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Photography: Lukas Jara M.
For years, parents, grandparents, uncles and brothers have left their feet on the street, knocked a thousand doors and represented those who can not speak or speak. have the opportunity to mobilize. These parents are the voice of more than 150 children and adults who suffer from spinal muscular atrophy in Chile and who have not rested in the struggle for the state to comply with two fundamental constitutional rights, such as the right of life and health.
SMA is a disease of genetic origin that affects the part of the nervous system and is manifested by the progressive loss of muscle strength due to the involvement of motoneurons. Its incidence is 1 affected by all 6,000 or 10,000 inhabitants and is the leading cause of death of children under 2 years of age who have a type 1 pathology, the most aggressive.
Sandra Morales and Estefania Zapata are mothers of children with type 1 ADM, diagnosed in their first months of life. Both aged four years are connected to a mechanical ventilator and totally lose the mobility of their muscles
In the case of Estefania, doctors predicted Agustín's life for six months, claiming smiling that "there are already four". In this scenario and still a student, she remembers that after hearing the words of the specialist, she thought "if my son dies, I die with him"
Agustín and Estefania Zapata (Cedida)
A Morales , who is Accompanied by her husband, she has trouble remembering this day without moving and she is like her, as well as all the parents present, she affirmed that "I would like to give him all the best" . This sentence is related to having the resources to start the treatment that Alonso needs.
Spinraza: the light on the road
On December 23, 2017 the Sanitary Agency of the United States (FDA) approved Spinraza, Biogen Laboratory as the first drug for the diagnosed with SMA that will allow patients to develop more protein from motor neuron survival, slow down the progression of symptoms
This is Gloria Andrade's dream , mother of Felipe Cabrera, age 7, diagnosed with the SMA type 2, who sees in the drug the possibility that her son recovers the abilities that he had previously lost meet a year of age. "When we discovered that there was a drug, it was something indescribable because we know that their quality of life is going to improve, but the plane has dropped when we learned the price, it was terrible, "he said.
And the good news lasted until they learn that the value of a dose exceeds 80 million pesos and that children in their first year of treatment should receive six doses for to be effective, 500 million dollars. Starting in the second year, the price drops by half
At the beginning of the year, the drug entered the register of the Institute of Public Health which meant that the families could access it, the problem is that there is no pocket, no bingo, or a number of benefits that can afford it, that's why the parents and the caregivers organize to demand that the state be responsible for safeguarding the lives and the integrity of the children.
The responsibility of the state
The parents of Agustín Briceño, a 3-year-old boy diagnosed with ASM type 1, were the first to bring an action against the state for it to provide treatment to his son. After months of uncertainty, the Supreme Court accepted the 19459008 Protection Appeal and promptly ordered the purchase and supply of Spinraza by the system. public health.
Less than a month after its publication positive resolution in favor of little Agustín, two mothers from the Bío Bío region filed the same lawsuit in the Prison Appeal Court with the support of the Legal Aid Corporation.
The number of plaintiffs against the State will increase as 12 of the 16 families affected by the disease in the Region have organized themselves to carry out the judicial measures. According to them, is the only way to ensure that their children are treated equally and have access to health.
For this, they met with attorneys and MP Manuel Monsalve, who together elaborated itinerary of the steps to follow to achieve a dream that they fought for years.
Short-term measures
The first thing to do is to draw up a pilot plan for treatment. For this, it is necessary that a working table be established between the Ministry of Health and the families of persons diagnosed and that the amount of treatment be incorporated in the budget law ; the second is that the disease is part of the law Ricarte Soto, and the third is the claim for the refusal of treatment.
"The state has not produced a source of funding and what we want to achieve is having a public policy that allows us to use the drugs available to save the life of children, "says MP Manuel Monsalve
adding:" cut 90 billion pesos to public hospitals in the country, so the question is can we allocate 5 or 10 billion pesos in an annual pilot program to save the lives of children with the disease ?, I think, "he ponders
The work will begin on Monday, July 9 when parents meet with members of the Health Commission. In addition, The Bar Association of Concepción will be invited to sponsor legal proceedings
Family of Dean Jimenez Frits (Cedida).
Among those who attended the meeting of the Health Committee of Deputies is Dean Jimenez F rits, a 16-year-old boy with AME type 2, according to his mother, Cyntia Frits, the idea is that his son who has more ease to switch to type 1 who are prostrate and connected to a mechanical fan, can demonstrate to parliamentarians "their desire to live, who are the same as the rest of the children and who need access to treatment. Dean does not consider that he is ill, he is president of the high school student center and this perseverance conveys a lot of learning. "
The Spinraza is for parents a glimmer of hope to improve the quality of life of their children.They are aware that they will not be able to do many things even if they have the treatment, then their dreams are "to be able to disconnect it from the mechanical fan, to communicate, to sit," says Sandra Morales, mother of Alonso (AME1). 19659004] For all the legal measures are not only the door to access a drug, but start a new life, one without constant fear, one in which they can enjoy their children and hear them say: dads.
Alonso and his parents (Cedida).
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