Mothers of autistic children and children with disabilities protest against taxing role

Concerned with the judgment of the Superior Court of Justice (STJ) on the procedures of the National Health Agency (ANS), entities linked to children with disabilities and autism protested, this Wednesday, in front of the Court of Justice of Rio Grande do Sul. South (TJRS), in Porto Alegre. The Movimento Mães Atípicas RS, the Angelina Luz Project and the Association of Relatives and Friends of People with Autism of Porto Alegre (Afapa) claim that the change from the exemplary role – which allows the entry of new therapies – to a taxing role, which establishes a determined list of coverages and restricts procedures performed by health plans, will harm health plan users.

A member of the Movimento Mães Atípicas RS, Tatiane Leal explains that the exhaustive role will prevent the judicialization of some cases that involve exams with high values. This includes denial of exams, therapies and medical specialties. According to Tatiane, ANS is responsible for preparing the list of Health Procedures and Events, which constitutes the mandatory coverage for regulated health plans (contracted after 01/2/1999 or adapted to Law 9,656/98).

The list has more than 3,000 items covering all the diseases listed in the World Health Organization’s (WHO) International Statistical Classification of Diseases and Related Health Problems. Currently, the list of mandatory coverage prepared by the ANS and periodically updated is exhaustive under Law 9,961/2000; that is, the health procedures and events on this list cannot be denied by the operators, under penalty of having the marketing of plans suspended or being fined.

President of the Angelina Luz Project, Érika Rocha joined other mothers and deputy Luciana Genro (Psol) in the protest in front of the TJ. Mother of little Angelina, 5, who suffers from autism, Érika worked as a kindergarten teacher, until she became an atypical 24-hour mother. She explains that the consequences of the change to the taxing role can cause damages to thousands of health plan users, reaching families of people with disabilities (PCDs) or who suffer from spinal muscular atrophy (SMA).

“Autistic people will be left without care, without his specialized treatments, because we get this through court injunctions that health plans usually deny this access”, he says. According to Érika, the hope for PCD families, people with a rare disease, such as cancer or SMA, is to be able to seek legal action. “If it’s an exhaustive list, we can no longer seek judicial means for a more invasive treatment, for a more expensive treatment, a more expensive drug”, she stresses.

In Érika’s assessment, if the change is confirmed, the Unified Health System (SUS) will be able to feel the reflexes of the increase in demand for treatments. “If today people spend two, three, four, five years in a queue, sometimes they even die waiting for treatment, for surgery, how will all these people from health plans come to the SUS? we are going to have a catastrophe”, he projects, highlighting the possibility of increasing the processes against the State.

She highlights that many mothers are abandoned by their partners when they are diagnosed with the child’s illness. And some need to resort to the Continuous Cash Benefit (BPC), worth a minimum wage, and try to pay for a health plan. “These mothers go hungry, because it’s not just the treatment, they are controlled medications, diapers, special milk. So, they pay for the treatment to have access to all specialized therapies even if it takes a year, two years, three years, because everything is judicialized even though it is our right”, he says.

According to the STJ’s advice, the trial was suspended on February 23 due to a request for a view and, so far, there is no date to resume. The request for a view has a period of 60 days renewable for another 30.

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