Nearly 100,000 people in India with the Thalassemia major disorder die before the age of 20 because they lack access to necessary treatment.
Thalassemia is a blood disorder, which destroys critical red blood cells. There are various degrees of severity associated with this disorder—major and minor.
Thalassemia major refers to a severe form in which patients require regular blood transfusions to survive. This increased destruction of red blood cells is due to a genetic defect that decreases their survival.
According to some estimates, over a 100,000 people in India die before the age of 20 from Thalassemia major because they do not have access to the necessary treatment. With 10,000 children in India born with the disorder every year, this is a serious matter that requires intervention.
In response to this public health concern, The Wishing Factory (TWF), a non-profit organisation, joined hands with the Indian Railway Catering and Tourism Corporation (IRCTC) to refurbish blood transfusion centres in Pune and Ajmer.
As part of their corporate social responsibility (CSR) initiative, the IRCTC will deliver Rs 13 lakh to the NGO. This sum will be spent on equipping blood transfusion centres in Pune and Ajmer with modern equipment that are both safe and efficient. In Pune, the facility will be built in partnership with the Indian Red Cross Society, while TWF is in talks with various medical facilities and organisation for the Ajmer centre.
“In most cities, blood banks are yet not able to provide nucleic acid testing facilities, which eliminates the chances of transfusion-related infections such as Hepatitis, etc.,” says Partth Thakur, founder and chairperson of TWF. As a patient suffering from Thalassemia major, Thakur is keenly aware of what more is required to tackle this problem.
“More importantly, the price of leukocyte blood filters should come down substantially. At current prices, the facility is way beyond the reach of ordinary citizens, thus leaving them with little option but not to use one,” he adds.
Also, these blood transfusion centres will also double up as a repository for iron chelation pumps. What these pumps do is get rid of the excess iron from a patient’s body. One such pump costs approximately Rs 36,000 in the open market.
Speaking to The Better India, senior members of TWF have said that these facilities will provide the pump to a patient free of charge which he/she will return after use. While the Indian Railways is funding the refurbishing of these centres, the recurring costs will be taken care of through contributions from individual donations and the managing trustee of TWF.
The project is slated for completion by the end of January 2018.
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“Of all the patients registered with us most of them are underprivileged and find it difficult to avail of basic healthcare facilities like blood filters during blood transfusion and an infusion pump for iron chelation,” says Komal Mishra, President of TWF.
“Since last year, we at TWF, have focussed on looking after the healthcare needs of patients who cannot afford it and the blood transfusion centre is one such endeavour of ours to overcome it. In the upcoming year, we plan to work setting up infusion pump libraries at different blood transfusion centres so that maximum patients can benefit out of it,” Mishra adds.
Earlier this year, TWF secured ISO 9001:2015 certification. Their objective is to work towards raising the standard of living for patients in different cities by providing lifesaving medicines and giving them a sense of community.
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“Looking at their past accomplishments and the purpose of providing best healthcare facilities, we went ahead with this association,” said MP Mall, the CMD of IRCTC. “We hope to bring the much-needed attention towards providing safe blood transfusion facilities to the patients and thereby enable them to live a healthy life.”
TWF’s tie-up with IRCTC is one such step towards making the lives of these patients easier. “We need more companies and individuals to associate with us so that we can improve the Thalassemia scenario in India,” Thakur adds.