"I was diagnosed 18 years ago with Paroxysmal Nocturnal Hemoglobinuria (PNH), a so-called rare disease that causes me severe pain, fatigue, bleeding, infections, difficulty swallowing and breathing, and, above all, a great fear of suffering a thrombotic episode, which is usually fatal.
As if the suffering inherent in the disease were not enough, the Ministry of Health of the Canary Islands Government has just given me a letter in which, "sincerely regretting the inconvenience caused," they definitively deny me access to the only treatment that can stop the progression of my disease and reduce the risk of mortality.
Although my doctor has requested it three times from the Canary Islands Ministry of Health, they have simply turned a deaf ear and played with me for the last few months. They argue, against the opinion of the doctors, that the drug has not proven its effectiveness in patients who have not received transfusions in recent months. I am not receiving them now not because I do not need them, but because my body no longer assimilates them. So I need urgent help.
In addition, I believe that there must be another reason why they deny me treatment, since in other Spanish communities there are patients who have not received transfusions either and who are being successfully treated with this medication. It must be that there they understand that this is our last hope.
The Ministry of Health of the Government of the Canary Islands abandons patients with rare diseases. This is my case or that of little Aynara, who suffers from mucopolysaccharidosis and is forced to travel constantly to Barcelona to receive the treatment there that they deny her here.
And I wonder: why in Catalonia, Madrid, Andalusia or Valencia or many other communities is the treatment offered and in the Canary Islands it is not? While we do not receive an answer, we will continue waiting or traveling to other regions where they do offer us an opportunity."
