Swapnil Gawande, founder of Deesha Eye Banks, was all of 10 when he lost his close friend Abdul to dengue in 2006. Swapnil always wished to find a way to help Abdul see, who was born visually impaired. But the tragic incident stirred something in him and Swapnil started paying more attention to news regarding eye donations.
The conversation around eye donations was not yet mainstream, at least in Maharashtra’s Amravati district where Swapnil is from. So, he would find excuses to talk about it through school elocution and essay writing competitions.
His father Arun, who was working with a private firm, joined in the quest to search for eye care infrastructure for another grave reason. Arun’s friend’s son had lost an eye due to an accident and the transplant was possible but the nearest eye donation centre was far away.
For the next couple of years, the father-son duo met 40 ophthalmologists across Amravati and Nagpur. In 2013, they formally registered a non-profit ‘Deesha’ to establish eye donation centres and provide affordable eye checkups.
“Sure, there was no eye donation centre in our district but what made things worse for my friend were his financial conditions. He was raised by a single father who did not have enough money for his cornea transplantation. Among all the organs, the eyes get the least attention when it comes to donation. We wanted to change that and thus began ‘Deesha’, which means ‘direction’,” Swapnil tells The Better India.
The 29-year-old now runs five eye donation centres across Maharashtra. His organisation has encouraged more than 14 lakh people for eye donations.
Of the six lakh people who have pledged to donate through Deesha, Swapnil has facilitated more than 3,200 donations. Additionally, his centre has conducted 2,100 cornea-related surgeries, including cataracts.
A recipient of the Global Nagpur Award, 2021 and SPJIMR Alumni Award, 2021, Swapnil has given up a lot in the process.
Instead of doing undergraduate work at the Vellore Institute of Technology, he chose to stay in Amravati and study in a local college to build Deesha. He chose SP Jain in Mumbai over IIM in Ahmedabad for his MBA to be close to Amravati and his father. As a violinist, he also put his music career on the back burner.
Letting go of lucrative career opportunities was not an easy decision given that he had several challenges to address while developing eye donation centres.
Swapnil takes us through his journey and shows us that there’s light at the end of every tunnel.
Red Tape, Funds & Awareness
With guidance from ophthalmologist such as Padma Shri Dr Tatyarao Lahane, Dr Avinash Saoji, Social Worker, Director – Prayas; Dr Manish Totey, Medical Director; Deesha International Eye Bank Amravati; Dr Vijay Kawalkar from Yavatmal; Dr Prakas Marathe former president, Maharashtra Ophthalmological Society and Padma Vibhushan Dr KH Sancheti, Swapnil and Arun identified infrastructural gaps and began work from there.
“It took us almost seven years to raise Rs 1.5 crore via loans and crowdfunding to purchase equipment and build infrastructure for five centres. Dr Manish believed in us from day one and was kind enough to donate two rooms of his hospital and some equipment to set up the second centre,” says Swapnil.
Of the five centres, four of them have an eye donation retrieval centre and an eye bank for storing cornea tissue and the fifth is an eye transplantation centre.
The eye banks were launched after the legislation called the Transplantation of Human Organ Act (THO) was passed in India to prohibit the sale of organs in 2009.
“Due to the ban, many doctors approached us to collaborate for cornea transplants which gave us more visibility and attention,” he adds.
While running the centres he also caught several malpractices in other eye banks.
“The well-to-do families were bribing the eye banks to push the names of their loved ones in the donation list as the records were yet to be digitised. With the help of my engineering friends, we proposed to put the process online, and in 2014 it was approved by the Chief Minister’s Office. However, the contract of making and running of the website went to a private company and it soon collapsed. The HC has directed the company to come up with real-time data,” he says.
He also spotted cornea wastage due to a lack of storage facilities and improper handling. According to his survey, only 25 per cent of the donated corneas were used for transplantation.
So he and his army of volunteers trained technicians across 77 eye bank centres.
“There may be an eye collection centre in a region but if the transplantation centre is far away the quality can deteriorate. The preservation technique and storage is very expensive and the government only provides Rs 1,000-2,000 for storage which is barely anything. Something as simple as storing the cornea between 2-8 degrees can maintain its quality, which many are unaware of,” he says.
Establishing financial stability is another issue that the team grapples with daily. Every centre requires Rs 2 lakh per month which is raised via donations, sponsorships and crowdfunding.
“We often tie-up with banks, educational institutes and corporates to fund transplantation processes for the underprivileged. Cornea damage is related to poor diet so most cases we get are of the poor. Thus, eye donation is heavily dependent on charitable work. Another model that we adopted is charging fees for those who can pay and channel the funds who can’t,” he says.
The efforts of establishing infrastructure is worthless if people are not sensitised properly, says Swapnil. So he has formed a team of 2,700 volunteers, mostly aged between 20-30 to spread awareness in rural and tribal belts of the state.
Their mobile eye clinic equipped with machines and equipment goes to different villages to conduct free check-up camps and offer treatments. It is through these visits, did Swapnil realise the extent of negligence given to cornea health.
Sharing a few instances, he says, “In Badnera village we had conducted a camp in a municipal school. There, a Class six girl would always smile during class according to teachers and would fail in most papers. When we checked her eyes and gave her the right glasses, she started crying and said this was the first time she was able to see properly. So to avoid questions, she smiled all the time. It was very heartbreaking. In another school, these twin boys had less than 20 per cent vision left and had cataracts due to negligence. We financed the surgeries and now all of them can see properly.”
Swapnil also mentioned the case study of Hirapur where nearly 60 per cent had eye-related problems like cataracts, irritation and dryness before the pandemic. Their eye camps were only starting to make a difference and the lockdown was imposed. Recently when Deesha conducted a camp, they found 80 per cent of the village had issues. He hopes to bring down these numbers and conduct more camps. He also hopes to establish six more eye donation centres in future.
Dr Avinash who has been an integral part of Deesha, perfectly sums up Swapnil’s journey, saying, “Swapnil has been a very hard working person since his childhood. Through his eye banks, he has changed the way people perceive eye donations in rural landscapes. People like Swapnil translate promises of community-driven impact into a reality.”
You can contact Deesha here.
Times of India
Edited by Yoshita Rao