Parents of Portuguese-Brazilian twins only want online consultations at Santa Maria Hospital

The parents of Portuguese-Brazilian twins who received the drug for spinal muscular atrophy (SMA) want Santa Maria Hospital, in Lisbon, to authorize all consultations for the girls to be online instead of in-person consultations. The request was sent yesterday to Carlos Neves Martins, the president of the board of directors of the health unit, also requesting that the doctor António Levy, head of the pediatrics service at that hospital, not be present at these consultations, “as he has come to the public to expose pejorative and untrue way” the mother of the twins Maitê and Lorena.

The children returned to Brazil around two years ago and their parents say they are afraid to return to Portugal after the “campaign” they say was carried out against them. At issue is the suspicion that the twins’ naturalization process and subsequent access to Zolgensma (the medicine for breast cancer that costs several million) had a “wedge” from Marcelo Rebelo de Sousa.

Daniela Martins and Samir Assad Filho, living in Brazil, have already filed a criminal complaint against the doctor who is also coordinator of the Neuropediatrics Unit at Santa Maria Hospital.

The twins have been missing hospital appointments (the last one they didn’t attend was on January 8th this year) and their parents claim that, as the family is in Rio de Janeiro, they don’t feel safe traveling to Lisbon. The hospital granted a postponement of the consultation for 120 days but the parents did not accept this and are now asking for consultations to be carried out online.

“If it is not possible to carry out all of them in the requested modality, only the consultation be carried out to verify the development using the CHOP INTEND and HAMERSMITH scale, or another that obliges the State in a contract with the pharmaceutical company so that there is no penalty to the treasury. public and research, in the online modality, and non-mandatory consultations can be cancelled”, state the parents in the document sent to the hospital, making specific reference to the consultations that all children who received Zolgensma must, obligatorily, carry out to assess the evolution of treatment.