Industry Calls for “Priority” for Orphan Price Fixing in Spain

Companies specialised in the research and manufacture of orphan drugs are clear that there is still a long way to go in Spain to generate an environment that favours all agents in relation to rare diseases. Josep María Espinalt, president of the Spanish Association of Orphan Drugs and Ultrahuérfanos (Aelmhu) said that, unlike what happens in other countries, “no priority is given to the decision on price and funding for orphan drugs,” which, he said, “slows down access of these drugs to patients.”

To this is added, he said, the lack of equity that exists between autonomous communities, motivated mainly by the revaluations that each administration makes of medicines that have already been subjected to price fixing by the Ministry of Health. In this sense, Espinalt recalled that there are already mechanisms to end these revaluations, such as Reports of Therapeutic Positioning (IPT). Another measure that should be adopted, in his view, to end inequities, is to provide referral centres with specific funds for these drugs. “If specific funds for rare diseases are established for referral centres or for hospitals, they will have to reduce their budget considerably for treating a patient.”

On the other hand, the president of Aelmhu called for the establishment of “a transparent and stable environment that encourages companies and fosters research and development of new orphan drugs.”

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Published 17. February 2017 in News Spain