Brazilian Children Over 7 and Their Families Demand Elevidys Gene Therapy from Anvisa

Elevidys was approved for the treatment of ambulatory children aged four through seven years in Brazil. So what will children over 7 years old who can still walk and nonambulatory children who will benefit from treatment do? We share the concerns of Brazilian families.

ELEVIDYS, the only currently approved gene therapy for DMD, is approved in Brazil for children ages 4 to 7. However, according to the decision of the Brazilian Health Regulatory Agency (Anvisa), children over the age of 7 will not be able to benefit from this gene therapy.

We invite the Brazilian Health Regulatory Agency (Anvisa) authorities to turn back from this big mistake. All children with DMD over the age of 7 who can still walk and nonambulatory children who will benefit from treatment should have access to gene therapy.

DMD patients over the age of 7 are asking the Brazilian Health Regulatory Agency (Anvisa) not to take away their right to life and to reconsider the decision. [Read More: In Brazil, the Government is Expected to Implement a Risk-Sharing Model with Roche for ELEVIDYS]

Anvisa’s Age Criteria Is Not Correct

All Brazilian children who can still walk and nonambulatory children who will benefit from treatment should be able to receive Elevidys gene therapy.

The location and number of deleted exons in Duchenne muscular dystrophy affects each child differently. It is not right to take away the rights of children to gene therapy based solely on their age.

We call on the Brazilian Ministry of Health to reconsider the decisions.

DMD Warrior supports Brazilian children.

Learn More: The impact of Exons on Age at Loss of Ambulation in Individuals with Duchenne: A single-center study of 555 patients

2 COMMENTS

  1. Meu filho Eduardo CLAMA POR VIDA E POSSUI O MESMO DIREITO DO QUE AS DEMAIS CRIANÇAS.
    SE O MÉDICO RECEITOU O ELEVIDYS É PORQUE ELE Pesquisou, VIU OS MENINOS NOS EUA. PORTANTO, Somente Ele TEM ESSE PODER DE DIZER QUEM PODE E QUEM NÃO PODE RECEBER O ELEVIDYS. É SIMPLES ASSIM. .

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