LAHORE - About 95 per cent work for saving Thalassaemia patients is being done by private sector.

Punjab Thalassaemia Prevention Programme (PTPP) was initiated in 2009 but by 2015 it could not deliver because of poor funding. No public department has official statistics of affected children.

As per unofficial figures over 6000 affected children are born annually and 17 born daily in Pakistan. These children require regular blood transfusions and chelation therapy to remove the excess iron from their bodies to stay alive.

Thalassaemia is the most common genetic disorder in Pakistan with a gene prevalence rate of around 6%. This translates that six out of every 100 Pakistanis carry this mutant gene. With a population of around 200 million, there are around 12 million people are healthy carriers of this gene. Thalassaemia is an autosomal recessive disease, and if two carriers get married to each other then they shall have a 1 in 4 chance (25%) of having an offspring with B-Thalassaemia Major in every pregnancy. Whereas bone marrow transplant which is the only permanent treatment currently available costs more than two million rupees. Currently, majority of the patients in Pakistan do not get adequate treatment. The current socio-economic condition of the country reveals that Pakistan, as a country may not be able to adequately treat all such patients.

Since there is no easily available cure for this disorder, the only hope lies in adopting a preventive programme on the line pursued by countries like Italy, Cyprus and Iran, which has resulted in either complete control of Thalassaemia Major or significant reduction in the prevalence of Thalassaemia Major in these countries. Therefore, the only viable solution for the government of Punjab is to have a provincial project that stresses preventive strategies with continued support to the existing Thalassaemics.

The PTPP is providing the following services totally free of cost throughout the province of Punjab:Awarenes and training on Thalassaemia, screening of carriers (extended family screening), pre-marital screening for the general public, genetic counseling, pre-natal diagnosis and training & research.

The project head office is in Lahore with four regional centers situated at Sir Ganga Ram Hospital, Lahore (head office), Nishter Hospital Multan, Victoria Hospital Bahawalpur and Holy Family Hospital, Rawalpindi. Each of the regional centers are providing the following services:

Genetic Counseling, Blood collection, Carrier Testing, Prenatal Diagnosis, Result Feedback and Awareness.

Moreover, PTPP has also established a DNA Lab at Sir Ganga Ram Hospital, Lahore, which is the first public sector DNA lab providing free genetic testing and prenatal diagnosis services for Thalassaemia in the country.

Each of the 36 District of Punjab and are attached to respective regional centers and are proving the above mentioned services.  Health experts are of the view that a national Thalassaemia policy should be developed and existing Thalassaemics should be given optimal treatment services throughout the province/country.

Prevention remains the most important way of dealing with Thalassaemia in the country and should be the priority at the government. Legislation on mandatory premarital Thalassaemia screening should be implemented in Punjab. Since Punjab Health Minster Dr Yasmin Rashid is pioneer of anti-Thalassaemia drive, it is expected that the governemtn would take steps address the issue.