Rare Diseases Neglected

There are no exact statistics as to how many people currently suffer from rare diseases in Iran and reliable data must be produced under the supervision of the ministry of health, Hamed Asghari, social and cultural deputy of the Rare Diseases Foundation said.

Global statistics indicate that in Europe 30 million people suffer from a rare disease and the same number is reported for America. Although affecting only a small percentage of the population, the types of rare diseases are highly diverse. The ratio of the number of people affected to different types of rare diseases is roughly 1 : 10 or 1 : 15, ISNA reported the official as saying.

The foundation is also trying to formulate a comprehensive genetic map for the prevention and diagnosis of rare diseases in Iran, Asghari said.

Main problems

Unfortunately, society disrespects and ostracizes those suffering from rare diseases. Financially also, such diseases are a huge burden for families whose big concern is: how long they can manage to cover the expenses, he said.

“Ninety percent of the mothers of children suffering from a rare disease are depressed and in 60% of the cases, the father is known to entirely abandon the family,” he noted. The financial aspects need to be addressed, he stressed. This can be done only by social groups, government executives, lawmakers, and of course physicians.

Expenses

Most rare diseases are terminal, but what can be done is to slow down the progress. Most insurance policies do not cover treatment of these diseases. Fortunately, the Iran Health Insurance Organization covers most of the expenses of related medications.

The official further said that “it mustn’t be simply assumed that the expenses of a rare disease are limited to medication. As an example, most of the affected also suffer from physical disabilities highlighting their need for other assistance aids such as wheelchairs.”

Authorities are aware of their responsibilities but extra attention needs to be given to rare diseases. Therefore, the government should introduce schemes which will further assist those suffering from rare diseases, the official stressed.