Addressing Thalassaemia in the National Health Policy
Thalassaemia is a common genetic disorder in Bangladesh which requires lifelong regular blood transfusion at 2-4 weeks interval. Repeated blood transfusion results in toxic iron accumulation in the body, which in turn damages vital organs like heart, liver and pancreas. Therefore these patients require regular treatment with expensive iron chelating drugs. The overall treatment is burdensome, painful and destroys the economic prospect of an affected family.
Worldwide about 100,000 children are born with thalassaemia every year among which 90% of these births are in Asia. With the improvement of medical treatment and diagnosis more and more patient are detected and added in the existing patient pool. This huge number of patients is overloading the national blood transfusion service.
It is estimated that 60 percent of the nation's blood requirement is for the thalassaemia patients. According to Health Bulletin 2009, Thalassaemia was the tenth most common disease among 5-14 yrs old patients of government medical college hospitals of Bangladesh.
However, there are little or no facilities available addressing the needs of thalassaemia patients in the government health system. These inadequate treatment facilities have been multiplied by the lack of updated knowledge of the health service providers, poverty of the patients and lack of diagnostic facilities thus leads to far reaching problem for thalassaemia patients in the community.
The only way to combat this serious condition is prevention. The disease occurs only when both parents are thalassaemia carriers. By stopping thalassaemia carrier-carrier marriage we can easily prevent new thalassaemia birth. We could take the learning of Cyprus for example where the disease prevalence was drastically reduced with the implementation of integrated of awareness campaign and mass screening. It is necessary that government takes responsibility for such mass scale programme.
The first ever Health Policy of Bangladesh is going to be conceived soon. The government is working on the final draft of the policy. While going through the draft, we found no specific direction nor any focus made under the broad strategies for genetic disorders like Thalassaemia and Hemophilia. It was not even included in the detailed "Strategic Plan for Surveillance and Prevention of Non-Communicable Diseases in Bangladesh" by the health ministry.
The strategy 23 of the draft health policy addresses non communicable diseases however it only covers lifestyle and nutritional diseases like heart disease, cancer, diabetes, asthma, blindness etc. But the prevention and control of genetic diseases are completely different than the lifestyle and nutritional diseases which requires — awareness of people, premarital and antenatal screening, prenatal diagnosis, proper treatment of the existing patients and good laboratory service. Therefore a separate strategy must be adopted to properly address this overwhelming problem.
The writer is the Secretary General of Bangladesh Thalassaemia Foundation.(BTF).
E-mail: robin@thals.org
For all latest news, follow The Daily Star's Google News channel.
Comments