PESHAWAR: The government’s decision to end thalassaemia project will bring to complete halt the efforts carried out about research and awareness regarding this hereditary childhood ailment in the province.

The health department decided to launch Prevention of Thalassaemia Major Project, the first-ever initiative by any province in the country, in 2005 to eradicate the disease by scaling up awareness among people to prevent the most common genetic hemoglobin disorder.

Given the progress of the project, the then government had also announced to make it regular programme of the health department in view of the rapid spread of thalassaemia, relevant officials said.

The finance department had conveyed to the health department that it would not provide funds for the project after its end in June 2015, they said. “The government will not provide funds (for the project) and it will be closed from next financial year,” they said.

Officials said that the province had about 15,000 thalassaemia patients, who couldn’t survive even if they got regular blood transfusion. The only way was prevention, they said, adding that there was no treatment for the disease.

Paediatricians say KP needs to start a regular programme for prevention of the hereditary childhood ailment

“The only available treatment is bone marrow transplantation which costs Rs2 million and subsequent per month charges of Rs20,000,” officials said. They said that as 90 per cent children, affected by the disease, came from poor families, their parents couldn’t afford the treatment expenses.

Officials said that the project had become a ray of hope for the people. The project was aimed at reducing incidence of the disease through advocacy, reach and counselling, they added.

The government formally launched the project in 2006 to eliminate the main blood disorder through awareness and provide counselling to the unmarried carrier, prenatal diagnostic service to the carrier married couples and other measures to reduce cases from marriages between cousins, officials said.

It established links with national and international agencies working for prevention, diagnosis and treatment of thalassaemia and other genetic hemoglobin disorders. Eight per cent of the population of Khyber Pakhtunkhwa and Fata was carrier of thalassaemia minor, according to a report released by health department in 1992-93.

Under the project, more than 4,000 people were screened by senior hematologists. Last year, the project suffered a serious blow when the government abolished the posts of media consultant, nurses and technicians which adversely affected awareness efforts and diagnostic services.

The paediatricians say that the programme needs to be continued. “Other provinces replicated our programme and made good progress. Our government is terminating it,” they said.

The paediatricians say that termination of the project will consign into dustbin the progress and suggested its further strengthening like provision of vehicles for outreach visits to the areas where the disease exists so that the close relatives of the affected children can be screened.

Presently, the project officials visits basic health units and rural health centres only in Peshawar districts and can’t go the rest of the province owing to shortage of staff and resources.

“Without proper awareness at government’s level, we could not reduce incidence of thalassaemia. It should be made a regular programme and campaigns in the educational institutions and community level should be carried out,” the paediatricians say.

There is no arrangement for thalassaemia patients at the public sector’s hospitals due to which the patients are depended on the private blood transfusion centres.

“The province needs to start a regular programme for prevention of thalassaemia,” the health experts say.

Published in Dawn December 24th , 2014