For almost a decade-and-a-half, Kishore Meshram has been undertaking a gruelling 85km journey from his village in Narkhed taluk to Nagpur every month, accompanying his son Mayuresh — now 14, a thalassaemia patient — for blood transfusions.
Meshram and Mayuresh aren’t alone. Across Central India, several others need to travel long distances to reach the Thalassaemia and Sickle Cell Centre (TSCC) at Jaripatka in Nagpur, Maharashtra, with the medical facility serving as a lifeline for impoverished tribals in a 500km radius.
Without consistent transfusions, these patients have to endure excruciating agony or even face death.
‘Inadequate awareness’
Patients also need clinical intervention during vaso-occlusive crisis (when microcirculation is obstructed by sickled RBCs). As countless patients suffer in silence, the number of those afflicted with these genetic disorders continues to mount. Currently, there are more than 1.5 lakh thalassaemia and 14 lakh sickle cell anaemia patients nationwide.
“Inadequate awareness about inherited blood disorders is the sole reason why the burden of thalassaemia major and sickle cell anaemia continues to surge despite being entirely preventable,” said Dr Vinky Rughwani, di rector, TSCC, which provides transfusions — otherwise unaffordable for the hundreds who come from faraway hamlets of Madhya Pradesh and Chhattisgarh — for free.
Established in 2004, TSCC has conducted more than 66,600 complimentary transfusions for 1,500 registered patients and provided free consultation to 45,000 individuals. It also offers free periodic assessments for cardiac, renal, hepatic, and other ailments to monitor treatment side-effects.
TSCC has collaborated with Bengalurubased Sankalp India Foundation to screen expecting mothers for haemoglobinopathies. In the past year, TSCC screened approximately 21,000 pregnant women, identifying more than 1,800 carriers who required testing of their spouses. Ultimately, 286 couples were found to be at heightened risk of giving birth to a child with thalassaemia major or SS-pattern.
Prenatal tests important
Advocating mandatory premarital screening for thalassaemia and sickle cell disease, Rughwani asserts that every individual must undergo testing before marriage. Chorionic villus sampling (CVS) or a prenatal test is playing a key role as a prevention tool. Of a sample size of 21,000 pregnant women, “at least 9% were found to have traces of sickle cell or thalassaemia, while 15% of 1,800 couples were at risk”, he said. Daga Hospital, Govt Medical College and Hospital, and Indira Gandhi Govt Medical College and Hospital also provide medications, transfusions, and diagnostics to patients, though they lack a dedicated facility for the treatment of these conditions.
Paediatrician Dr Sanjay Deshmukh said Nagpur requires a govt-dedicated sickle cell and thalassaemia centre for transfusion, diagnostic, and advanced treatments, such as bone marrow transplant (BMT), as patients from across Central India seek treatment there.
Prompt treatment, fewer formalities, and a spectrum of allied complimentary services are some of the benefits that draw patients from Vidarbha and other parts of Maharashtra, Chhattisgarh, and Madhya Pradesh.
Meshram said before being referred to TSCC, was strained both financially and mentally. He now goes about in his village, urging marriageable youths to take the test before selecting their life partner or planning a child.
Nevertheless, much remains to be done for these patients, feels Rughwani.
A significant breakthrough came with Coal India’s announcement of a Rs10 lakh sponsorship for thalassaemia patients under 12 years of age to undergo BMT.
Since then, 50 patients from TSCC have benefited. “The CM and PM’s relief funds, Coal India Ltd, and other organisations have enabled us to provide Rs 15 lakh for BMT, alleviating the financial burden on families,” said Rughwani. Looking ahead, he’s resolute in securing job reservations for patients and govt funding for BMT for sickle cell patients, marking the next milestone in his mission to secure the lives of those affected.
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