The Ministry of Health decided on Tuesday (9/29) to deny the request of the parents of little Kyara Lis de Carvalho Rocha, aged 1 year and 2 months, and therefore will not cost the drug Zolgensma for the child diagnosed with Spinal Muscular Atrophy (EBF). The drug costs about R $ 12 million and uses gene therapy to stop the degenerative disease.
The decision came after the Supreme Court Justice (STJ) Minister Napoleão Nunes Maia Filho determined that the Union should inform whether or not the drug would be provided for the small patient. Recently, the folder granted the value of Zolgensma to another child in Brasília with the same disease as Kyara.
The deadline expired last Sunday (27/9), when there was a big motorcade through the streets of Brasília with the objective of sensitizing the authorities responsible for the analysis.
In a note sent to the Rear Window column, the Ministry of Health reported that “it monitors the evolution of drugs and therapies aimed at patients with chronic, rare and highly complex diseases for the incorporation of new treatments in SUS, based on scientific evidence”.
Still according to the folder, “last year, after great effort, the Ministry of Health incorporated the medicine Spinraza to SUS, to assist patients with type I EBF. Although therapy with Zolgensma is possibly transformative, conclusions are lacking as to the effectiveness to long term, however the portfolio accompanies daily clinical studies on treatment ”.
The text ends with the rejection of Kyara’s parents’ request. “The decision of the Ministry of Health, in the specific case, was rendered according to the opinions of the technical area, internal control and legal advice which pointed out the technical and legal impossibility to fulfill the request”.
EBF is a genetic, rare, neuromuscular, serious, degenerative and irreversible disease that interferes with the body’s ability to produce a protein considered essential for the survival of motor neurons (SRM), responsible for simple vital voluntary movements, such as breathing, swallowing and move.
The medication should be administered until the patient is 2 years old. Time, therefore, is a severe adversary in the case of Kyara and three other babies with the same disease. To give you an idea, in the case of the girl of 1 year and 2 months, there is a great chance that she will stop breathing alone in two months. In 40 days, Kyara can permanently lose digestive capacity.
In July of this year, the Metropolises I had already reported the story of Kyara and Marina Macedo Lima Ciminelli, aged 1 year and 8 months. As also anticipated by the portal, after seven months of a decision by the Federal Regional Court of the 1st Region (TRF-1) determining to the Ministry of Health the supply of the most expensive medicine in the world to Marina, the transfer of R $ 12 million to the family of girl was held last Friday (9/11).
Now, in addition to Kyara, two other children from the Federal District are running out of time to obtain, either through donations or through SUS itself, the almost inaccessible – but indispensable – medication. This is the case of Gabriel Montalvão, 7 months, and Helena Gabrielle, 9 months.
A solidarity network has been formed on social networks, but the sum is still far from the millionaire goal for the three families.