Children

‘They are deciding people’s lives,’ said the mother of the child suffering from achondroplasia about the STJ decision. Paran

It is hoped that the decision will have an impact, for example, in cases where the patient has access to treatment in court. In the case of 11-year-old Maria Fernanda Lopez, achondroplasia is a disease known as dwarfism.

Per g1 ParanaThe mother, Jessica Lopez, a resident of Curitiba, said she felt her hands were tied.

The business administrator said he received a long-awaited telephone call on Monday (6) where the health plan said it would buy the necessary medication from Maria Fernandar.

The supply of voxjogo (Vosoritida) through the health plan was determined by the judge according to a writ of mandamas filed by the family about a month ago. The drug costs about 1. 1.3 million a year, the mother said.

The National Health Surveillance Agency (ANVISA) marketed the drug in Brazil only late last year. As soon as the release was granted, Maria Fernandar’s family set out to collect the necessary tests, reports and documents, and to make a judicial request – which took place about a month ago.

However, with STJ’s decision, Jessica said she did not know what could happen to her daughter’s treatment – who did not even have access to the medication, since the health plan announced just two days ago that it would deliver the product. .

“We feel hostage to the system. They’re determining people’s lives, people depend on it. I’m rooting for a miracle,” Jessica said.

Maria Fernanda contracted achondroplasia while in her mother’s womb – Photo: Private Archive

Attorney Ney Fabiano Brandão represented Maria Fernandar in court and was specially dedicated to patients who go to court to gain access to treatment.

Brandao said the STJ decision does not automatically suspend treatment provided by the health plan, but creates legislation that is “detrimental” to patients’ rights and will “certainly have a negative impact on many judges and courts in the country, who may use them to support their decision.” Please. ”

“The goal of litigation is to protect the patient’s survival, or to minimize the likelihood of a cure. There are a myriad of diseases that, if treated properly, guarantee patients’ lives, such as cancer, diabetes and rare diseases. Depending, and not on the plan or the national health agency “, the lawyer argued.

The lawyer explained that STJ’s decision reduced the coverage of the therapy that plans had to provide, failing to meet the needs of a large portion of patients.

Maria Fernanda contracted achondroplasia while in her mother’s womb. The disease is caused by a bone dysplasia, caused by a genetic mutation, and which affects the development of so-called long bones – such as the arms and legs.

Since the birth of her daughter, the mother says, she has been under the care of a doctor and is being treated for the disease. However, according to Jessica, the medicine needed in court is more modern and according to the doctors with the baby, it is able to improve the quality of life, autonomy and bone development of Maria Fernanda.

“People affected by dwarfism live full of limitations, they have no autonomy,” he said.

The mother says she has waited all her life for her daughter to have this kind of medicine, and she fears that her treatment of Maria Fernanda will be in jeopardy. Since it acts like a growth hormone, the drug needs to be administered as the patient grows.

In the case of Maria Fernandez, physicians estimate that there is still a window of four years at which time drug use will have an effect.

“We are already running out of time. We are 4 years old. Every week we lose less treatment, less benefits,” said the mother.

Jessica says that because of the high cost of the drug, the only way to get it is through justice. He regretted the way STJ was deciding on health insurance coverage and said that the parents of other children with achondroplasia were also “sad and desperate”.

“It’s not a car tax that’s become more expensive, it’s a life, it’s a life that can dry up because of it. No such decision can be made,” he said.

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