The mother of the girl from Rolando Nina Renata Trueno is desperate because, despite the favorable ruling of the Justice for her daughter to receive the medicine Zolgensmaknown as “the most expensive in the world” that would stop his spinal muscular atrophy, To date, the State has not complied with the judicial order issued.
What was joy and celebration a few days ago when On April 22, the federal judge No. 1 of First Instance, Sylvia Aramberri, ruled favorably so that the little girl receives the drug Zolgensma, it turned into darkness and uncertainty because the State refuses to pay its fair share.
The girl’s lawyer Paula Minuchi, indicated that “justice condemned the social work (Ospersaams), and to the State (Ministry of Health and Superintendence of Health Services) so that 60% and 40%, respectively, pay the price of the medicine so that Nina can receive the medication”.
“The indication is that Zolgensma should be infused before two years of age, in addition to other parameters that must be taken. Nina turned two years old on April 27 and although that period can be varied minimally, the reality is that the disease she has is degenerative and with each passing day motor neurons die and do not recover”, Minuchi said.
It is necessary to pay for the medicine so that the laboratory issues the manufacturing order, and from that moment it takes approximately 15 days to receive it. to be applied. “The problem is that no one wants to pay,” lamented Verónica Gómez, Nina’s mother.
“The prepaid He told us to deposit the money we collected on our own, which we already did, and this Thursday it completed its 60%, but they asked the judge that this money not be mobilized until the State completes what is missing, that is to say that we cannot use the funds to order the medication”.
“The State filed an appeal against the sentence, and a complaint regarding the effect with which the appeal was granted, intending with these procedural acts to slow down the medication purchase procedure. Mindful of non-compliance with the ruling by the State, We have requested that the state accounts be seized”confirmed the lawyer.
“We are taking care of Nina as much as we can, but time is running out and we don’t want it to get any more complicated,” her mother confessed and explained that On June 1, he would have to go back to the medication he has been receiving until now (Spinraza). If applied, it makes it impossible to apply Zolgensma immediately, which is extremely serious.
For his part, Minuchi stated that Failure to comply with a court ruling relating to health issues, where nothing more and nothing less than the life and right to health of a girl is at stake, cconstitutes a flagrant violation of constitutional guarantees”
“The State, which is the guarantor of the health of all the inhabitants of the Nation, must comply with the sentence. If it is not doneviolates the National Constitution, international human rights treaties, and the best interests of the child”closed the lawyer.
This Thursday, Nina had to undergo a new laboratory to verify that she does not have antibodies and to be able to be infused with the medication. That sample is analyzed in the Netherlands and you have to wait about fifteen days for them to send the results. “They are looking for a way to extend everything so that time runs out,” Veronica denounced.
“It is unfortunate that the State itself turns its back on us since it is not only for the most vulnerable but to take care of all Argentines and Nina is. We did everything we could to be able to raise money with the help of the people, and what we raised we put to collaborate with social work and the State”, she emphasized.
“It is illogical that a common lower-middle class citizen has to contribute money to the State to make it easier for him to support a medicine. We are talking about the Ministry of Health of the Nation, not a kiosk”, refuted Verónica.
The laboratory confirmed to us that the medication costs 1,700,000 dollars plus VAT”, the mother commented and made a simple but eloquent analysis: “If the State wanted to help, it would not charge VAT and it would be cheaper for him what he has to contribute”.
“And instead of charging him the 500 million annual taxes that my prepaid contributes, I could charge him 300 million and the other 200 tell him to use it for Nina’s medication; if she wants to, she can, ”she argued.
Finally, and with the anguish and anger on the surface, he stressed that “the only thing left for us is to wait as we have been doing since the end of September last year and with our hearts in our mouths.” For now, the State has not complied and we hope that the Justice orders the seizure of their accounts.