Prema Sagar, Founder Trustee of Genesis Foundation talks about the CSR activities of the foundation, while also highlighting the situation in the healthcare sector.
Is Genesis foundation initiative more of a CSR agenda or personal initiative?
Genesis Foundation was founded on a simple premise—no child should die due to the lack of funds for treatment. This premise continues as we attempt to save little hearts from congenital heart defects and not let any parent go through the pain of losing a child.
“Hardships often prepare ordinary people for an extraordinary destiny.” These words by CS Lewis often come to our mind when we look at the journey we have taken in the last 16 years. When our lives turned upside down with the loss of our child, it seemed like we would never smile again.
What started out because of a personal loss is now much bigger than us. Our team and our vast network of supporters and advisors have made the Foundation as much theirs as ours, championing the cause. With their help, we have been able to save over 1800 lives so far. We strive to Save Little Hearts—as many as we can save because our vision is to live in an India that is free of CHD-related deaths.
How can CSR make a difference in the healthcare sector?
The cost of treatments is rising every day, and becoming prohibitive for the poor. It’s not enough for the NGO to fight this alone. There has to support from the private sector. CII’s analysis of the annual reports of 1,522 companies highlighted that Rs 89 billion worth of funds were disbursed for the purposes of CSR in fiscal 2017. Education and healthcare accounted for a bulk of the spending, with nearly 25.2 percent of funds being allocated to health and sanitation projects.
The same has been stated by another industry report in 2017 that says that top 200 companies in India spend around Rs 1369 crores on healthcare and wellness. However, as per the report, much of the spend tends to be focused on health camps and building hospitals or donating to hospitals for the upkeep of facilities. Health camps tend to have a short-term orientation and are number driven.
Therefore, while it’s a clear reflection of a progressive move by India Inc towards a healthier nation, better planning can help us meet the expansive requirement of providing health services at the grassroots level. It is therefore imperative that companies follow a well-rounded approach focussing on all key aspects such as primary care, reduction in treatment cost, promoting traditional medication treatment wherever possible and support lesser known illness areas.
Why are so many children being affected by heart disorders? How grave is the situation of healthcare facilities reaching them?
Congenital Heart Defect (CHD) refers to heart defects that exist from birth. Out of 1000 children, 8 are born with these defects. This is a global standard. In India, approximately 26 million children are born every year and that accounts for almost 250,000 children being born annually with this problem. With just 1.2 percent spend on healthcare from its entire GDP, India is among the countries with the lowest relative public expenditure on health. This too is majorly primary healthcare. Approximately, 70,000- 80,000 babies are born with critical CHD, and if they do not receive timely intervention they don’t make it to their first birthday. 10 percent of India’s child mortality rate is due to CHD. These are staggering facts that highlight the situation in the country.
Another reason there are so many children being affected is that majority of the hospitals with a good pediatric cardiac are in the private sector and concentrated in metro or tier I cities. The cost of treatment in these sectors is expensive, especially for those with limited resources. The hospitals that do offer more cost-effective treatment have waiting lists that range from months to years. There is also very limited public awareness around CHD. A vast majority of affected children particularly in the remote areas have no access to a basic life-saving surgery. These are the key challenges that exist in our healthcare sector today.
Our outreach has recently ensured that we penetrate these tier 2 and tier 3 cities through screening camps conducted with support from the doctors and hospitals that we have partnered with. We have conducted 8 such camps since 2017 and also identified children who needed support, who we then helped.
Going forward, how does Genesis hope to bring in more support through government or private players?
Our strength lies in the deep-rooted partnerships with such hospitals, doctors and thoroughly understanding the subject of CHD. Hospitals are our primary source for referral cases. These partnerships also assist in subsidizing treatment costs, allowing us to support more children. So far, we have partnered with over 25 hospitals pan India to create a community that shares our vision to Save Little Hearts.
We continue to bring in support and hope to grow the fantastic partnerships we have garnered with companies like WPP India CSR Foundation, Oracle India, Sennheiser, The Himalaya Drug Company and Pernod Ricard India Charitable Foundation, just to name a few. Our quest to raise funds for critically ill, underprivileged children over the years has attracted a large community of private players/supporters. Through our immersive fund-raising events such as Kasauli Rhythm & Blues Festival, CEOs Sing for GF Kids we continue to change the way people see ‘giving’ and build a community of not just supporters of our cause but champions of change.
Our vision is that no should die due to lack of funds for treatment of CHD. We ensure that 100% of funds raised are used towards the treatment of critically ill children, as all overhead costs are borne by the Founder Trustees.
Can academic research bring out better healthcare solutions and the costs of it as well?
Innovation in every field is path-breaking these days and is changing the way we have always looked at a particular problem/situation. With one of our partner hospitals, Amrita Institute of Medical Sciences in Kochi, we used the technology of 3D printing to create a model of an eleven year old girl – Amritha’s heart, in what was an extremely complex case. She had a very rare condition, and with the use of this technology, they were able to create a 3D replica of her heart which allowed them to understand the rare and complex problem at hand and meticulously plan the surgery. The surgery was a success and a fine example of how such technological advancements can be used to save lives.