After a decade of struggle by parents and after two court rulings in favor of the children, the Ministry of Public Health (MSP) of Ecuador acquired the medicine that will allow children with Laron syndrome can grow. The application of the doses has been carried out since the end of 2020 and children are beginning to see the first results, however, there are still concerns from parents about the actions of the MSP.
Laron Syndrome is a very rare disorder. There are 350 cases in the world. However, Ecuador has a third of the patients worldwide. The figures show that 9 out of 10 children in the world with this disorder are Ecuadorian children, this is equivalent to 90% of the world's pediatric population with this syndrome.
When a person has Laron, their body doesn't capture the growth hormone it produces and therefore stops growing. Therefore, an 11-year-old can be as tall as a 3-year-old.
Although Laron syndrome is rare, there is only one medicine in the world that allows children with this disorder to grow up. The medicine is called Increlex and is produced by the French pharmaceutical company IPSEN.
Increlex is an orphan drug, which means it is not available in pharmacies. In addition, if it were possible to buy the medicine, the parents would need around USD 3,000 per month, not counting other medical expenses. For this reason, the parents asked the State to be in charge of buying, importing and supplying the medicine for their children.
The parents filed their petition in court and obtained two favorable rulings. The first was issued by the Second Court of Criminal Guarantees of Pichincha, in 2010. The second corresponds to a ruling of the Constitutional Court of Ecuador, in 2016 that ordered the Ministry to buy the medicine and supply it within 90 days. However, the purchase was only finalized in 2020.
The first results
Since late 2020, children with Laron began receiving Increlex treatment. The medicine is supplied in two daily doses through a subcutaneous injection, that is, it is applied to the fatty tissue, just under the skin.
Patricia Aguirre, is the mother of a girl and a boy with Laron. She and her family live in Loja, a city located in the south of the country, 12 hours from Quito, and whose province bears the same name. Loja is one of the places where Laron has the highest incidence. El Oro, a province located to the south of the coastal region, also has several cases.
Both of Patricia's children receive the treatment and, according to her account, neither have experienced any serious side effects.
According to what the doctors have explained to them, the most common side effect of the medicine is hypoglycemia, which would commonly be known as a “low blood sugar”, this causes headaches or dizziness, but it is solved by "injecting them after they have eaten or giving them some sweet", explains Patricia.
When asked about the results of the medicine, Patricia replies that they are going “slowly but well”. In her case, she observes that her children are more "chubby" and that her faces have a different texture. His eldest son, for example, has grown 6 centimeters since he began treatment, making him approximately 85 centimeters tall. Patricia says that she can see the growth of her children in the increase in clothing and shoe sizes.
Mariela Guadamud is the mother of a child with Laron syndrome. They live in Guayaquil, the city considered the commercial capital of Ecuador. Only two cases of children with Laron have been registered in that place, one of them is Mariela's son, who had to suspend treatment due to the side effects it caused.
After a month and a half of applying Increlex, Mariela began to notice some problems in her son's eyes. She took him to a doctor's appointment and they stopped the Increlex treatment. Now her son has mild myopia and, despite what she has experienced, Mariela hopes that the Ministry of Health will continue to supply the medicine for her son.
In that month and a half of applying the medicine, Mariela's son grew 2 centimeters, from 87 to 89 centimeters. Despite the fact that the medicine has not been given again for six months, Mariela's son continues to grow and now measures 92.5 centimeters.
These results have encouraged Mariela, who sees her son happier. The mother says that now her son can more easily do things that are common for other children, such as riding a bicycle or sitting at the same table with her parents for dinner .
According to the Increlex instructions, a child or adolescent receiving the medicine could grow up to 1.5 meters. Which would allow them to have a life with fewer complications.
Mariela says that the dose that was applied to her son was incorrect and that is why he suffered side effects, explained the Ecuadorian expert with whom she took her son for a consultation.
Like all medicines, Increlex has side effects. Although, as Jaime Guevara, the endocrinologist who has studied the syndrome for more than 30 years and whose studies helped develop the medicine, has explained on several occasions, if Increlex is applied in the correct dose according to the case , there should be no serious side effects.
Guevara, in various reports for local media, has explained that the Ministry should individualize the cases of children with Laron to provide them with the medicine in the amounts they need. The endocrinologist developed a protocol for the supply of medicine and has shown itself willing to collaborate with the Ministry of Health, however, it has not been taken into account. This despite the fact that the 2016 ruling in favor of the children with Laron orders the Ministry to apply the protocol prepared by the expert.
Worries
Patricia and Mariela have some concerns. The first has to do with the constancy of the medicine. The doses that the MSP bought are about to expire in September of this year. However, according to what they have been informed, the institution has already bought the second batch of Increlex, which guarantees several months of medicine.
In the case of Mariela, her concern is that her son will be left off the list of beneficiaries due to the adverse side effects he presented. According to her, she told Infobae, on July 8, her son will have a new consultation with the doctors from the Ministry, there the consequences of the medicine will be determined to prepare a report and find out if the child can resume treatment.
For her part, Patricia indicates that several parents are concerned about the lack of coordination of the MSP zones. “Some of them have asked us for more tests than others, some children's doses were increased the first month, others were not. Some are reviewed every six months and some are not”, says Patricia.
The fight continues
The parents of the children, thanks to the support of the legal office of the University of San Francisco de Quito, have taken their case to the Inter-American Court of Human Rights. Now they have two petitions: the first is that the doctor Jaime Guevara train the doctors of the Ministry of Health on the syndrome and the application of the medicine according to the protocol that he elaborated. The second request has to do with reparation by the State to the children who could not receive the medicine due to the delay in complying with the sentences by the MSP.
The medicine can only be taken while the body is growing, between the ages of 2 and 18, or while the cartilage is “open.” However, many of the children who were 11 years old in the first lawsuit, as of 2020 – when the MSP bought the medicine – were already 21 years old and, therefore, could not access the only medicine that could change their lives.
The data
The investigations carried out by Dr. Guevara for 22 years and where he analyzed 99 patients with Laron and their relatives, revealed that patients with the syndrome "have a lower incidence of diabetes and cancer", although they are more prone to to suffer from obesity.
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