The Silent Suffering of Thalassemia Patients: A Call to Action

Approximately, it can be about 6,000 patients in Telangana, but the numbers are not registered anywhere, there is no registry like, but we assume there must be around 1000 patients in Hyderabad alone.

Could you tell us what Thalassemia is all about?

Thalassemia is a genetic blood disorder that’s easily preventable. Treatment for Thalassemia patients in Telangana involves lifelong blood transfusions, every 15-20 days, to manage the condition. Due to blood transfusions, iron accumulates in the body, requiring iron-removing medications.

Thalassemia is an easily preventable blood disorder that comes from parents. If both parents are Thalassemia minor, like me, who didn’t know they had it since we don’t show symptoms, there’s a chance their child will be Thalassemia major.

Children born with Thalassemia major appear normal at birth due to the mother’s blood support, but they only survive for 4-6 months without outside blood. After that, they need lifelong blood transfusions every 15-20 days. We have patients, even 35-40-year-old professionals, who require these transfusions.

And what are the symptoms to watch out for?

As soon as the hemoglobin level drops, Thalassemia patients feel unwell, despite taking medicines. But as soon as they receive a blood transfusion, they are back to normal, playing and active. This lasts for 15-20 days, after which they need another transfusion. This cycle continues lifelong, every 15-20 days.

How accessible is Thalassemia treatment in Telangana and AP?

In rural areas, access to treatment for Thalassemia is limited. Facilities are scarce in Telangana— either blood isn’t available, or quality blood isn’t available, or they don’t know what Thalassemia is.

Is there a way to prevent this?

Thalassemia is easily preventable. The Central Government has a program for sickle cell, but not for thalassemia. They are doing population screening in tribal areas, but it’s not yielding results. Our approach is different. We have made the collector in charge of this project in Mahabubnagar. Now all pregnant women in the district are tested for the HbA2 test in their first trimester.

If the mother isn’t a carrier, she can continue the pregnancy. If she is, her husband is tested too. If both are carriers, we counsel them and show them patients suffering from thalassemia. We then conduct a serious sampling of the fetus. If it’s a carrier and it’s thalassemia major, we advise them to consider abortion. We have already saved 80 children from being born with thalassemia major in Mahbubnagar district.

I firmly believe that within 5 years, Telangana can be totally free from thalassemia if the government makes the HbA2 test compulsory for all pregnant women in their first trimester. It’s doable, and the test costs just 100 rupees.

Is it possible to replicate Mahbubnagar success throughout India as well?

It’s doable, even with a large population—you just need to plan big. Prevention is better than cure, and preventing thalassemia is less expensive than treating it.

Is Bone Marrow Transplantation a permanent cure for Thalassemia? How is the procedure done?

The only available treatment for Thalassemia is bone marrow transplant, which requires a 100% match from a sibling or parent. The patient’s hemoglobin and ferritin levels must be well-controlled before the transplant. Bone marrow transplant is expensive, but we have donors and CSR activities that provide funding.

What are the treatment costs like?

The treatment costs for bone marrow transplant are around 10-20 lakh rupees for 100% match cases. For haplo transplant, where there’s no match, the cost is anywhere between 15-40 lakhs. Haplo transplant uses the parent’s gene, which supports the child, but requires extensive pre-transplant preparation.

How crucial are blood donation camps for Thalassemia patients

Blood donation camps are crucial for Thalassemia patients. We have a team that regularly contacts camp organisers, MNCs, corporate hospitals, colonies, and colleges to arrange blood donations. We receive calls from people wanting to donate blood on special occasions. We need around 100 units of blood daily for our 70 patients, and thankfully, we have never had a shortage.

What are the precautions to take to prevent Thalassemia?

I urge couples to get tested for the HbA2 test before getting married. If you are a carrier, avoid marrying another carrier. If both are carriers, be cautious during pregnancy. It’s not necessary that children of carriers will have thalassemia; it’s approximately 1 in 4. Many thalassemia patients lead healthy lives, like my 25-year-old granddaughter who’s thalassemia major but healthy and independent.