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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We do not need a law for this. What we need is more and more awareness. The decision for two people with the blood disorder to marry or not is an emotional one, not something that can be addressed by a law.
The MPs are wasting public resources by continuing to bring unnecessary bills to the parliament. Why doesn't anyone have the guts to present a bill that strictly outlaws gangs and violence?!
All the MPs need to step down. None of them have the guts to do the work that's required of them!
@Mariyam : how can they present a bill like that when the majority of them would not hesitate to use the gangs or drugs or jail inmates to achieve their political objectives? Much simpler to fight about irrelevant stuff, and play their wonderful dramas to keep the natives entertained, especially when the natives do not hesitate to fall for all their antics?
@Mariyam : how can they present a bill like that when many of them would not hesitate to use the gangs or drugs or jail inmates to achieve their political objectives? Much simpler to fight about less relevant stuff, and play their wonderful dramas to keep the natives entertained, especially when the natives do not hesitate to fall for all their antics.
Agreed with SS. These bills are just to hide the negative activities these parties run to to keep people feel insecure all the time. Then get the 'ladies' of the parties to present sympathetic bills like this one. This is just a distraction from the truth.
A bill for each disease - is this going to be the work of DRP from now on?
I think Eva is right in her argument in this case, people are anemic just because of malnutrition and poverty. Probably most of these people are iron deficient. Before this bill it could have been better to bring a bill to provide free food for school children with good nutritional values.
Nihan need to read a bit about genetics before going on these issues. Its virtually impossible to prevent this kind of genetic situation.
What is important is to abolish thalassemia center and start treating thalassemics like other patients.
There may be a good reason why thalassemia is in that part of the world, probably Maldivian race survived from malaria is just because of thalassemia and people have less cardio vascular disease previously in Maldives , also because of high prevalence of thalassemia. Because current research claerly shows thalassemics have natural immunity for malaria and also they have less chances of heart diseases, except those who get regular transfusion and iron overload.
Just play around any natural system there can be consequences we dont understand.
Thalassemia is Allah's will. How can Majlis pass a Bill to control it?
This is simply ridiculous. I do agree that thalassemia is a disease that needs to be controlled and that more awareness is required. However, given the current economic and social climate of the country, I would say proposing such bills is just a waste of precious time. There are much more important social and economic issues which need to be addressed in the parliament. I would say that whoever proposed this proposed this simply for the sake of proposing something... just to do something 'different'.
This guy is NUTS!
Can not he see how this government at the least trying to give a better Health Care to the Maldives instead squandering peoples money and spending them only on medicals for family member welfare and medicals of most favoured peoples like Mahloof etc., etc., at Singapore or elsewhere as demanded!
These guys are incorrigible nor edible!
It would be better, if you earn your buck in proper fashion instead of stealing them and stop sending these BANANA bills into the parliament!
Atleast both parties seem to be discussing this intelligently somewhat for a change.
preventing thalassemia is important and we do not need a law for each disease. Why not make a broader health bill, much broader than what Eva is suggesting.
The point though, is, please do not create such a legalistic society in this country, especially with a pathetic and unqualified judiciary.
while I sympathize with Thalassemia patients and their families, I believe the Majilis should not overlook all the other disabled children. We have many cases of autism, down syndrome etc.
this bill should be part of a broader effort of improving the health care/ social services system as opposed to just focusing on Thallasemia.
can DRP also please table a birth control bill, an AIDS control bill and insanity control bill?
to begin with, previous madam nasreena discouraged thalassemic carriers marrying carriers, thus SPREADING the carriers all over. this was the exact OPPOSITE of what experts advised. do we honestly believe a piece of legislation can cure this now?
MPs, please take your jobs seriously and do a service for your nation. you just might be able to sleep a night in peace.
What exactly does this bill, if it becomes law, mandate to do?
my view on this
http://madeinmaldives.blogspot.com/2009/02/status-of-thalassemia-in-maldives.html
Mini, U R utterly absurd..
When ur house has a thalassemia child thn u wont think this bill is a waste of time..