Even without a final decision from the STJ, plans cut therapies for autistic people, and mothers protest

Even before the decision of the STJ (Superior Court of Justice) on the judgment that analyzes whether health operators may or may not be required to pay for procedures not included in the ANS (National Supplementary Health Agency) list, health plans have interrupted therapies that were already being offered to children with ASD (Autism Spectrum Disorder) because they were not on the regulatory agency’s list.

Started in September 2021 and suspended in February due to a request for a view (more time to study), the trial will resume this Wednesday (8). The decision has been long-awaited because it could serve as a basis for future judgments. So far, although many decisions are favorable to users, there is judicial uncertainty, with different interpretations of the processes, depending on where it is judged.

The fight in the STJ involves the beneficiaries of plans and health operators.

Users, patient associations and consumer protection want an exemplary role, that is, that the ANS list works only as a minimum reference and that other demands can be met upon medical request.

Health plans, on the other hand, defend an exhaustive model, without the possibility of including therapies or exams not listed by the regulatory agency, a model that works in other countries, such as the United Kingdom and Canada.

So far, the score at the STJ is tied at 1 vote to 1. Rapporteur Luiz Felipe Salomão voted in favor of the exhaustive list, while Nancy Andrighi, of the exemplary list.

In the presentation of his vote, last September, Minister Salomão maintained that the tax model is necessary to protect the beneficiaries of the plans from excessive increases and to ensure the evaluation of new technologies in the health area. But he admits exceptions, such as therapies that have express approval from the CFM (Federal Council of Medicine).

Despite the impasse, in recent months health plans in at least four states (São Paulo, Rio de Janeiro, Bahia and Rio Grande do Norte) have suspended therapies already granted to children with autism, some guaranteed through injunctions.

Among the therapies is ABA (applied behavior analysis), which is based on behavior analysis and interventions to stimulate language, daily independence and reduce risky behaviors, such as aggression.

Last month, a group of 80 mothers of children with autism, from Salvador (BA), protested after the plan suspended this treatment. The operator’s justification, according to the mothers, is that the role of the ANS does not provide assistance coverage for this type of therapy.

In April, 300 parents of children and adolescents with autism also protested in Natal (RN) after the plan suspended therapies carried out by TAs (therapeutic assistants), who work in the home and school environment, helping the child with autism in the organization of daily activities, for example. The operator’s argument for the suspension was also the lack of forecast on the ANS list.

Secretary Luzia, who has a six-year-old autistic son, says that without the therapies and the professional who assisted the child in the classroom, the boy stopped going to school. “He’s more aggressive.” In general, these therapies require 30 to 40 hours per week and the set of them can cost around R$ 18,000 per month, according to lawsuits in the courts.

According to autistic rights activist Andrea Werner, mother of Theo, 13, diagnosed with ASD, since Minister Salomão expressed his vote in favor of the exemplary role, in September 2021, several plans have suspended the treatment of children with disabilities.

“The argument is always the same: as it is not on the ANS list, we will no longer respond. It generated a large ripple effect even without reaching a final decision. There are also several judges citing Salomão’s vote to overturn injunctions already granted.”

According to lawyer Vanessa Ziotti, legal director of Instituto Lagarta Vira Pupa and mother of autistic triplets, health plan lawyers have made a “copy and paste” of Salomão’s vote to plead the overturning of injunctions that guaranteed full assistance to people with disabilities, including home care services.

Even in cases in which the injunction favorable to the patient was maintained, there are repeated breaches by health operators, says Ziotti. “We observe a lack of constraint on the part of operators in breaching the injunction. They are not afraid, even with the imposition of daily fines of R$300, R$500.”

The lawyer says that another practice of the operators has been to discredit therapists and clinics that only care for autistic people and, at the same time, create their own care centers that concentrate children with various disabilities, such as Down syndrome.

THE Sheet found with two medical auditors that the verticalization of services is a way that operators have found to control the costs and outcomes of these therapies. According to them, who request anonymity, there are cases being investigated of doctors who prescribed therapies aimed at autistic people that only existed in certain clinics, at very high prices and without evidence of effectiveness.

But despite these controversies, Vera Valente, executive director of FenaSaúde (National Federation of Supplementary Health), understands that, in the case of autism, the situation has already been pacified since July 2021, when the ANS authorized the right to an unlimited number of sessions with speech therapists, psychologists, physiotherapists and occupational therapists.

“But even that needs to be a little more detailed because there are situations of children who do 80 hours a week of things. Damn! These children sleep together [por terapeutas], eat together? There are aspects that are much more educational than treatment. Health insurance is treatment,” she says.

According to her, the questions that exist in relation to therapies for autism are those that go beyond what is established by the ANS. “These are very alternative things, which need a seal from medical societies. You can’t do things without scientific proof with other people’s money. [que têm planos de saúde].”

The resumption of the trial at the STJ this Wednesday should be accompanied by new protests in Brasília.

In Vera’s opinion, the list has always been exhaustive, it includes all the diseases listed in the ICD (International Classification of Diseases) and its updating is based on scientific evidence, carried out by a collegiate and broad participation of society. “It is evaluated permanently and quickly. If it has enough elements to show that the product is different from what already exists, it is approved.”

According to her, 50% of what is submitted for incorporation, the ANS already discards it because it does not have the minimum criteria necessary for the evaluation.

Valente recalls that in no country in the world there is unlimited coverage of all treatments or procedures and that all undergo evaluations.

She says that there is enormous pressure for the incorporation of very expensive drugs, such as those for rare diseases, which sometimes get registered with incomplete clinical studies and which will need to be validated in the real world.

“We understand the situation of mothers, they look at their case, at their pain, but society’s decision has to take everyone into account.”

In a note, Abramge (Brazilian Association of Health Plans) said that formulating the price of a product with no coverage limit, which includes any and all existing procedures, medicines and treatments, can make access to a health plan unfeasible and put the continuity of supplementary health in Brazil in check.

“The concept of having an exemplary list is absolutely contradictory. The current list of procedures has more than 3,000 items, which have passed the Health Technology Assessment (HTA), widely recommended by the WHO [Organização Mundial de Saúde] and recognized by the international community. This process is essential in health systems.”