the disease progresses and the SC baby loses movement while waiting for the medicine

The Ministry of Health has announced that Zolgensma will comply with the preliminary decision to release the value of the drug to treat Spinal Muscular Atrophy (AME), the child of Isabelly Domingos Ferreira, Paulo Lopes, the Great. Florianópolis. While waiting for treatment, the disease continues to progress and puts her movements in jeopardy.

The ministry said in a statement that “the period for purchasing domestic and imported medicines is around 90 and 150 days, respectively.” The order was issued on March 2 this year, taking into account the longest 150 working day period for the purchase of imported medicines, the deadline for treatment of girls is July 29th. The report asked the ministry at what stage the bidding process for the purchase of Zolgensma is underway, but until the text was published, there was no response.

With the advancement of SMA, Isa, as he lovingly treats her, had to start using splints on her legs, in addition to orthosis, indicating physiotherapeutic treatment. The family regrets that the child’s body movements are becoming more and more restricted on social media campaigns.

“Unfortunately, the AME has done a lot of damage. With daily progress, Isaac is no longer able to move his small body. The only movements that are still there are in the small hands and a little in the small arms, ”the family said.

The family watches as the child’s illness progresses as he or she waits to comply with the court’s decision and waits for the child to receive a single dose of medication that the disease cannot progress. “Isa has until this year to take the medicine. They have to comply. It’s Isa’s right, ”said the girl’s mother, Adriele Adriana Domingos of Brazil.

“I’m very upset,” my mother said.

Giovana Borges, a volunteer in the “Ame Isa” campaign, which raises funds for the girl’s medical expenses, explains her experience in other cases of children with SMA that she does not see the time taken by the Ministry to obtain the medicine. Of health. The coordinator sees the government’s response as positive and concerned. “Let us pray that they will fulfill this time they are talking,” said Giovana.

Family members and volunteers say the baby is suffering from the progression of AME, which is causing atrophy in the baby’s limbs.

Position of the Ministry of Health

The Ministry of Health has announced that it will comply with the ruling. It is important to note that the period for purchasing national and imported medicines is between 90 and 150 days, as the purchase follows the provisions of the law governing the offers and contracts of public administrations.

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Legal struggle

The order authorizes Isara to pay for the cost of genetic therapy with Zolgensma, Curitibar transportation and air URI, in addition to the expenses and fees of the paid medical team, however, the order has not yet been complied with.

He obtained a ruling in favor of the judiciary because the family had a fixed thesis, that is, a previous decision, on a case with a similar request, which condemned the Union to pay for treatment.

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Graziela Costa, in the case of the Isa girl, the lawyer explained that the Union said it could not provide the medicine because of the high cost and lack of evidence of scientific effectiveness.

However, the lawyer says that out of the 23 cases given to the medicine, similar to the child, they benefited from genetic treatment. The lawyer emphasizes that drug release is a right, based on a set of laws.

“We asked for a daily fine, the judge applied the sentence, but he did not apply the fine,” says Graziela. The judge appealed the fine. Currently, the Union is not penalized for failing to pay the amount of treatment set out in the previous order.

“The only thing that prevents the Union from exercising this right is the economic problem. The Union puts its financial value before life, ”said Graziela.

The family presented the girl’s reports to the Justice Department and showed Zolgensma the pictures of the children who had been made available and healed.

“Zolgensma is the only treatment that will synthesize SMN1 protein,” says the lawyer. Isa’s body does not produce this protein, which acts as a function of motoneurons that control muscles and other tissues. Other treatments can be used in SMA treatment, there is one more suitable for each type of disease.

An example is SMA, type 2, which is usually treated with the drug Spinraza, which requires a dose every four months and costs around R $ 300,000. The drug does not work well in SMA type 1 cases.

Compliance with the court’s decision to release treatment for AME is often delayed because of the value of the drug, the lawyer said, adding that he hopes to pass treatment soon.

remember the case

Degenerative disease is a genetic disorder that impairs the body’s ability to produce a protein that is essential for the survival of motor neurons, which promotes simple gestures of life, from inhalation to inhalation to movement, as in the case of the girl.

The little girl was hospitalized at Joana de Gusmão Children’s Hospital in Florianópolis until February 23rd. he was discharged. The mother says that the child is taking Spiranza, a medicine given by SUS, which in some cases helps to prevent the progression of the disease.

“Spinza helps to delay the effects of SMA, but it does not prevent the body from progressing. Zolgensma is the only medicine in the world that can act directly on the cause of the disease, producing copies of missing proteins in the body, ”explains Adriel.

The drug trial began in November 2021, but the fundraising campaign continued. Giovana Borges is a volunteer for the “Ame Isa” campaign, which says that the amount received in favor is included when the medicine is paid for. The union uses the resources obtained by the family and implements the rest of the values.

Watch videos posted by family on social media:

Video: Social media

SMA diagnostic trajectory

Until she was three months old, Isabelly shook her head and held on to her body. Four months later, he did not move his body, the family recalls. The mother says that the initially recommended vitamins were gone.

Between the ages of five and six months, the mother noticed that her daughter had lost weight and, when she returned to the doctor, the initial opinion was that her mother’s milk did not support her daughter. The girl started taking the baby formula, but still the weight did not change.

According to the mother, at the age of seven months the baby received a medical indication to make a baby food, but the baby could not swallow and was drowned. Isabelly underwent several tests that did not find the cause of the symptoms.

Spinal Muscular Atrophy (AME), type 1, arrived at the age of nine months, the girl was in a consultation due to an allergy, when she was diagnosed with a respiratory problem and the baby was hospitalized on suspicion of the disease. Tests were performed, sent for analysis in São Paulo, and within 15 days the family responded to Isa’s symptoms.

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