Sunday, Apr 28, 2013
Dubai: The increasing health-care costs to treat thalassaemia patients in the UAE, especially among the adult population who develop complications with age, has prompted the local charity Beit Al Kher Society to set up a fund.
The Society has joined hands with the Dubai Health Authority (DHA). Both parties signed an agreement on Sunday to facilitates fund-raising, awareness drives and education under the ‘Help’ campaign.
For the first time, the Thalassaemia Centre that caters to more than 420 registered patients from the country will benefit from direct public funding.
The funds will be used to improve access to medication, medical care and prevention activities to reduce the number of newborns affected with thalassaemia.
According to the DHA, one in 12 people in the UAE carries the gene for thalassaemia, a blood disorder that reduces the number of normal blood cells in the body. If two carriers have children, the likelihood of each child developing the disease is 25 per cent.
The first leg of the Help campaign will begin with a five-day road show in Fujairah, Ras Al Khaimah and Abu Dhabi to raise awareness of the disorder and encourage residents to support the cause financially.
The road show, held in partnership with hospitality group Rotana, will roll out workshops, round table discussions, and entertainment activities involving patients, social workers, doctors and nurses.
Speaking to Gulf News, Engineer Eisa Al Maidour, Director-General of the DHA, explained that the goal of the campaign is eventual eradication.
He said health education about thalassaemia for patients as well as the general public is important if the country is to arrest the prevalence of the disorder. “We are sharing knowledge across patient, medical specialists and public platforms. The disease is genetic and can be prevented. The funds will be utilised according to patient needs,” he said.
Dr Khawla Belhoul, consultant physician and director of the Thalassaemia Centre at the DHA, told Gulf News that cost of treatment can vary depending on the age and complications — affecting the heart and liver — with adult patients requiring more medical care. Patients usually need regular blood transfusion — every three to four weeks.
“The only cure is bone marrow translation from a fully matched compatible donor, which can cost more than Dh300,000. In some patients, the cost can cross a million dirhams,” she said.
The financial costs incurred by the health-care system, she said, include screening, counselling and continuous medical care for patients with thalassaemia as well as providing services like premarital counselling and prenatal counselling during high-risk pregnancy.
“A decade ago, the Thalassaemia Centre required fewer funds. With an ageing population and increasing number of patients, we have higher financial costs,” said Dr Khawla.
Emirati patient Saeed Jaffar Al Awadi, 36, a member of the Thalassemia International Federation, told Gulf News, “As patients we need help from all sectors to support our treatment as well as raise awareness towards prevention and screening.”
In March, Beit Al Khair Society donated Dh50,000 to the Thalassaemia Centre to procure blood sugar testing machines for thalassaemia patients with diabetes.
By Carolina DSouza Staff Reporter
Gulf News 2013. All rights reserved.
