Unsung heroes
“WHEN they tried to bury us alive, they did not know we were seeds.” This Mexican proverb aptly describes those professionals, civil servants, social workers and activists in Pakistan who fight back when the system tries to stifle their will to work for the country.
They don’t waste their energies in fighting the system: instead they form a niche of their own which satisfies their inner calling and leaves an impact. They don’t end up celebrities but to them it really does not matter — what matters is their mission.
In 1984 Dr Guido Lucarelli was successful in devising a cure for thalassaemia by performing a complete bone marrow transplant of patients. It was a complete cure, meaning that after being treated the patients were no more dependent on periodic blood transfusion.
Twenty years later, in 2004, a couple in Pakistan learnt that their daughter had thalassaemia. They did not get any substantial support from the local institutes working on the disease both in terms of facilities and the right attitude.
They went all the way to Florence, Italy to seek treatment from Dr Lawrence Faulkner who had learned the bone marrow transplant technique directly from Dr Guido Lucarelli. Eleven months there changed their lives and the life of their daughter but also, most importantly, the life of poor children suffering from thalassaemia in Pakistan.
There is hope for children with thalassaemia.
On their return, the mother of the cured child, being a physician herself persuaded the head of the Pakistan Institute of Medical Sciences (PIMS) to start a bone marrow transplant facility. He agreed to provide space as that was all he could do given the perpetual paucity of funds at our public-sector hospitals.
The acquired space, as well as a donation of 25,000 euros by an Italian couple who had lost two kids to thalassaemia, was utilised thriftily to establish Pakistan’s first public-sector bone marrow transplant centre in 2008.
The funds to run the facility are provided by an NGO and the Italian government under the Pakistani Italian Debt-for-development Swap Agreement programme. As of now the PC1 is on the verge of approval and the project will be taken over by the government early next year.
The thalassaemic child’s tenacious father who as a civil servant knows well how to navigate red-tapism, the administration of PIMS which supported the initiative to whatever extent it could and the doctor driven by maternal love who was the spirit behind the project indeed deserve to be mentioned for fighting against all odds to make it a reality. Their refusal, in the face of pressure, to change the original request for number of staff in the PC1 from 42 to 84 to accommodate the powerful elite’s ‘quota’, exemplifies the unsung heroes in the system.
Nobel laureate Dr Muhammad Yunus from Bangladesh mentions the said project in his book Building Social Business: The New Kind of Capitalism that Serves Humanity’s Most Pressing Needs.
He writes: “It was quite a bold move for Dr Faulkner to undertake this project in Pakistan. While he had developed a fine level of cross-cultural sensitivity when caring for the patients from Asia and elsewhere during his work in the children’s hospital in Florence, he had never actually worked in a developing country. …With the help of his two doctor partners from Pakistan, he felt ready to make the move.”
Up till now over 800 families have been registered and offered free blood screening; and a total of 94 children have undergone transplantation with results comparable to those obtainable in Italy, but at a much lower cost.
Why this project has not spread to other public sector hospitals across the country is anybody’s guess. Dr Yunus may have found the project an inspiring model for similar work in Bangladesh but our media as well as politicians stay oblivious to such causes.
The Council for Islamic Ideology too is hardly bothered to address important issues such as the need for legislation to make blood screening mandatory for couples before marriage, which would certainly help eradicate thalassaemia in Pakistan. Iran has done it successfully.
Governance is not about reacting to a situation: it is about acting — through focused planning rather than political gimmicks —way before a situation arises. It would be daydreaming to expect the spotlight on such issues in Pakistan. There have been reports of thalassaemic children testing positive for HIV allegedly due to infected blood transfusions and of infants dying for lack of oxygen.
The kids who lose such battles would of course be admitted to paradise, no questions asked, but I am afraid we will cut a sorry figure when we are asked how much we valued His creation.
The writer is a former civil servant.
Published in Dawn December 14th , 2014