patients could have early access to the revolutionary treatment ‘Trikafta’ (the trade name in America). This is the new triple combination of the pharmaceuticals company Vertex, the approval of which has been received in October 2019 from the Food & Drug Administration (FDA). The drug has spectacular results and concerns 90% of patients with CF worldwide.

Until its approval in Europe from the European Medicines Agency (EMA) that is expected to be given in the fall of 2020, an early access program to the drug could be available for some patients in the framework of ‘compassionate use’. It is an ethical practice that a medicine is provided to patients who are in critical condition before its authorization, unless there is other treatment.

Early access to the triple combination (Trikafta) has already been granted to patients from several European countries since autumn 2019 and continues until today. Unfortunately in Greece our CF patients do not have an early access to “Trikafta”, although our country reimburses for all 3 previous combinations of the same company (Kalydeco, Orkambi, Symkevi), while the negotiations are in progress. It is of paramount importance for the survival of patients with CF- especially now that we are under the serious threat of Coronavirus – to be given to as many patients as possible, who are in critical condition or in low respiratory function. In every country, without discrimination.

A Pharmaceutical company that states that its core value is the patients with Cystic Fibrosis, which invested many years in research and now that made a historic medical breakthrough, giving hope to patients, cannot let them die without treatment. It must cooperate directly with the local authorities of each State for granting early access, until the approval from EMA is be given. Following the approval from EMA, the states of Europe should, in their turn, reimburse it for all the patients.

A few days ago, on March 26, 2020, a 21-year-old CF patient from United Kingdom beat the Coronavirus despite his low respiratory function (25-30%). It looks like a miracle! However, an important detail is that since January 2020 he has been receiving “Symkevi”. This is one of the 3 substances included in triple combination, released by Vertex and aims to the cause of CF. A relevant campaign launched in England for Daniel to take the drug on time.

Worldwide 90% of patients with CF need the new Triple combination immediately.

Give us the weapons to fight!

 

 

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