This disease is life-threatening, yet largely preventable through awareness
The Covid-19 pandemic is a gigantic nemesis which has paralyzed the world.
Coronavirus -- an invisible, yet unknown enemy -- has forced us to go into hiding under lockdown. The existing weakened and inadequately prepared health care system of Bangladesh is on the verge of a breakdown. In this unprecedented precarious situation, a significantly unnoticed number of thalassemia patients (70,000-80,000), whose lives depend on regular blood transfusion and treatment, are fighting for their lives due to acute shortage of blood supply.
While access to blood remains a persistent challenge in Bangladesh, the Covid-19 lockdown has exacerbated the situation.
Bangladesh has been facing a silent epidemic of thalassemia, which is an inherited hemoglobin disorder. Weird as it may sound, thalassemia is an incurable life-threatening, yet preventable disease. Based on recent studies, an estimated 10-12% of the population (over 16 million people) are carriers of a faulty gene causing thalassemia.
The carriers remain healthy throughout life. When two carriers get married, their children may acquire this life-long disease.
Thalassemia is manifested by severe anemia and other associated complex symptoms. Every year, approximately 10,000 children are adding to the growing list of thalassemia patients in Bangladesh.
Thalassemia is not only a life-long disease of an individual; it also affects the family. Our research findings have shown that the cost of standard treatment is high (Tk10,000-25,000), which largely exceeds the average family income in Bangladesh.
The psychological impact of living with a long-term condition and associated social stigmatization is also a heavy burden for patients and their families. Specialized hospitals for thalassemia patients are mostly in Dhaka.
However, nearly 70% of the people of Bangladesh live in rural areas. Most of the patients from outside of Dhaka can’t afford to visit Dhaka for treatment due to financial constraints.
Regular blood transfusion and costly chelation therapy are essential components of thalassemia management. Our prior study, initiated by Biomedical Research Foundation (BRF) revealed that nearly two-thirds of the thalassemia patients require one to four bags of blood every month. A stark reality is that Bangladesh faces a severe shortage of voluntary blood donors.
According to the report published by the World Health Organization, over 600,000 units of blood were collected against an estimated demand of 800,000 units in 2016. Only 31% of its blood comes from voluntary donors. The study also showed that two-thirds of blood donations came from relatives and friends of the patients.
Only half of the district health facilities keep a stock of blood for later use, and nearly 41% faces a shortage of supply, suggesting a huge gap between blood demand and supply. Likely, 70,000-80,000 thalassemia patients were not counted while the calculation of required blood units since the issue of thalassemia is ignored at the policy level.
In Bangladesh, blood donation drives are mostly operated in academic institutions (universities or colleges) and most of these initiatives focus on various occasions to collect blood from donors. A significant portion of this blood becomes unusable due to poor storage conditions and the limited shelf-life of blood.
Our recent study on 365 families at Bangladesh Thalassemia Samity Hospital has found that nearly 78% of families struggle to get blood for their thalassemic children and 81% of them do not receive support from any organized blood donor’s clubs/platform or NGOs. This scenario is arguably worst at the district level.
Uncertainty around Covid-19, followed by country-wide lockdown, is affecting people’s lives in unprecedented ways -- for example, the lack of public transportation to restrict people’s movement.
Such restrictions and fear of contracting Covid-19 are making it difficult both the blood donors and recipients (ie the thalassemia patients). Community clubs and NGOs have postponed blood donation programs. Friends and relatives are not also coming forward to donate blood.
Most people are unfamiliar about thalassemia, and, surprisingly, even in the educated segment of the society. BRF has conducted a study among 1,578 college students at the district level, which found that nearly 70% respondents had not heard about the term “thalassemia” and 40% of them were reluctant to donate blood for thalassemia patients because of misconceptions and stigmatization.
Thalassemia is a preventable disease if a marriage between two carriers is stopped. General public awareness of this life-threatening incurable genetic disease is the cornerstone for thalassemia prevention strategies.
To implement this, the government has to prioritize thalassemia at the policy level, considering the plights of thousands of families with thalassemia children in Bangladesh.
During a crisis like the Covid-19 pandemic, the issue of thalassemia patients must also be taken seriously. In this context, the community-based blood banking needs to be encouraged and patronized by the government to keep the vulnerable transfusion dependent patients within a safety net.
Mohammad Sorowar Hossain, PhD is Executive Director, Biomedical Research Foundation (BRF), Bangladesh and Associate Professor, IUB. Email: [email protected]