PCP asks Infarmed board president to listen to twins’ case

The PCP wants to summon the President of the Board of Directors of Infarmed to Parliament, the only hearing it has requested as part of the commission of inquiry into the case of twins with spinal muscular atrophy being treated at the Santa Maria Hospital.

According to the request addressed to the chairman of the commission of inquiry into the case of the twins treated with the drug Zolgensma, Rui Paulo Souza (Chega), the communists only ask for a hearing with the president of the board of directors of Infarmed. , Rui Santos Ivo.

The party motivates this by “the need to investigate the facts related to the exclusive approval of the drug Zolgensma, the coordination of its price and reimbursement.”

In terms of documentation, the PCP also requires information about “requests for exclusive use authorization for Zolgensma,” “price/government contribution negotiations” for the drug, and “all requests for exclusive use authorization for all drugs in the past two years.” years.”

The Parliamentary Inquiry Committee will meet on Wednesday to discuss hearing and documentation requests submitted by the parties, appoint an alternate rapporteur, review and vote on draft regulations, review and vote on the schedule and establish a working methodology.

We are talking about the treatment in 2020 of two twins living in Brazil and who received Portuguese citizenship with the drug Zolgensma. The drug, which costs four million euros (two million euros per person), is designed to control the spread of spinal muscular atrophy, a neurodegenerative disease.

The case was published by TVI last November and is still being investigated by the Prosecutor General’s Office (PGR), with IGAS having already concluded that access to neuropediatric consultation for these children was unlawful.

Santa Maria Hospital’s internal audit also concluded that the state Department of Health’s first appointment at the hospital was the only exception to compliance in this case.