Mumbai: In hope of a match, 30 of a family throng free thalassemia check camp

Usman Ansari and his parents at Bandra’s HLA typing camp

In a bid to find a suitable bone marrow donor for their thalassemic children, families from various parts of Maharashtra arrived with their relatives at the Anjuman Islam Girls High School in Bandra (West), where a free Human Leukocyte Antigen (HLA) typing test camp was organised on Wednesday.

Nine-year-old Usman Ansari, a thalassemic patient, has relied on blood transfusions since infancy. "He requires blood transfusions twice a month. Although the procedure is free, we incur other medical expenses up to Rs 1,200," said Parvez Ansari, Usman's father. Thalassemia is an inherited blood disorder that can lead to abnormal haemoglobin production, which can further lead to anaemia and various other health complications.

The Ansari family resides in Bhiwandi and had travelled to Bandra with 30 of their relatives to find a match for Usman. At any other facility, the family would have had to spend at least Rs 1.5 lakh, as each test can cost anywhere between Rs 5,000 to Rs 14,000, depending on where it is conducted. "We previously had our HLA test performed at the BMC facility in Borivali, but neither I nor my wife nor our children were a match for Usman," Ansari said.

HLA typing before a bone marrow transplant is the process of identifying the unique genetic markers on a patient and potential donor's cells to determine compatibility for a successful transplant. Siblings are considered ideal donors for bone marrow transplant procedures. However, the likelihood of a thalassemia patient finding a suitable match for a bone marrow transplant within their family is as low as 25 per cent because they inherit half of their HLA markers from each parent, as noted by Madan Chawla, founder of Delhi-based NGO GIFT, which conducts HLA typing camps and thalassemia awareness and prevention activities across the country.

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After consulting with at least 10 private doctors, Ansari has been seeking treatment for his son at the BMC-run Comprehensive Thalassemia Care, Pediatric Anaemia, Cancer, and Bone Marrow Transplant Treatment Centre in Borivali (East) as it offers affordable care. The facility also provides cost-free bone marrow transplants through fundraising, which would otherwise cost at least R8 lakh. However, HLA typing is not free-of-cost.

"Our donors do not pay until the patient is committed to the transplant. But we do help patients who want to do the HLA typing test and they absolutely cannot afford to pay," said Dr Mamta Manglani, the director of the BMC-run facility. She noted that the cost of HLA typing will eventually decrease as the technology becomes cheaper. "It is a molecular test and the technology required is imported. It was Rs 12,000 when we started transplants, but now it is Rs 4,500," she said.

The Ansari couple along with 40 others are eagerly awaiting the results of the HLA typing tests. "We collaborate with companies abroad that provide us with the technology. The samples will now be sent to Germany, and it will take about three to four months for the result to arrive," said Pooja Bansal, Founding Director of GIFT.

Rs 4,500 to Rs 14,000
Expense for conducting HLA typing tests