According to recent reports and estimates; Every year, between 5,000 to 8,000 Pakistani children are born with thalassaemia. More than half of these children are from Khyber Pukhtunkhwa.
On the occasion of World Thalassaemia Day, marked on 8th of May, young adults are inspired to get a Thalassaemia test before getting married. This emerging trend is more valuable and prudent than the customary wedding traditions. It is a positive step towards ensuring the health of the future generations, by making the Pakistani nation more aware of this serious health threat.
Currently the health sector is not maintaining any formal data registry on this disease. However, cautious estimates indicate that thalassaemia is a rapidly growing threat in the country. At present, nearly nine million children are suffering from the disease.
Experts state that; In order to mitigate the national health concerns, we must begin a nationwide movement to encourage more and more young couples to get screened for hereditary traces of diseases, like; HIV and thalassaemia, so that our future generations are not put through the pain and misery of frequent hospital trips and unhappy, abnormal lives.
A recent report stated that; Taking into account the prevalence of inter-family marriages in Pakistan, there is a dire need for more awareness on thalassaemia and other inheritable diseases. Inter-family marriages contribute to 44 per cent of thalassaemia cases. By taking preventative measures, adults have some power to ensure that a child is born in a good health condition.
By completing health tests prior to marriage or conception, couples can know whether their offspring might be born with a debilitating disease. This is not to say that couples — if tested positive for a transmittable disease — must not marry. Experts simply recommend that if they are married and decide they want a family, they can be referred to genetic counseling and offered alternative options, such as adoption.
The report further stated that; Future families can reduce their financial strains, by diagnostic testing, which allows them to be certain about the possible disease burdens. Screening and tests for some diseases are generally less costly than medical treatment for these conditions. For example, if a child is born with thalassaemia he would require frequent blood transfusions, on a monthly basis, which can be an expensive and tedious venture. Another point to consider is that if a child is born with the disease, his or her life expectancy might be much shorter, as thalassaemia may prohibit the patient to live beyond the age of 40 years.
Hereditary diseases testing can be facilitated by improving accessibility to preventive healthcare through the establishment of free clinics and testing centres. The Punjab Thalassaemia Prevention Programme is a good beginning, but it still needs to be expanded across the other provinces. The recently formed Thalassaemia Federation of Pakistan, comprises of an umbrella group of 44 groups which already-exist and work against thalassaemia. Such initiatives can help implement steps towards a healthier nation, through a continuous campaign and advocacy drive. Similarly, the provincial health departments in both urban and rural areas must work to facilitate testing for other hereditary diseases, such as HIV/AIDS. This prevention and treatment plan must include genetic counseling, which should be initiated at medical institutions across the country, including remote areas. As the Ministry of Health has begun a national AIDS control programme, this needs consistent follow-up drives and greater visibility across the provinces.
Introducing Risk-screening for pregnant women can be made mandatory. The AIDS control programme is a powerful initiative and if executed with cautious diligence, it can achieve the defined goals, and pave the way for other prevention programmes and interventions to be developed.
Till date, Sindh is the only province which has passed a legislation to fight thalassaemia. However, like with many other theoretical legislations, there is hardly any implementation. The province must ensure testing for commonly-known hereditary diseases, which afflict the Pakistani population prior to marriages. With careful family planning, couples can perform a social service and ease the welfare of the nation. Other provinces should follow suit and propose similar legislations to control various health problems, at the grassroots level, through blood and genetic testing. World Thalassaemia Day is now becoming a popular event through media interventions. It is a good start, however we must ensure the hereditary disease challenges are not taken lightly throughout the rest of the year.