Ecuadorian children with a strange syndrome fight a battle for the only medicine that allows them to grow

Increlex is the only medicine in the world that works to treat children with Laron syndrome.
Increlex is the only medicine in the world that works to treat children with Laron syndrome.

For 73 days, children with laron syndrome from Ecuador have not received the only medicine in the world that is used to treat their condition. The Ministry of Public Healthin charge of buying the drug, informed Infobae that They still do not have a date to deliver the doses. Meanwhile, the children fight against time and their parents desperately search for a solution.

Laron syndrome is a rare genetic condition that stuns people’s growth. Although the body of a person with Laron produces growth hormone, the receptor that must capture it for the person to grow has a genetic fault, so a patient with Laron has severe short stature. For example, a 10-year-old with Laron can be the height of a two-year-old do not have this condition.

In the world there are just over 300 cases, of these a third of the patients are in Ecuador. The pediatric population suffering from this syndrome is almost entirely Ecuadorian: 9 out of 10 children in the world with Laron are from Ecuador. Most of the cases are concentrated in the south of the country, in the provinces of Loja and El Oro.

The Increlex, produced by the French pharmaceutical company Ipsen, is the only drug that can treat the syndrome. For a decade, the parents of the children with Laron fought for the State to provide them with medicine, since purchasing it through a government institution was the only way to acquire it. Increlex is an orphan medicine, it only serves a few people and is not of commercial interest, which is why it is not sold in pharmacies in Ecuador.

The children with Laron fight against time. Increlex medicine can only be given while they are in the growth stage. Once the child outgrows that phase, the medicine stops having an effect. The Ministry of Public Health has two judicial sentences against him that force him to buy and deliver the medicine for the children. The first was issued in the Second Court of Criminal Guarantees of Pichincha, in 2010, 12 years ago. The second is from the Constitutional Court of Ecuador, in 2016. The children received the medication, for the first time, in 2020.

The Ministry has not bought the medicine

For this report, Infobae asked the Ministry of Health for an interview with an institutional spokesperson to find out the status of the Increlex purchase. The interview was not granted but the institution sent a document with information about the medicine. According to the entity, “as it is a new acquisition process to continue the treatment, it has been subject to documentary reviews and approvals from entities outside the Ministry of Public Health.” For this reason, there is no date for the purchase.

However, when reviewing the Public Purchases portal of Ecuador, Infobae showed that the only process carried out by the Ministry of Health this year happened between July 4 and 12. The procedure refers to the verification of the non-existence of national production or supply. This verification is required before contracting with foreign suppliers, according to the current Public Procurement regulations.

Among the documents that the institution presents is a market study for the definition of the reference budget. In the public access file, it is indicated that “you only have the offer of the manufacturer (abroad) to proceed with the direct import”. Communications between representatives of the Ipsen pharmaceutical company and officials of the Ministry of Health are also attached.

Emails from March 24 and April 11, 2022. Ipsen insists on knowing the progress of the process to guarantee the delivery of the medicine in May of this year.  (Taken from the Public Procurement Portal).
Emails from March 24 and April 11, 2022. Ipsen insists on knowing the progress of the process to guarantee the delivery of the medicine in May of this year. (Taken from the Public Procurement Portal).

In the thread where the officials of both entities exchange emails, it is observed that the last two communications are sent by a representative of Ipsen’s commercial operations department. in the mail, Ipsen insists that the Ministry of Health give them some comment or response on the progress of the process to ensure the delivery of the product in May 2022. These communications took place on March 24 and April 11 of this year. In the public document, it is noted that the Ministry did not respond to Ipsen’s questions to guarantee the purchase.

The emails also reveal that the Ministry of Health knew that it had to acquire the medicine in May of this year so that the treatment does not stop. In a communication dated March 4, 2022, A specialist from the Ministry’s national directorate writes to Ipsen that “the first delivery would be needed this April or the second week of May 2022”, so that patients can continue treatment in June.

In March 2022, the Ministry of Health knew that it had to acquire the medicine for the children with Laron until May of this year.  (Taken from the Portal of Public Purchases of Ecuador).
In March 2022, the Ministry of Health knew that it had to acquire the medicine for the children with Laron until May of this year. (Taken from the Portal of Public Purchases of Ecuador).

The Ministry of Health, according to the documentation on the public procurement portal, seeks to acquire 480 vials of Increlex in two deliveries for a value of USD 292,800. This amount would cover the treatment of 17 patients.

Medicine gives children hope

Patricia Aguirre She is the mother of two children with Laron. Her son is 14 years old and her daughter is 7. Before they were given the medicine, they grew 2 centimeters a year. When receiving the treatment, of two daily injections, the children grew 10 centimeters during the 12 months in which they were given the medicine. Her son started treatment at a height of 85 centimeters.

Aguirre fears that by not continuing with the treatment, the accelerated growth that her children have had will decrease and she opted for her children to play sports “to take advantage of what was left of the medicine in their bodies.” The mother says that her children did not experience any side effects.

The son of Mariela Guadamud He started treatment with a height of 87 centimeters. They administered the medicine for 45 days and the child presented side effects, so the application of the doses was suspended. After 14 months, Mariela’s son resumed treatment for another three months. In that short period in which he received the medicine, the boy grew 8 centimeters. His current height is 95.5 centimeters.

Guadamud says that the effect of the medicine on his son has not only allowed him to grow physically but has also improved his emotional state: “I was a bit wary of approaching older children. He feared that he would be rejected or not treated in the same way because he saw him as a smaller child. Now he is a child who develops, who plays with adults, with children, who rides his bicycle, or plays on his skateboard. It’s a total change”.

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