The High Price of Rare Diseases in Mexico Alberto Valderrabano - The News
go to original June 21, 2015

Rare diseases are little known in Mexico. However, those who suffer from them experience an ordeal which is worsened due to the difficulty of treatment, that in many cases have no remedy.

“Rare” or “orphan” diseases are those which contain pathogens practically unknown to both citizens and the medical community, and often even to the health authorities.

Despite a very low frequency, the cost of the treatments can be very high and can last a long time.

One example is a disease known as Hunter syndrome, for which annual treatment costs approximately $375,000, equivalent to about 5 million pesos.

This syndrome is hereditary and affects a large number of people. It causes a number of negative symptoms, including aggressive behavior, hyperactivity, mental deterioration, coarse facial features, macrocephaly, hearing loss and stiff joints, among others.

However, Hunter syndrome is not the only rare disease present in Mexico: the list also includes Gaucher disease, Williams syndrome, Fabry disease, fragile X syndrome and Rett syndrome. These maladies can cause serious physical and emotional damage, and often has a negative impact on the sufferer’s family environment.

Another rare disease identified in Mexico by the national health sector is the PNH virus, which causes a disorder in which the immune system destroys red blood cells during the night. The drug used to treat the infection, Soliris, costs $409,000 per year, or more than 6 million pesos.

Another case, known as metabolic disease, requires treatment with a drug known as Naglazyme, which costs sufferers around $350,000 a year.

A similar amount is needed to treat hereditary angioedema, whose symptoms include severe and painful attacks of swelling in any part of the body, for which Cinryze is used.

Read the rest at The News

We invite you to add your charity or supporting organizations' news stories and coming events to PVAngels so we can share them with the world. Do it now!