LifeGA directors with staff and patients at Life Blood Centre
The World Health Organisation says that a blood service that gives patients access to safe blood and blood products in sufficient quantity is a key component of any effective health system. While we take our blood service for granted in Australia, providing safe blood is not so easy in a country like India. That is why Life Global Australia supports the Life Blood Centre in Rajkot. The Centre is the lifeblood of health care in the region.
In Australia, access to blood and plasma is free in both private and public hospitals because blood products are funded by state and federal governments. In India, however, the cost can range from 1000INR to 10000INR. This can prevent access to life-saving blood for many living below the poverty line. LifeGA works with our in-country partner charity, Project Life, to provide free blood for needy people through the Life Blood Centre in Rajkot.
“The Life Blood Centre has been internationally recognized,” said LifeGA Founding Director and Chairperson, Dr Dipti McGowan. Project Life established the Life Blood Centre in 1981, and in 2020 the Centre received a prestigious ISBT Award for Developing Countries, citing its world class equipment and commitment to providing scientifically validated processes.
The work of the Life Blood Centre in Rajkot is particularly important for people with thalassaemia. Thalassaemia is a genetic disease in which a mutation causes the production of abnormal haemoglobin. If there is a mutation in one gene, it is called thalassaemia minor. Thalassaemia minor patients have mild anaemia but can usually conduct a normal life. However, if two people with thalassaemia minor have a child, each of them may pass on the mutation and there is a one-in-four chance that their child will have thalassaemia major. This is a very serious illness in which the faulty synthesis of haemoglobin means the child is susceptible to difficulties including bone deformities, delayed or stunted physical growth, lowered immunity and general weakness. Few patients live past their teens. These patients need blood transfusions every 2-4 weeks of their lives.
Dhaval Gadhiya has received over 600 blood transfusions. Now in his 30s, Dhaval tires easily and would like to decrease the amount of physical work in his job as a labourer. He is grateful for LifeGA’s support of the Project Life Blood Bank which provides high quality blood transfusions, enabling a much longer life than had been predicted. He is hopeful about the future for others living with thalassemia.
“Please keep up your good work so that others don’t have such a tough journey,” Dhaval said.
Rahul Bharatbhai Malasatar was diagnosed with thalassaemia major when he was two months old. “I have lived with weakness, tiredness, anaemia and facial bone deformities for 28 years,” Rahul said. Thanks to regular transfusions, Rahul attended school until he was 17, and has been employed since then. Less fortunate is Kinjahl Manubhai Vagh.
“I have never attended school or been able to do paid work,” Kinjahl said. Now 22-years-old, Kinjahl was diagnosed at five months, and has always suffered from anaemia, fatigue and slow growth.
Not one of Dhaval, Rahul and Kinjahl’s parents was aware that they had thalassaemia minor.
Project Life established the Life Thalassaemia Prevention Centre in 1993. To reduce the number of children likely to inherit the disorder, the Centre has now conducted over 700,000 thalassaemia screening tests and raised awareness of the condition and how to prevent it. Screening takes place as early as possible, preferably during adolescence, so that carriers do not get into relationships or have arranged marriages with other carriers.
“We provide awareness literature and explain by using a chart the possibility of having a child with thalassaemia minor or thalassaemia major,” Project Life Joint Executive Trustee, Ms Meetal Koticha Shah, said. People then go into a relationship with awareness, choosing either to be childless, or to be tested early in pregnancy. “If a screening test shows that a couple both have thalassaemia minor, we advise them to go for pre-natal testing”, Ms Shah said. Married couples are counselled so that they are aware of the issues a thalassemia major child will face, and the emotional and financial cost to the family.
Organising and funding screening camps, testing, education and counselling for people in remote areas of Gujarat where thalassemia is prevalent requires considerable resources. Project Life receives donations from individuals and socially responsible corporations, and has the support of local municipalities. The combination of education and testing has proven effective.
“As per a recent report, to date 122 cases of thalassaemia major have been prevented,” Ms Shah said. But Project Life and LifeGA want to do more than provide low cost transfusions, life-changing information and screening tests. “It seems that people are gaining awareness, but still a lot of work needs to be done to make our region thalassaemia-free.”
Added to the combination of pragmatism to treat thalassemia symptoms, and persistence to tackle the cause, comes the power of ambition. Not content with being the lifeblood of health care in the region, LifeGA and Project Life are determined to eradicate thalassaemia from Gujarat and from India. But then, LifeGA is always seeking to do more.
“When we work together, we can achieve all we envision and more,” Dr McGowan said.
www.lifeglobal.org.au
