Disponible en / Available in:
Español
The Cystic Fibrosis Spanish Federation and its associated members demand urgent financing of the medicines that stop this genetic disease.
From September 2018 to September 2019 the number of cases of people with Cystic Fibrosis has increased by 10% in the Balearic Islands, an increase well above the annual average. On the occasion of the celebration of the World Day of this disease, the Cystic Fibrosis Association of the Balearics and the Respiralia Foundation, together with the Cystic Fibrosis Spanish Federation, demand the urgent financing of the necessary medicines to stop this disease.
This Sunday marks the World Cystic Fibrosis Day, one of the most frequent serious genetic diseases, of which an incidence in our country is estimated around one in every 5,000 births (one in every 6,400 births in the Balearic Islands, resulting in average of 1.5 people / year diagnosed with the heel test in our community).
It is a chronic and degenerative disease, of genetic origin, that affects different organs, especially lungs and pancreas. In recent years much progress has been made in the knowledge and treatment of the disease, but, despite that, it remains a pathology without cure.
“The Respiralia Foundation and the Cystic Fibrosis Association of the Balearics have gone from treating 64 people with Cystic Fibrosis to 70 in a year,” says Carlos Pons, managing director of these entities.
With the celebration of World CF Day it is intended to shed light on the global situation regarding the care of the disease and help in the development of minimum standards of treatment. This includes the availability of the necessary medication, equipment and professionals specialized in CF, as well as the recognition and creation of Reference Units specialized in the disease.
The CF Association of the Balearics and the Respiralia Foundation, together with the Spanish Federation and the International Association, claim the need for access to the latest treatments of the disease for all those who need them.
It is the case of Orkambi and Symkevi. These medicines are approved by the European Medicines Agency (EMA) and by the Spanish Agency for Medicines and Health Products (AEMPS), but in our country they still cannot reach people with Cystic Fibrosis because the Ministry of Health and the Vertex laboratory Pharmaceuticals have not yet reached an agreement regarding its price.
A year ago, hundreds of people with CF, family members and relatives, claimed an urgent financing agreement for these drugs in front of the Ministry of Health and the Vertex laboratory facilities. Little has changed since then, since when it seems that one step has been taken in the negotiation, two steps are taken backwards. It is a continuous tug of war on both sides, which people with Cystic Fibrosis are suffering directly, since the disease continues to progress and the physical deterioration produced during all this time cannot be recovered.
In the last year, representatives of the Federation and the Spanish Society of Cystic Fibrosis have held numerous meetings with the General Directorate of Pharmacy of the Ministry of Health, with the Spanish Medicines Agency and with the Vertex Pharmaceutical Laboratory in order to find a solution. The Federation also transferred this situation to the Ombudsman and the Senate. The latter approved, with the unanimous support of all groups, the demands made, but today there is still no access to the latest generation medicines.
This is why the CF Association of the Balearics and the Respiralia Foundation, together with the Spanish Federation, want to show their utmost disagreement about how negotiations are taking place on such an important issue as this one, in which there are lives in game. These entities maintain that the group will return to demonstrate shortly, in view of the blockade that this situation suffers. This has been expressed by Blanca Ruiz, president of the Federation: “We will not continue waiting, we will go out again and we will not stop until we get access to these treatments. The Interministerial Commission for Drug Prices has agreed on a financing proposal that the Vertex laboratory does not accept and will again submit claims at the next meeting on September 30. We ask Vertex to present an economic proposal that can be assumed by the Ministry of Health in order to unlock this situation and not lose any more life. ”
