UAE | Health
'Shocking' disparity in thalassaemia treatment
Patients with thalassaemia, a genetic blood disorder, in the UAE suffer from 'shocking' discrepancies in treatment and resources, prompting a monitoring group of doctors, patients and activists to call for a unified standard of treatment.
- By Nina Muslim, Staff Reporter
- Published: 00:00 May 1, 2007
Dubai: Patients with thalassaemia, a genetic blood disorder, in the UAE suffer from 'shocking' discrepancies in treatment and resources, prompting a monitoring group of doctors, patients and activists to call for a unified standard of treatment.
Participants of the UAE's Tour of Hope project came out with 13 recommendations, including a unified prevention and treatment programme and clarification on therapeutic abortion, based on what they discovered during their week-long tour of thalassaemia facilities in all seven emirates, which ended on Friday. The blood disorder is characterised by the breakdown of oxygen-rich red blood cells.
Saeed Jafar Al Awadi, thalassaemia patient and board member of the Emirates Thalassaemia Society (ETS), told Gulf News that there were marked differences in treatment protocols depending on where one went.
Lack of facilities
"It was shocking. They are using treatment from 20 years ago. We should not see this in the UAE. We are a rich country, [but it seems like] our charity is going outside the country and not inside for our people," he said.
He said the group found, through interviews with patients and staff, that treatment at some hospitals in the northern emirates, comprising Fujairah, Ras Al Khaimah, Ajman, Umm Al Quwain and Sharjah, under the Ministry of Health was marred by the lack of resources and facilities for thalassaemia patients.
The problems include bed shortages during blood transfusions, blood shortages, insufficient iron chelation pumps, which remove excess iron from the blood due to the frequent blood transfusions, and Exjade - the oral medication alternative to pumps. Al Awadi said the group found one family with three thalassaemia sufferers and only one iron chelation pump. "They rotate using the pump every eight to ten hours," he said, adding that the ETS has promised to provide some pumps to needy patients.
Whereas in Abu Dhabi and Al Ain, Al Awadi said the services and treatment were slightly better, although the standard of treatment was significantly different from Dubai's specialised thalassaemia centre.
Supply: Ministry denies shortage of blood
The Ministry of Health denied there was a shortage of blood, but admitted that supplies might run out due to unforeseen patient demand.
"We do not have a shortage of blood and the priority for the blood is for thalassaemia and emergencies. But [when unregistered patients come unannounced for treatment] we have to postpone transfusion for others until we get new supply from Sharjah," said Dr Ameen Al Amiri, assistant undersecretary for blood transfusion and research services at the Ministry of Health.
He added that hospitals could not overstock blood supplies for thalassaemia patients as the blood has special storage and usage requirements.
Dr Abdul Gaffar Al Hawi, assistant undersecretary for curative medicine at the ministry, told Gulf News that they were working with the Dubai and ETS on a unified treatment protocol for thalassaemia patients in the UAE.
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