A bill to control the recessive disease ‘thalasemia ‘ has been presented to the parliament.
The bill was presented to parliament by Dhivehi Rayyithunge Party (DRP) MP Visaam Ali.
Thalassemia is a recessive blood disease that can cause anemia, and the Maldives has the highest incidence of it in the world with 18 percent of the population thought to be carriers.
As a result, a large number number of families suffer from the consequences of the disease
DRP MP Ahmed Nihan said there were two main purposes of the bill.
”One is that the Maldives, relative to its small population, has a large number of thalassemia patients,” Nihan said. ”The the current government has been careless with thalassemia patients, so we need a law for this.”
Nihan said that the increasing number of thalassmia patients in the Maldives was “a serious social issue, which should be prevented for the future of the country.”
”The disease was first discovered in 1921, and Maldivians became aware of it after Madam Nasreena [wife of former president Maumoon Abdul Gayum] formed the ‘Society for Health Education’ and conducted awareness programs,” Nihan explained.
For a long time people were unaware of the disease, he said.
”Many lives have been lost due to the disease through a lack of awareness,” Nihan said, ” and yet there was no laws about it.”
He said that all the DRP MPs supported the bill, and congratulated MP Visaam for his work.
”I would like to take this opportunity would like to thank the police, NGOs and individuals who work really hard for the thalassemia patients,” he said.
Maldivian Democratic Party (MDP) MP Eva Abdulla said the bill should be more broader and comprehensive rather than focusing solely on for thalassemia.
”As thalassemia is a blood disorder, the bill could be broadened by making it a bill for other blood disorders,” Eva said. ”There are many blood disorders that are very common in the Maldives.”
Eva noted that 38 percent of females of reproductive age were affected by anemia while 50 percent had child anemia.
”We want the bill to be a bill for other blood disorders,” Eva said. ”The treatment policy in the bill was just the same policy used previously – awareness programs and screening.”
Eva suggested that prenatal diagnosis would be more effective to prevent the disease.
”The third thing we highlighted was to establish a hematology (blood) centre instead of a thalassemia centre,” she said, adding that all the suggestions would be incorporated in the committee stage and discussed.
”We want the bill to be broader,” she said.
Correction: This article formerly stated that 38% of women suffered from anemia, when it should have read 38% of women of reproductive age. Several translation errors have also been corrected.
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