The forgotten thalassemia patients during the pandemic

The Covid-19 pandemic is a gargantuan adversity which has paralyzed the world. Coronavirus, an invisible unknown enemy, has forced us to go into hiding under lockdown. 

In this unprecedented precarious situation, a significant unnoticed number of thalassemia patients of around 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, Covid-19 lockdown has exacerbated the situation.   

Bangladesh has been facing a silent epidemic of thalassemia, which is an inherited haemoglobin disorder. 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 unfortunately acquire this chronic disease. Thalassemia manifests in severe anaemia and other associated complex symptoms. Every year, approximately 10,000 children are added to the growing list of thalassemia patients in Bangladesh.    

Thalassemia is not only a life-long disease for an individual, it also affects the family. Our research findings have shown that the cost of standard treatment is high (TK.10,000-25,000 monthly), 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 based in Dhaka. However, nearly 70 percent of the people of Bangladesh live in rural areas. Most of the patients from outside 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. An earlier study, initiated by the 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 percent of blood comes from voluntary donors. The study also showed that two-thirds (70%) 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 percent faces a shortage of supply, suggesting a huge gap between blood demand and supply. It is likely that 70,000-80,000 thalassemia patients were not accounted for in the calculation of necessary 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 condition and limited shelf-life of blood. 

Our recent study on 365 families at Bangladesh Thalassemia Samity Hospital found that nearly 78% 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. The scenario is arguably worse 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 for both the blood donors and recipients (i.e., the thalassemia patients). 

Community clubs and NGOs have postponed blood donation programs. Friends and relatives are also unable to come forward to donate blood.  
Despite Bangladesh lying in the world's thalassemia belt, most people are unfamiliar about thalassemia, surprisingly even in the educated segment of the society. 

BRF has conducted a study among 1578 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 policy level, considering the plights of thousands of families with thalassemia children in Bangladesh. 

In future, in public health preparedness strategy during a crisis like the Covid-19 pandemic, the issue of thalassemia patients must 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.

The author is a public health researcher with multi-disciplinary experiences covering academia and industry for 20 years.  An Honorary Principal Fellow at the University of Wollongong, Australia, he is currently serving as an Associate Professor at Independent University, Bangladesh.