Dubai, UAE: The financial costs incurred by the healthcare system in the UAE to treat thalassaemia are increasing despite measures such as screenings, charity funding, and awareness campaigns.
Experts in the field attribute the increase to ageing thalassaemia patients who suffer complications and the growing number of patients.
According to the Dubai Health Authority (DHA), one in 12 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.
For thalassaemia management, patients undergo regular blood transfusion combined with well-monitored chelation therapy for removal of excess iron from the body caused by the transfusion. Thalassemia patients can develop complications with age including those of the spleen, bones, heart, and hormones.
The premarital screening programme has been in implementation since 2008 under the UAE Ministry of Health and since 2011 under the Health Authority Abu Dhabi (Haad). The screening through a blood test detects carriers of the disease and assesses the risk of having children affected by the disorder.
In July this year, the Ministry introduced a mandatory nationwide newborn programme for screening thalassaemia.
Apart from screenings, the local charity Beit Al Khair Society together with the Dubai Health Authority (DHA) set up in April the “Help” campaign to facilitate fundraising, awareness drives and education.
Against this background of various attempts to tackle low awareness level towards the genetic disorder, the Thalassemia International Federation (TIF) hosted for the first time in the UAE, the Thalassemia International Federation World Congress (TIF 2013).
The four-day Congress opened at the Abu Dhabi National Exhibition Centre on Sunday with a focus on prevention, management and care of thalassaemia and other blood diseases.
The Congress encourages parents to understand that the blood disorder is manageable with treatment and that it shouldn’t hold social stigmas.
The study titled “Premarital screening programmes” published in the Journal of Medical Screening, states that effective prevention can maximise the available resources if it is instituted properly, preventing up to 95 per cent of affected births.
Speaking to Gulf News on the challenges faced by thalassaemia patients in the UAE, Dr Essam Dohair, outreach co-ordinator at the Dubai Thalassaemia Centre and Medical Adviser for the Emirates Thalassemia Society that assists patients suffering from the disease, said that premarital testing doesn’t always have the best outcome.
He said, “Though the federal law of 2006 makes pre-marital testing mandatory for genetic diseases, the law doesn’t prevent the marriage of a couple who carries the thalassaemia gene.”
He explained that a couple after being told that one or both of them are carriers may find it unacceptable due to cultural or religious factors to stop the marriage.
“Majority of the couples get tested too late – a few days before the marriage,” he said.
He added that even if couples are carriers, they not only go ahead with the marriage, but have children despite the possibility of having children with the same disorder.
Dr Dohair emphasised the importance of educating couples on the implication of being a “carrier”, especially in the UAE where consanguineous marriages or marriages of blood relatives, are common, resulting in a high incidence of genetic disorders.
In an earlier in interview with Gulf News, Dr Khawla Belhoul, consultant physician and director of the Thalassaemia Centre at the DHA, said that cost of treatment can vary depending on the age and complications with adult patients requiring more medical care. Patients usually need regular blood transfusion — every three to four weeks.
“The only cure is bone marrow transplantation 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.
To offer perspective on thalassaemia patients, Shakeela Bashir, administration in-charge from the Emirates Thalassaemia Society in Dubai, told Gulf News that government hospitals are operating at near-full capacity in thalassaemia treatments.
“Most of the patients, including myself, have been receiving treatment at government hospitals. New patients, however, are being asked to seek treatment at private hospitals where they are required to pay,” she said.
© Gulf NewsOct 2013