It is definitely the primary time you’ve heard the phrase Mexiletina. It didn’t sound acquainted to Manuel both once they prescribed it to his son after detecting non-dystrophic congenital myotonia, a uncommon illness that seized his muscle groups and that often seems after the age of 30 and that his son has suffered from for the reason that age of 4.
Before this drug, the infant may barely climb stairs and if he ran he would at all times fall. But with remedy the illness started to remit. Little Manuel recovered his mobility as much as 95% once more. “He is now a cheerful baby,” says his father, “he likes to play sports activities so much, one thing he could not do earlier than.”
All because of the remedy they have been prescribed within the Neuropediatrics Unit of the Virgen Macarena Hospital in Seville. Since mexiletine was not marketed in Spain, the Ministry of Health imported it for them. “I believe they introduced it from Canada,” says Manuel Pérez, “they prescribed it to us, we requested it from the district pharmacy and, upon fee, they delivered it to us.”
an inaccessible worth
So far the story had a cheerful ending, however every little thing has simply modified for this household from Real de la Jara, in Seville. For months, its element has begun to be marketed in Spain underneath the identify of Namuscla and due to this fact the Ministry of Health now now not imports it from overseas. “It doesn’t subsidize it both,” says Manuel, “as a result of it’s nonetheless in a trial interval in our nation.”
The consequence is that its worth has multiplied by 100. “We paid 16 euros for the three-month remedy,” says Manuel. Now every field prices 1,639 euros and “my son wants one field every week,” explains his father. In complete, 20,000 euros for a remedy that beforehand value solely 16.
Image of the marketing campaign “Everyone with Manuel” NIUS
Not even with a month’s wage, Manuel can afford a field. “They have ruined the happiness of a kid and his household,” laments Manuel, “and in addition the sumptuous analysis work and dedication of his medical workforce.” Now his docs are testing a brand new remedy with Manuel, this time for epilepsy.
“We are progressively altering it,” says his father. Since final Friday, half of the remedy continues to be the outdated one and the opposite half, the brand new one. “In simply 4 days the muscle pains have returned,” Manuel explains, “and it even reveals in his speech.”
all with Manuel
Since then, his household has not stopped protesting. They ask that the brand new drugs even be financed by Social Security in order that their son can proceed the remedy he was receiving, “like the remainder of the sufferers who’re benefiting from it,” explains Manuel.
The household, with the assist of their son’s college, has began a group of signatures. Meanwhile, at dwelling they spend the day writing letters asking for assist. They have despatched them to Moncloa and in addition to the Ministry of Health, however they haven’t obtained any response. The Ministry has not but responded to NIUS’s questions concerning the case. The one who has returned his letter to Manuel’s household has been the Royal House, with a message of encouragement for his son and the dedication to switch his request to the Ministry of Health.
Manuel is just 12 years outdated, however he’s already conscious of what’s occurring. “He understands it,” says his father, “however he retains quiet in order to not trouble.” Always prudent, he barely complains, however his dad and mom know properly when ache threatens him. They have lived with this illness for nearly ten years and they don’t need to see it once more.