Nohelia does not move her legs, does not hover over the bed, or lift her head. A mutation in his system of the SMN1 gene, which calibrates the normal function of his motor neurons, has deconfigured his mobility and weakened his muscles. You need urgent medication, or else, very soon, a mechanical ventilator will take over your lungs (also muscles). The situation would not be so overwhelming if the required medication were not considered the most expensive in the world.
The 11-month-old girl, a Cuenca resident, was born with Spinal Muscular Atrophy (SMA), a rare disease that can be treated with drugs of stratospheric values, such as Zolgensma, whose cost reaches 2.1 million dollars, and is use in a single dose. It has other cheaper alternatives, but just as alarming for the pocket, such as Spinraza, which exceeds $ 80,000 per dose and is applied every four months for life.
The Spinal Muscular Atrophy Foundation of Ecuador has registered 21 cases of this disease since 2019, distributed in cities such as Cuenca, Quito, Guayaquil and Portoviejo. The way of the cross to access treatment is reflected in its figures: of the twenty cases, only three have obtained medication, says Tito Moya, president of the organization and one of those who was able to treat his daughter, after filing a process legal against the Ecuadorian health system.
“In 2019 we won the protection action for the Ministry of Health to take charge of the medication. But then, we had to pursue a non-compliance judgment because they did not give us the medicine. It was only in November 2020, a year later, that we began to receive it, ”says Moya.
For Nohelia’s parents, on the other hand, the outlook remains uncertain. Of the four types that the disease presents, she has type I, the most serious. Her parents, César Valderde and Adriana Bojorque, know that each day that passes is crucial to save their little girl’s life.
“The world collapsed when we found out what he had, even more so, because we know that with this type of illness few children reach two years, unless they receive medication,” says Valverde with a broken voice.
After unsuccessfully seeking treatment at the Ministry of Health and the Ecuadorian Social Security Institute (IESS), the parents of this little girl do not stop or lose hope. They rely on the will of the public to keep their daughter alive. Valverde, behind the phone, is excited to know that many people will be able to see his case and contribute. Hoping that they will call him, or that the Ecuadorian health system will be moved by Nohelia’s ailment, he pronounces her telephone number: “0995174518”.
A CRY FOR HELP WITHOUT AN ANSWER FROM THE GOVERNMENT
According to Tito Moya, president of the Spinal Muscular Atrophy Foundation, 15 days ago a letter was sent to the new Government of Ecuador so that the expensive medication required by these patients be included in the National Basic Medication Chart, but the response has been silence, assures the leader. Mariana Vera, who also has a son with SMA, agrees. “Neither the previous government nor this one have heard our pleas,” he laments.
Nohelia’s father, César, has also made requests to both the IESS and the Zonal Coordination of Health 7, to learn about the procedure for accessing his daughter’s treatment. However, until the publication of this report -assures the father of the family- several weeks have passed without a guide from the health authorities.
Vistazo also sought answers from the Ministry of Health on the management that is done to treat this type of disease, and how it is ensuring the quality of life of those affected. But according to the communication team of said portfolio, the data processing is still under management.
PROTECTIVE ACTION TO OBTAIN MEDICATION
Hernán Batallas, a constitutional lawyer, has taken the case of four children with Spinal Muscular Atrophy to legal proceedings. Of these, through the action of Protection Action, he managed to get two of them to receive the medication from the Ministry of Health, arguing a violation of the rights of these children. The other two are in the corresponding legal procedure, he assures.
“Through a Protection Action, any person can claim the respect and reparation of constitutional rights. So, the idea is for the children’s parents to claim that the comprehensive health network is not delivering the drugs they must to treat the disease, ”explains Batallas.
Among the problems that are evident for this procedure, he says, is the difficulty of getting a doctor from the public network to issue a medical prescription, which hinders the legal procedure, to demonstrate the need for the patient to require said medicine. “It is a bureaucratic question. There have been some cases in which doctors put off patients, “he says.
In Ecuador, three cases of children diagnosed with spinal muscular atrophy have been reported, a disease that is cured with the most expensive medicine in the world: https://t.co/4XcozyuTSP