The father of a child with a genetic disease says he has no “alternative” Paraná

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

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

With the decision of the Supreme Court of Justice (8) last Wednesday (8) that health plans do not have to cover procedures that are not included in the exact list of the National Supplementary Agency for Health (ANS), the feeling remained, father, failure.

“I have to pay because I haven’t gotten anything through the health plan so far. If I had a few plans it might have been, brain rebuilding work is quite expensive, but now that I’ve read it I’ve seen that it won’t be. He is out of the role. very complicated […] We fought for a few years against the plans, to achieve small victories against the public system itself, and now comes this tragic failure, ”said Eduardo de Abreu Berbigier.

Eduardo said he had thought about filing an appeal before the decision was made to judge his son’s exact treatment, but now the Supreme Court (STF) must await a review of the STJ’s decision.

He also says he now sees himself as having “no alternative” and continues to pay for his son’s treatments out of his own pocket. Along with maintaining a health plan for other family matters.

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

In his view, however, all that needs to be considered is the guarantee of treatments that will help children with specific therapy needs “reach their full potential or be close to their maximum quality of life”.

“We need to look at every aspect of a child’s life. He needs all the help. No worries like that, very, I wouldn’t even say the rational thing, but it’s very cold. I believe that the rule of law is pure and simple economic power. ”

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Since her son was diagnosed, the family founded the Berbigier Institute, where they help families of children with rare diseases and seek public policies that can help the little ones.

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

Previously, the ANS list was considered exemplary by most of the Judiciary. This means that patients who were denied procedures, tests, surgeries, and medications that were not on the list could go to court and get that coverage. That is, the role that the plan had to offer was considered to be the minimum.

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The plan should therefore include other treatments that are not on the list but are not prescribed, justified, and experimental by the doctor. With the new understanding, the list includes everything that planning has to pay for: if it’s not on the list, it has no coverage, and operators don’t have to pay.

Lawyers explain the decision

Melissa Kanda, a lawyer specializing in medical and health law with a postgraduate degree in medical law, said. g1 The STJ set criteria for a detailed list, but in practice the relationship between operators and customers does not change.

According to him, before the decision was made, the health plans denied treatment outside the usual list, and the families went to court. The lawyer explained that the decision, in his opinion, will be reflected in the fact that families are demanding justice for their therapies or medicines.

“When I need something off the list, the STJ set some criteria, some exceptions for the beneficiary to continue to have access to treatment off the list. What are those criteria? They are on the list, but the treatment was not effective. anything to treat the disease, and what I need is off the list. ‘

Adriano Barbosa is a lawyer with a master’s degree in Civil Procedural Law. In his view, the decision is an option for people who are in the process of initiating proceedings, or who intend to file a lawsuit due to lack of coverage, to have to pay for contract changes.

“These people are likely to be able to negotiate a contract change with the health plan operator. This change will obviously lead to higher costs, which is not specifically provided for in the list. This is the most practical immediate option for those with financial resources.”

In the case of people with prior decisions for treatment or access to medicines, the decision of the STJ does not mean that the orders will be revoked, the lawyer stated.

“It will depend on each specific case. Before people give up, 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 the STJ decision

What procedures lose plan coverage?

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

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

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

According to the STJ, the list, while accurate, supports a few exceptions, such as therapies specifically recommended by the Federal Medical Council (CFM), cancer treatments, and “off-label” medications (for over-the-counter treatments). in the package of that medicine).

In the absence of a replacement therapist or after the exhaustion of the procedures included in the ANS list, coverage for out-of-list treatment may be provided by the attending physician or dentist.

To do this, however, it is necessary to:

  • the inclusion of treatment on the ANS list has not been specifically ruled out;
  • there is evidence of the effectiveness of treatment in the light of evidence-based medicine;
  • there is a recommendation from nationally renowned technical organizations such as Conitec and Natijus, and from abroad;
  • a dialogue between magistrates and specialists, including the committee responsible for updating the ANS list, is carried out, where possible, to ensure that such treatment is not included in the list of procedures.

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