Joana Brauer, from Brasilia, mother of two children with severe hemophilia, feels the pain of her little ones during the traditional factor VIII replacement treatment, essential for those with the disease. “My son gets pierced four times a week,” he said. 
This Friday (24), she felt relieved when she heard from the Minister of Health, Alexandre Padilha, at an event at the Hemocentro in Brasília, that the government intends to expand, starting next month, the use of the drug Emicizumab for children up to six years of age with hemophilia. The medicine is now available for adults on the public network.
Benefits
Unlike traditional factor VIII therapy, which requires infusions into the veins, emicizumab is applied subcutaneously, in a less invasive way. The treatment, according to the ministry, would also reduce the frequency of people bleeding. Therapy would only be performed once a week. “This will bring autonomy and freedom to children and families.”
“Expanding the medication to children will bring an immeasurable transformation. Because we are not just talking about easier access because it is subcutaneous. We are talking about mothers and children actually being able to adhere to the treatment”, says Joana.
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Impact for families
The native of Brasilia, who is an activist for the rights of people with the disease, states that more than 80% of the caregivers of children with the disease are mothers. “The ministry’s position (to expand service with this medicine) will change the reality of these mothers.”
This includes the fact that, as he explains, there are mothers who have to give up their jobs because they have to go to the Blood Center. “It is also due to mothers who have children with other atypicalities, such as autism or neurodivergence, which makes venous access even more difficult.”
Advance
The Minister of Health, Alexandre Padilha, said that he will forward the request to the National Commission for the Incorporation of Technologies of the Unified Health System (Conitec) to deal with the expansion of the medicine to children.
“The medication is already in the SUS for those over six years old, from the moment some type of antibody that inhibits the use of factor VIII is identified. This will represent a very important advance for children and families.”
Padilha highlighted that if families had to pay for treatment with this medication for a year, they would spend R$300,000 to R$350,000 per year to administer the product.
“When we do this for the SUS, we are making a huge investment, which makes Brazil the largest country in the world to offer this for free through the SUS. We are generating dignity and comfort for children.”
