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The president of AELMHU has explained the problems that occur between the approval of medicines in Europe, its financing and the time it takes to get to Spain
Josep María Espinalt was accompanied by Alba Ancochea and Fidela Mirón, director and vice president of FEDER, respectively, at the round table held on the second day of the Tenth International Congress of Rare Diseases held at the UCAM.
The Temple of the Hieronymites, headquarters of the Catholic University, has hosted this morning the celebration of the second day of the congress organized jointly with the Association of Rare Diseases 'D'genes'.
The president of AELMHU (Spanish Association of Orphan and Ultra Orphan Drug Laboratories), Josep María Espinalt, has stressed the main problem when marketing a medicine in our country: "At a European level the medicine is approved, but it really does not arrive to Spain until its funding is approved, we need real equity between some diseases and others. "
Espinalt has also highlighted that "the decrease of access to the market for orphan drugs - medicines that are not developed by the pharmaceutical industry due to lack of funding when they are destined for a small group of people - may cause the pharmaceutical companies themselves to lose interest in the market. Spanish market due to the high price of financing them ".
As a purpose of AELMHU, he clarified that "it is our
commitment to contribute to the knowledge of the therapeutic and social value of orphan drugs ".
On the other hand, Alba Ancochea, director of FEDER, affirmed that "only 5% of the EERR are treated".
Finally, the vice president of FEDER, Fidela Mirón, has assured that "it is very important to know what we suffer because 30% of patients die before a diagnosis".
The X International Congress of Rare Diseases will close this afternoon at the Jerónimos Monastery.
Source: UCAM
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