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A proposal by Chamber IV would give a seven-month-old baby the opportunity to access one of the few medicines to treat a rare disease known by this name. Werdnig-Hoffman disease, Which was rejected at the National Children’s Hospital due to the high cost of treatment.
On 22 March, Constitutional Chamber judges declared a protection appeal filed by the child’s parents admissible. The little girl was diagnosed with spinal muscular atrophy type I in December 2023.
In their plea before the magistrate, the girl’s parents pointed out that Spinal Muscular Atrophy (SMA) is a genetic disease that affects the motor neurons in the spinal cord. Since these cells are connected to muscles that can be controlled, such as those in the arms and legs, loss of these neurons leads to the inability to walk, crawl, breathe, swallow, and control the head and neck and, eventually, Produces death.
The first approved treatment for this disease is Spinraza, known as nusinersen. Neuropediatric specialists at the National Children’s Hospital recommended this drug, however, the Central Pharmacotherapy Committee of the Costa Rican Social Security Fund (CCSS) did not approve it on January 18 due to its high cost.
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At sentencing, the magistrate requested the intervention of an expert interconsultant expert in neuropaediatrics from the College of Physicians and Surgeons, who conducted an assessment. In addition, they required forensic medicine from the Department of Legal Medicine of the Organization of Judicial Investigation (OIJ) to examine the minor to determine whether the use of the drug was justified.
Both experts concluded that the drug nusinersen has been approved by the United States Food and Drug Administration (FDA) since 2007. The judges also took into account numerous studies on its effectiveness at all stages of the disease. The experts consulted by Chamber IV supported the criteria of the doctor treating the minor under guardianship who requested this treatment.
Thus, in Vote No. 2024-7879, the Magistrate ordered the immediate adoption of necessary measures and appropriate actions to ensure that the child receives treatment with Spinraza nusinersen in the dose and for the period prescribed by his treating doctor.
It should be noted that there is still no cure for this disease and available medications can only slow the progression of muscle weakness, according to National Health Library From the United States National Institutes of Health.
Read more: Medical experts to advise judiciary to resolve appeals against CCSS
It was not possible to obtain comments from Children’s Hospital, as CCSS reported last Friday that the press office would be on a collective leave period and enjoy the Easter holidays, and would not return until April 1.
