Around 8,000 suffer from Multiple Sclerosis in Portugal and they’re not getting the medication they need.
Who says this is the Portuguese Multiple Sclerosis Society (SPEM) which accuses INFARMED, the medicine authority, of dragging its heels when it comes to approving new medication.
“The medicines arrive at INFARMED and get blocked,” Manuela Neves, secretary general of SPEM, told journalists.
“There are two substances that are not on the market: Fampridina, which improves patients’ walking but which has been held up by INFARMED for almost two years, and another substance which has the commercial name of Tecfidera.”
This latter substance is designed for the treatment of adults with relapsing forms of the chronic inflammatory disease that affects sufferers’ central nervous systems leaving many unable to carry out the simplest of tasks on their own. It was approved by the FDA in 2013 and has since been used widely by doctors treating multiple sclerosis patients.
But here in Portugal it is still far from being used in the first line of attack.
Contacted by Correio da Manhã newspaper, INFARMED said the evaluation of Tecfidera has only just started – the inference being it may take some time.
As for ‘fampridina’, “evaluation of the medication Fampyra is in the final phase”, confirmed the medicine authority, adding that a decision should be made soon.
Nonetheless, INFARMED stressed that doctors wishing to use medication under evaluation can put in requests which will then be decided upon individually, not usually taking more than a week.
The response, in theory, sounds good and fair – but Manuela Neves told the newspaper that it is simply not true.
“Patients continue without access to the medication,” she stressed. “The pharmaceutical commission of Hospital dos Capuchos ruled against such a request by a doctor on the basis that the medication had still not been approved by INFARMED”.
Even worse, Neves revealed that one sufferer, aged 36, has been waiting three years for a special consultation in Lisbon after being given “just two minutes” with a doctor in 2011.
