"It's a crime to have us like that" - La Provincia
"My son is scared." When the doctor told him the other day that he was going to admit him, he said that it was not life and that he wanted to die. "To digest all this is very hard, first for him and then for the rest of the family. suffer someone you love so much ... " The voice is choked to Angeles Aguilar, which recognizes being "very worn out" by a struggle that began three years ago: that of getting public authorities to finance the Orkambi, the drug indicated to treat the symptoms of cystic fibrosis, the chronic disease suffered by his son, aged 12.
The approval unanimously, two months ago, of a Proposition No of Law in the Parliament of the Canary Islands, through which, among other resolutions, the Regional government to finance the medicine, it opened a door to hope. However, that loophole closed after a meeting last week with the Health Minister, José Manuel Baltar, that derived the possible solution to the Central Government and that this one is the one that includes in the General Budgets of the State a game for the Orkambi. "In all this time that we lose, our children are in danger, we need that medication already, it's a crime to have them like that," says Ángeles Aguilar.
A hard day to day
Meanwhile, the disease is progressing. "Now he is treated with corticosteroids, with the risk that it implies because it produces a long-term deterioration of the pancreas," explains Angeles, a nurse by profession, who recognizes in a subdued voice that "he has gotten worse, is more tired, breathes worse and is missing a lot. to class, day by day it revolves around him and, between tests, consultations and the treatment, which is very heavy, it becomes complicated ".
Last September, the Ministry of Health confirmed its refusal to finance the Orkambi, after a report issued by the Spanish Agency of Medicines and Pharmaceutical Products and after not having reached an agreement with the Vertex company about the price of the drug, despite having been authorized by the European Medicines Agency for more than two years and despite being covered in several European countries.
A disagreement difficult to understand, given that "they have had time to negotiate or to denounce and what we have seen is that they have been denied for three years, they (the Government and Vertex) have not agreed and those who are paying are us and our children, says Angeles, stressing that "we knew that the road was going to be complicated, but what we did not expect is the lack of response that people who we have voted and are dependent on are giving us."
The complaint, last resort
All that situation has led to Angeles Aguilar to make the decision to report before the Public Prosecutor's Office to the Ministry of Health, since "I have no choice but to demand that the laws be complied with", something for which "I should not be begging". His intention is "to wait a few prudential days for the central government to respond", after the Patient Advocate contacted her and, "if there is not, I go ahead with everything."
Cystic fibrosis is a serious degenerative disease that affects one in 5,000 births in Spain. The life expectancy of those suffering from this pathology is 40 years, unlike sixty years ago, when it was unlikely that they would reach five years, despite which medications like Orkambi they can favor the quality of life of those affected.
In spite of all this, the solution continues without arriving. "In the face of such an urgent matter, we should take the telephone to solve it, it is a right that our children have and it is urgent to ask for the competent authorities," she concludes, tired but refusing to surrender in a struggle as unequal as fair and necessary.
