The Foundation that fights blood

For thousands of Bangladeshi families, a thalassaemia diagnosis does not arrive as a single moment. It arrives slowly — in a child's pale face, in monthly hospital visits, in the quiet arithmetic of blood bags and medicine costs that never stop adding up. For more than two decades, the Bangladesh Thalassaemia Foundation has positioned itself as the institution these families turn to when the weight becomes too heavy to carry alone.

Established in 2002, the Foundation did not begin as a hospital or a research centre. It began as something more modest — a collective effort by thalassaemia patients, their parents, caregivers and a group of dedicated volunteers who recognised that quality care was simply not reachable for most people affected by the disease. "The Foundation began its journey on a small scale through the collective efforts of thalassaemia patients, their parents and caregivers, and a group of dedicated volunteers," said Professor Dr Manzur Morshed, Chairman of the Bangladesh Thalassaemia Foundation.

What started as a medical counselling centre — guiding patients on where to find treatment and how to access safe blood — has since grown into a specialised 50-bed hospital in Malibagh, Dhaka, serving more than 9,000 registered patients and administering between 100 and 120 blood transfusions every single day.

The scale of need that institution serves reflects a disease burden that remains deeply underacknowledged in Bangladesh. According to the National Thalassaemia Survey 2024, conducted by the Bangladesh Bureau of Statistics, 11.4% of the country's population carry the thalassaemia gene. That is one in every nine people. Between 8,000 and 11,000 children are born with the condition every year. Each of them will require one to two blood transfusions every month to survive — at a cost of roughly Tk10,000 to Tk15,000 per patient per month, a figure that places treatment entirely beyond reach for the majority of affected families.

"Most of the patients receiving treatment at our hospital come from financially disadvantaged backgrounds, while thalassaemia treatment itself is highly expensive," Dr Morshed noted. To bridge that gap, the Foundation operates a Zakat Fund, a Sponsorship Programme and a Poor Fund, through which low-cost or entirely free medical services and medications are provided based on each patient's financial situation.

The logistical challenges extend beyond medicine. Many patients travel from distant districts to receive care in Dhaka, an undertaking that is itself a financial strain. For them, the Foundation operates Thalassaemia Nibash — accommodation where patients and their attendants can stay and receive meals free of charge for up to three days. It is a detail that speaks to something the Foundation understood early: that treating thalassaemia means treating the whole circumstances of a patient's life, not only their blood count.

The Foundation is registered under the Ministry of Social Welfare and became a member of the Thalassaemia International Federation in 2003, giving it both institutional legitimacy and a connection to the global network working on the disease.

Yet the Foundation's ambitions extend beyond treatment. Prevention, it argues, is where the real battle must be fought. A hereditary disorder passed between carriers, thalassaemia can largely be avoided with a single pre-marital blood test — Haemoglobin Electrophoresis — which identifies whether a person carries the gene. If both partners are carriers, their child faces significant risk. If only one is a carrier, their children can remain entirely healthy.

"There is no alternative to public awareness when it comes to preventing thalassaemia," Dr Morshed said. The Foundation conducts awareness campaigns in schools, universities, government offices and communities, alongside carrier screening programmes and voluntary blood donation drives. It is also working with the Directorate General of Medical Education, medical college students, physicians and policymakers to build a coordinated national response.

That coordination, however, remains incomplete. Bangladesh lacks mandatory premarital thalassaemia screening and a national patient registry. The Foundation has acknowledged that its own capacity, despite years of expansion, cannot keep pace with the scale of the problem. "Given Bangladesh's large population, the Foundation's efforts alone cannot adequately address the challenge," Dr Morshed said. "A coordinated national approach, supported by the government and involving all relevant stakeholders, is essential."

For the thousands of children who arrive each month at the hospital in Malibagh — many carried in by exhausted parents who have travelled through the night — the question of national policy feels distant. What matters is the blood bag, the bed, the medicine. The Bangladesh Thalassaemia Foundation, for all the gaps that remain, continues to be the institution that shows up when those things are needed most.