Aasandha gives Thalassaemia children new hope

The parents of Thalassaemia children expressed concern and dismay when the Thalassaemia bill was returned to the Parliament by the President without ratification.

They complained that large sums of money had to be spent on the treatments for their children, and also that the available services to Thalassaemia patients in atolls other than Male’ were on the decline.

They have to travel to Male’ every time the need for treatment arose. However, just now they are feeling rather content; due to the fact that Aasandha will now cover all expenses necessary for the treatment of Thalassaemia patients.

The government has decided to include Thalassaemia patients in Aasandha, the new social health insurance program.

“Starting from today, the parents of Thalassaemia patients will not have to pay for obtaining the special treatments necessary for these patients. Everything will be included in the Aasandha insurance program,” the President said in his last weekly address on the radio.

“So, as I see it, there is no reason for the parents of Thalassaemia patients to worry. Everything relating to these kids will be taken care of by the government.”

“This is a huge relief. The government’s decision makes me, as well as all other parents like me, very happy,” said the father of a Thalassaemia patient.

He said that with this decision, a big weight is lifted off the shoulders of parents of Thalassaemia patients.

“We have to spend a lot on obtaining the blood. If Aasandha will cover all the costs, that means a huge weight is lifted off our shoulders,” he said.

The expenditures involved in taking care of a Thalassaemia patient are extremely high. Every blood transfusion requires a filter, which costs more than Rf 300. Some children need blood transfusions several times a month.

Groups involved in Thalassaemia issues say that the government’s decision to cover expenses for all treatments related to thalassaemia is great news, but if this means that less will be done to educate the public on Thalassaemia issues, it will not be so beneficial. The reason for this is that the Maldives has the highest incidence of Thalassaemia cases in the world.

Of the population of Maldives, 18.1 percent are Thalassaemia carriers. This means one in every five children born in the Maldives is a carrier, and one in every 120 children born is a Thalassaemia patient. One in every thirty marriages is between two Thalassaemia carriers.

The number of Thalassaemia patients born has increased in the past two years. In 2010, 22 children were registered as Thalassaemia patients, while the number rose to 31 in 2011.

Five children died of Thalassaemia in 2010 and four children died in 2011. More than 700 children are registered at the Centre as Thalassaemia patients, and 560 are actively seeking treatment.

“Even though Aasandha provides free treatment for Thalassaemia patients, there is no decrease in the disease itself. If these efforts are neglected as a result of Aasandha, the result will be very bad,” an individual working at the Centre said.

Fiunaz Waheed, who was involved in the passing of the Thalassaemia control bill, said that in the country’s current situation, both treatment for patients and efforts to prevent the disease are equally important.

“These days, the test of Thalassaemia is done by several couples as late as when it is time to “tailor the wedding dress”. By then, it is too late for the couple to part from each other. On average, about 31 new patients are registered yearly. Similarly, several children die due to the parents’ lack of information.

They die while the parents are trying to figure out what is wrong, whether HB level is going down or iron level is going up. This is a very serious problem,” Fiunaz, who works as a volunteer to help Thalassaemia patients, said.

Thus, subsequent to the introduction of Aasandha, efforts need to increase to educate the public on issues related to Thalassaemia.