The father of a child with a genetic disease who needs treatment outside of treatment, he thinks ‘there is no alternative’ Paran

Psychiatrist, psychiatrist and brain regeneration therapy is the need of some 13-year-old Eduardo Hobby Barbigier, a rare disease that affects the nervous system.

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

With the decision of the Supreme Court of Justice (STJ) last Wednesday (8) that health plans do not need to cover practices that are not included in the full list of the National Complementary Health Organization (ANS), the feeling that remains, according to the father, was defeat. One.

“I have to pay because so far I have not received anything through the health plan. I had something that could be planned, a brain rejuvenation job that is very expensive, but now falling into it I saw that it would not really work. It’s out of role. Very complicated […] We have fought for years against the plan, against the public system for small victories, and now this crushing defeat has come, “said Eduardo de Abreu Barbizier.

Eduardo said that before making the decision, he had considered filing an appeal to seek specific treatment for his son, but that he would now have to wait for the Federal Supreme Court (STF) to review STJ’s decision.

He added that he now sees himself as “having no choice” but to continue paying out of pocket for his son’s treatment. At the same time maintaining a health plan for other family matters.

  • Understand the role of tax below.

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

According to him, however, what should be considered is a guarantee of treatment where children in need of certain therapies can “reach their maximum potential or achieve a standard of living close to their maximum”.

“We need to analyze all aspects of a child’s life. He has to cooperate in all kinds. No worries like this, it’s a very, I wouldn’t even say a reasonable thing, but it’s a very cool thing. I think it refers to the rules of economic power in a pure and simple way. ”

  • ‘They are deciding people’s lives,’ says the mother of the child suffering from achondroplasia about the STJ decision

Since the boy’s diagnosis, the family has set up the Barbizia Institute, where they seek out public policies that can help families of children with rare diseases and help young ones.

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

Earlier, the ANS list was considered by most of the judiciary to be exemplary. This means that patients who have been denied procedures, tests, surgery and medications that were not on the list can go to court and get this coverage. This is because the role was considered to be the minimum that the plan should offer.

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Therefore, the plan should cover other treatments that are not on the list, but which are prescribed by a doctor, are not fair and experimental. With the new understanding, the list includes everything that needs to be paid for the plan: if it is not on the list, it has no coverage and operators do not need to pay.

The lawyer explained the decision

Melissa Kanda, a lawyer specializing in medical and health law with a master’s degree in medical law, says g1 That STJ has set the standard for a complete listing, but in reality, the relationship between operators and customers does not change.

According to him, prior to the decision, health plans routinely denied treatment off the list and families appealed to the court. The lawyer explained that the decision, according to him, would be properly reflected when families seek justice for receiving therapy or medication.

“When I need something that is out of the list, the STJ sets some criteria, with the exception of the beneficiary continuing to have access to out-of-list treatment. What are these criteria? It is on the list, but it was not effective for treatment. What I need is not on the list, there is nothing on the list that can cure the disease, but what I need is off the list. “

Adriano Barbosa is a lawyer with a bachelor’s degree in Civil Procedural Law. According to him, one possibility in the face of the decision is that people who are in the process, or who want to sue in a situation involving a lack of coverage, may have to amend the contract.

“It is possible that those who are able to negotiate a contractual amendment with the health plan operator. This amendment will, obviously, imply higher costs. This amendment may provide coverage of the procedure, in consultation with the health plan operator. That’s the decent thing to do, and it should end there. “

According to the lawyer, in the case of those who have a preliminary decision for access to medical treatment or medication, STJ’s decision does not mean that the orders will be revoked.

“It will depend on each specific case. Before people get frustrated, it’s important to find your lawyer.” […] Each case must be treated in a special and unique way. ”

  • Health plan users fear losing the procedure after the STJ decision

Which method loses plan coverage?

The role of ANS is fundamental and does not include many treatments, such as recently approved drugs, certain types of oral chemotherapy and radiotherapy, and surgery including robotic techniques. Plans are exempt from the obligation to pay for these treatments once the list is complete.

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

Many patients require longer sessions than scheduled to achieve results with this therapy, so in the current model, they are approved to pay by the health plan.

STJ understands that the list, although complete, acknowledges some exceptions, such as the therapies explicitly recommended by the Federal Council of Medicine (CFM), cancer treatments and “off-label” drugs (used for treatment with a medical prescription that is not in the package). Insert for that drug).

If there is no therapeutic option or the ANS-listed procedures are exhausted, coverage for out-of-roster treatment may be provided by the attending physician or dentist.

For this, however, it is necessary that:

  • The inclusion of treatment in the ANS list was not explicitly denied;
  • There is evidence of efficacy in the light of evidence-based medicine;
  • There are recommendations from nationally renowned technology companies and foreigners, such as Conitech and Netizas;
  • Conversations are held between magistrates and experts, including the commission responsible for updating the ANS list, when possible, to address the absence of this treatment in the list of procedures.

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