Father of child with genetic disease who needs treatment outside the taxing role says he feels ‘no alternative’ | Paraná

Psychiatrist, psychopedagogy and brain regeneration therapy are some of the needs of little Eduardo Hobi Berbigier, 13 years old, diagnosed with adrenoleukodystrophy, a rare disease that affects the nervous system.

Despite having health insurance, the child’s family was never able to access treatments through the operators.

With the decision of the Supreme Court of Justice (STJ) last Wednesday (8) that health plans do not need to cover procedures that are not included in the exhaustive list of the National Supplementary Health Agency (ANS), the feeling that remained, according to the father, it was the one of defeat.

“I have to pay because so far I haven’t gotten any through the health plan. I had some that could have been the plan, a brain regeneration job that is very expensive, but now reading there I saw that it really won’t work. It’s out of the role. very complicated […] We fought for a few years against the plans, against the public system itself to achieve small victories and now comes this crushing defeat”, said Eduardo de Abreu Berbigier.

Eduardo said that, before the decision, he considered filing an appeal to try specific treatment for his son, but now he must await a review of the STJ’s decision by the Federal Supreme Court (STF).

He also said that now he sees himself “with no alternative”, other than to continue paying out of pocket for his son’s treatments. At the same time, he maintains health insurance for other family matters.

  • Understand the tax role below.

In the father’s assessment, the analysis of the ANS role is based on the question of survival or small improvement in quality of life.

In his opinion, however, what should be taken into account is the guarantee of treatments in which children with specific therapy needs can “reach their maximum potential or have a quality of life close to their maximum”.

“We have to analyze all aspects of a child’s life. She has to have all the assistance. There’s no such concern, it’s a very, I wouldn’t even say rational thing, but it’s a very cold thing. I think it’s purely and simply economic power dictating the rules.”

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Since the son’s diagnosis, the family created the Berbigier Institute, where they help families of children with rare diseases and seek public policies that can help the little ones.

The STJ changed, on Wednesday (8), the understanding of the list of procedures listed by the ANS for the coverage of health plans.

Before, the ANS list was considered exemplary by most of the Judiciary. This means that patients who were denied procedures, exams, surgeries and medications that were not on the list could go to court and get this coverage. This is because the role was considered the minimum that the plan should offer.

  • Learn how to consult the list of procedures that must be covered by health plans

The plans, therefore, should cover other treatments that are not on the list, but that have been prescribed by the doctor, are justified and are not experimental. With the new understanding, the list contains everything that plans are required to pay: if it is not on the list, it has no coverage, and operators are not required to pay.

Lawyers explain decision

Melissa Kanda, a lawyer specializing in Medical and Health Law, with a postgraduate degree in Medical Law, told the g1 that the STJ established criteria for the exhaustive list, but that, in practice, the relationship between operators and customers does not change.

According to her, before the decision, health plans routinely denied treatments outside the list, and families appealed to the courts. The lawyer explains that the decision, in her opinion, will reflect precisely when families seek justice to obtain therapies or medicines.

“When I need something that is outside the list, the STJ established some criteria, some exceptions for the beneficiary to continue having access to treatment outside the list. What are these criteria? are on the list, but it was not effective to treat the disease. Or what I need is not on the list, there is nothing on the list that can treat the disease, while what I need is out of the list”.

Adriano Barbosa is a lawyer and has a master’s degree in Civil Procedural Law. In his opinion, one possibility in the face of the decision is that people who have processes in progress, or who intend to file lawsuits in court for situations involving the lack of coverage, may have to pay contractual amendments.

“It is possible that those people who are able to negotiate with the health plan operator a contractual amendment. This amendment, obviously, will imply higher costs. This amendment could provide, through negotiation with the health plan operator, the coverage of procedures that are not expressly provided for in the list. This is the immediate, most practical possibility for those who have the financial means to do so”.

In the case of people who have preliminary decisions for treatment or access to medicines, the decision of the STJ does not mean the orders will be invalidated, according to the lawyer.

“It will depend on each specific case. Before people despair, it’s important to look for your lawyer […] Each case must be treated in a very particular and individualized way.”

  • Health plan users fear losing procedures after STJ decision

Which procedures lose coverage of the plans?

The role of the ANS is basic and does not include many treatments, such as recently approved drugs, some types of oral chemotherapy and radiotherapy, and surgeries with robotic techniques, for example. As the list is exhaustive, the plans are exempt from the obligation to pay for these treatments.

In addition, the ANS limits the number of sessions of some therapies for people with autism and various types of disabilities.

Many patients need more sessions than stipulated to achieve results with these therapies, so in the current model, they get payment approval by the health plan.

The STJ’s understanding is that the list, although exhaustive, admits some exceptions, such as therapies expressly recommended by the Federal Council of Medicine (CFM), cancer treatments and “off-label” medications (used with a medical prescription for treatments that are not on the package insert for that medication).

If there is no therapeutic substitute or after the procedures included in the ANS list are exhausted, coverage for treatment outside the roster may be provided by the attending physician or dentist.

For this, however, it is necessary that:

  • the incorporation of the treatment to the ANS list has not been expressly rejected;
  • there is proof of the effectiveness of the treatment in the light of evidence-based medicine;
  • there is a recommendation from nationally renowned technical bodies, such as Conitec and Natijus, and from foreigners;
  • dialogue between magistrates and specialists, including the commission responsible for updating the ANS list, is carried out, when possible, to address the absence of this treatment in the list of procedures.

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