Case of the twins: children were discharged and no longer have mandatory assessments in Portugal

The twins with spinal muscular atrophy treated at Santa Maria Hospital were discharged after the last mandatory medical evaluation, in May, and follow-up will continue in Brazil, said the family’s lawyer.

In response to questions sent by the Lusa agency, the children’s mother’s lawyer said that the last consultation took place ‘online’, on May 13th, with all motor parameters being assessed, as well as the blood tests that had been requested

“It was the last mandatory evaluation of the agreement between the State and the pharmaceutical company, with the doctors discharged (…) at the end of the consultation”, replied the lawyer, adding: “The treatment will continue in Brazil until the family believes they are able to return to their home in Portugal”.

Regarding the effects of the medicine, the lawyer, who will be heard in the parliamentary commission of inquiry, in the Assembly of the Republic, said that “it has fully met what the studies promised”, considering that treatment with the medicine Zolgensma, administered at Santa Maria Hospital, “was fundamental for them to have a dignified life today and especially without the need to use mechanical ventilation to breathe”.

The lawyer considers the theory of the “alleged wedge” to be inexplicable, explaining that the twins had an appointment scheduled at the Hospital dos Lusíadas for December 6, 2019, which would refer them to the National Health Service and said he was surprised that the information about the appointment at Hospital Santa Maria — scheduled for the day before — arrived via telephone, “since all communication from Santa Maria is done via SMS or e-mail”.

The investigation into this case has already led to the establishment of defendants, including the former Secretary of State for Health António Lacerda Sales.

At issue is the hospital treatment of the two twin children living in Brazil, who acquired Portuguese nationality and received in Portugal, in 2020, the drug Zolgensma for the treatment of spinal muscular atrophy.

The case was publicized by TVI last November and is still being investigated by the Attorney General’s Office (PGR).

The General Inspection of Health Activities (IGAS) also investigated the case, concluding that access to the neuropediatrics consultation for the twins treated with the million-euro medicine was illegal.

In the conclusions of the inspection report, released in April, IGAS states that “the legality requirements were not met in the access of the two children to the neuropediatric consultation” since the appointment – carried out through the State Department of Health – did not comply with the ordinance that regulates users’ access to the National Health Service (SNS).

On the contrary, Lacerda Sales criticizes IGAS for having given less value to his word than to that of his personal secretary, who contacted Santa Maria Hospital to schedule the twins’ appointment.

Lacerda Sales disputes several points in the document and says that, contrary to what was stated by his personal secretary, he never requested any appointment to be scheduled.

Remember that his personal secretary had worked at the Centro Hospitalar Universitário Lisboa Norte (CHULN) — which belonged to the Hospital de Santa Maria — and, therefore, could have already been aware of the geria case. meas, whose requests for help began in September 2019.


Francesco Giganti

Journalist, social media, blogger and pop culture obsessive in newshubpro

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