The days of waiting and anguish are over for Agustin Cordenos Garces and his family, as this Saturday a four-year-old child received his medicine imported from the United States for treatment. achondroplegia, Its cost is about 30 thousand dollars per month.
Achondroplasia is the most common form of dwarfism. This means that the person has a bone disorder of chromosomal originThat is, all long bones are shortened symmetrically. In these cases, the length of the spine is normal, which causes disproportionate growth of the body.
“We are very happy. The wait was getting too long because almost two months have passed since the verdict,” he says. bugle The child’s father, Pablo Andres Cordenos (36).
And he hopefully clarifies: “From Monday they’ll be giving Agus injections in the city of Cordoba, we’ll be there for a week and then we’ll start giving them at home.”
Augustine lives in Canals, Cordoba. The medicine that you will start using every day is called vosorticidal And its business name is Voxzogo. It helps in stimulating the growth of the bones affected by the disease.
Agustín Cordenos Garces is three years old and suffers from achondroplasia. The justice authorized a drug to treat him.
Agustin will have to inject himself until growth plates off, something that usually occurs in men between the ages of 17 and 18. They are imported under the exception access regime for unregistered drugs provided by ANMAT.
“we are fighting ANMAT has approved this drug in our countrySo other kids can access it without going through the legal process,” he says. And he says there are already 30 families claiming the drug, and they have to go through a legal process to get it .
Faced with the impossibility of not being able to pay for treatment, last December, Pablo began a trial before justice. The Court of First Instance ruled that the cost of the injection would be borne by the Ministry of Health and the Superintendent of Health 50% and half of the Social Work and Prepaid.
But the decision was not final and the Federal Chamber of Córdoba decided that the Ministry of Health takes charge of the purchase of the drug and then coordinates the social work and part of the refund by prepaid.
“few days back definite sentence Where justice mandates that 90% of the cost of the remedy be paid for by the state, 5% by social work and the other 5% prepaid”, explains Pablo.
Just last year, the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA) Approved the use of this drug To treat children with pathology.
“In the European Union it is approved to be administered from age two and in the United States from age five. And there are studies that now seek to demonstrate its effectiveness from the first months of life,” Cordenos said. Told this newspaper two months ago
On that occasion the boy’s father clarified that Don’t know long term effects Because the approval of the drug is recent. And he explained: “It is likely that this contributes to the prevention of associated malformations such as cervical stenosis (vertebral narrowing), for which we already had to operate on the agus once every 10 months.”
There was another case in Mendoza of a six-year-old girl who had also received medication for achondroplasia. Civil Judge Marcela Ruiz Diaz ruled in favor of the family and ordered their prepaid pharmaceutical company to cover 100% of the cost.
The import of the remedy should be immediate because the magistrate took into account that achondroplasia causes a disability that worsens over the years and affects quality of life.
Achondroplasia in both children is caused by change in genetic information It receives growth factor receptor from fibroblasts, the cells that develop bone lengthwise.
one who produces a pathology in the development of cartilage, with accelerated calcification that inhibits normal bone growth. People with this deformity have a normal-sized torso, short limbs, and a slightly larger head.
appears as spontaneous mutation, which incidentally happens every 20,000 births. About 90% of children with achondroplasia do not have relatives with pathology. In turn, achondroplasia usually causes recurrent otitis, spinal problems, leg sprains and apnea.
Life expectancy and IQ of people with pathology they are similar to normal sized people, However, children with this problem often have slow motor development as infants because of their body proportions.