The Spanish Federation of Cystic Fibrosis (FEFQ) has asked the Vertex laboratory to reach an "urgent agreement" with the Ministry of Health in the financing of medicines Orkambi and Symkevi so that those affected can be treated with these drugs.
On the occasion of the celebration on April 23 of the National Day of CF, the Federation, based in Valencia, has written an open letter to the laboratory in which he denounces "three years of despair, frustration, inequity and injustice for not being able to be treated with the best treatment available. "
The Federation explains in a statement that the negotiations between Vertex and the Ministry to reach a price agreement on both drugs "have not yet paid off."
"We do not understand how a company like yours, which has constantly searched for the molecule that can stop our deterioration, is not capable of unlocking this situation of despair for many people," the Federation said in the letter.
Vertex, the FEFQ points out, "has in its hand the opportunity to change the reality of children and adults with CF who are suffering irreversible damage to their health and to avoid a double lung transplant or even death."
It indicates that the Interministerial Commission for Drug Prices (CIPM), in its last meeting of March 18, authorized the financing of these medicines with conditions "not agreed with the laboratory, which leaves this authorization without real effects".
"These conditions are based on the pay-for-results model, which Vertex has already stated that it will not accept," says the FEFQ, which adds that after the presentation of allegations by the laboratory, the files of Orkambi and Symkevi "should return to to be discussed in the Price Commission of next April 25, something that we still do not know if it will happen ".
The authorization in the CIPM on March 18 was for indications of Orkambi for children from 6 to 11 years and Symkevi for over 12, and was a "step forward by the Ministry, which shows its willingness to reach an agreement of financing ".
"However, the Vertex laboratory does not accept financing conditions based on results, proposed by the Price Committee and assumable by our National Health System," adds the FEFQ.
Therefore, he asks the laboratory to "think not only about the business benefits that their products can bring, but at the historical moment in which they are participating, thanks to the development of drugs that for the first time treat the underlying cause of the disease and slow down the deterioration that it produces ".
The Federation has shown its discomfort after knowing, on March 27, that Vertex "had to discard 8,000 lots of Orkambi in the United Kingdom because they had exceeded their expiration date after more than three years waiting for an agreement on their price."