"In the last five months, I had needle pierced in my body for more than nine hundred hours because I am taking intensive iron chelation therapy. But I am not sure whether I would be able to continue even this for the emerging scarcity of the medicine during the pandemic", says Aksa (not a real name), a 23 years old thalassemia patient.
Thalassemia is the most common genetic disorder. According to World Health Organisation (WHO), around 10 per cent of people of the total population are carriers of thalassemia in Bangladesh, which is around 16 million people. Though exact figures are not available, around seven thousand children are born with the disease every year in the country. More than sixty thousand patients suffer from a severe form of thalassemia in Bangladesh who need blood transfusion every month.
Not only blood, another consequence of thalassemia is iron overload in the body which needs to be chelated by oral medicines or injection. The production and supply of the iron-chelating medicines have been greatly hampered during the COVID-19 pandemic. Although the coronavirus is not transmitted through blood, the hassle of finding donors every month has always been a burden for the family. And undoubtedly the condition of insufficiency has worsened further due to the unprecedented pandemic.
Aksa is from a well-off family, but the cost of treatment eats up a large portion of family income for the majority of the patients with thalassemia having a low family income. Mukti (not a real name), a 22-year-old patient from a village in Khulna, says, "Proper care and treatment of the disease needs 20 to 30 thousand taka per month which is very hard to bear for my father. I was not transfused until my hemoglobin level dropped to 3.4 last month. Donors are hard to find in the village. I feel weak always. Moreover, my family does not behave well with me because I am a burden to them." The undertreated patients face slowed growth, enlarged spleen, and bone deformities. The consequences of the under-treatment are so severe that it can cause liver disease or heart disease making the disease even more difficult to deal with. Like Mukti, many of the patients living outside of Dhaka are taking whole blood instead of packed blood cells every month having no other alternative. Thalassemia patients need packed blood cells and taking whole blood repeatedly can be harmful to them.
Most of the treating centres are located in Dhaka providing medicines, day-care transfusion, and some tests at a subsidised price for the members or at free of cost for a selected number of poor patients. However, patients living outside the capital city are deprived. For adequate blood transfusion, Bangladesh needs more than 1.4 million units of blood each year only for thalassemia patients. Fariha (19), a volunteer from the Bangladesh Thalassemia Samity Hospital blood donation camp who also happens to be a patient herself, says "Blood donation camps could not be run during the pick time of COVID-19 due to the fear of spreading the virus but we did not lose hope. We made calls to the donors following our database, we even went to their doorsteps to collect blood for our 4500 registered patients. It is sad that many healthy people do not donate due to the fear of the needle or for trust issues with the blood banks. But I must say, people are more aware of the necessity of blood donation nowadays compared to earlier times. We also try to convince them by saying that it is the most valuable gift one can give to another. But still negative blood groups remain scarce."
According to the position statement of the Thalassemia International Federation, thalassemia patients should be considered as a vulnerable group for the ongoing COVID-19 and should be given priority in the national vaccination programme. Till now, the government of Bangladesh did not recognise the need for COVID-19 vaccines for thalassemia patients. Bidhan (30), having Hb E-beta thalassemia, recently got the vaccine as a front-liner. In his words, "We, thalassemia patients, are immunocompromised. Vaccine is the only way out from the coronavirus and so my doctor suggested me to be vaccinated. If all the thalassemia patients were registered nationally and provided with a health card, it would be a lot easier to include the people with thalassemia in the priority list of the vaccination programme."
The mental health issue of the patients has always been overlooked. Abonti Roy, Nutritionist and Counsellor of Bangladesh Thalassemia Samity Hospital says, "Most of the patients, especially the adults feel depressed and worried about their life. COVID-19 worsened the mental health condition of all and even more of the thalassemia patients."
The only cure of thalassemia to date is Bone Marrow Transplants (BMT) but the scopes of BMT are very low and even lower in the perspective of Bangladesh. Hence, the only way of survival for these thalassemia patients is supportive treatments.
If a thalassemia trait person marries another trait person, there is 25 per cent possibility for the baby to born as a thalassemia patient in each pregnancy. Thalassemia traits are found in silent carriers having no symptoms. So, the only way to prevent thalassemia is knowing whether a person is a carrier by testing himself with hemoglobin electrophoresis. The GoB is determined to eradicate thalassemia by 2028. As a noteworthy step, GoB published the National Guidelines on Thalassemia Management for physicians. But it is only us who can prevent thalassemia by doing blood tests before marriage.
Farhin Islam, Member, Thalassemia International Federation's Patient Advocacy Group (T-PAG) and Research Assistant, South Asian Network on Economic Modeling (SANEM). [email protected]