Eye bankers speed up deliveries of corneas
Civil Society News, New Delhi
It was late in the evening on December 30 two years ago when Dr Vikas Mittal’s number flashed on Mridula Chhetri Singh’s mobile phone in New Delhi. It was actually his assistant calling on his behalf from Ambala, 200 km or so away. The surgeon urgently needed a corneal tissue for a transplant that he had to perform before January 1 if his patient’s eye was to be saved.
In minutes, Singh had sent out the request to a nationwide network of eye banks she is in touch with. A tissue was found with the Eye Bank Association Kerala at Little Flower Hospital in Angamaly, 2,600 km away in the south. The challenge was to get it to Dr Mittal in Ambala by January 1.
The Kerala eye bank is known to be quick in such circumstances. The tissue, preserved in a bottle like the one pictured on the right, was put into a thermocol box with frozen gel packs to keep it cool for at least 48 hours. It was booked on an Air India flight to New Delhi the same night. From Delhi it was to be sent on the early morning flight the next day to Chandigarh. Ambala being close by to Chandigarh, Dr Mittal’s assistants would be able to pick up the tissue and get it to him in time for the surgery.
The thermocol box from Little Flower Hospital arrived in New Delhi as planned, but dense fog in the morning resulted in cancellation of the flight to Chandigarh on December 31. It seemed Dr Mittal’s deadline would be missed. In a last-ditch effort, Singh drove to the airport and picked up the tissue from the cargo section. She took it home and got a colleague to rush to Ambala with it in a car. The surgery was performed and an eye was saved.
It is five years now since SightLife, a non-profit eye bank based in Seattle in the US, set up an office in New Delhi as part of its efforts to eradicate corneal blindness in the world. It has been partnering eye banks across India to improve their functioning so that healthy and transplantable tissues can be made available to surgeons like Dr Mittal in Ambala and elsewhere.
In 2013 SightLife facilitated 10,000 transplants and in 2014 another 10,000. This year it hopes to make 12,000 transplants possible and keep the number growing by 30 per cent year on year till 2020. Many hopes are pinned on a Cornea Distribution System. Singh is SightLife’s national distribution manager in India. She and her colleague, Robin G. Thomas, carry their mobile phones with them at all times because an eye surgeon’s deadlines can be exacting.
SightLife has worked hard in India to get to this point. There are many stages in its interesting story. By nurturing partnerships with 20 eye banks, SightLife has helped shape managerial efficiencies that never existed before. There are now employees at its partner eye banks in the country who have imbibed protocols and aspire all the time to meet global standards in the functions they perform. They see themselves as professionals fulfilling a public health need and take pride in being known as eye bankers. This is a change because eye banks in India have mostly been charitable initiatives out of a desire to do something good but run any which way. Validated systems at eye banks have made it possible to deliver quality tissues on time to surgeons. The Cornea Distribution System is the grid into which all this effort finally flows as corneal tissues move at high speeds from donors to recipients and vision is restored.
WORKING ON 3 FRONTS
A few years before SightLife opened its office in New Delhi in 2010, it worked closely with the L.V. Prasad Eye Institute (LVPEI) whose legendary chairman, G.N. Rao, a corneal surgeon himself, took a keen interest in upgrading eye banks in India.
“The relationship started on the quality aspect of our eye bank and also on how we could escalate our performance on the number of corneas that we retrieved,” recalls Dr Prashant Garg, director of education at LVPEI. “The biggest success of this association has been to focus on quantity while not compromising on quality.”
It was after a conference on eradicating corneal blindness in developing countries in 2005 that SightLife decided to use its relationships in India to build a model it could employ in other poorer parts of the world.
It has meant working on the three fronts of improving quality at eye banks, increasing the number of usable corneas and encouraging surgeons to undertake corneal grafting.
“As SightLife’s partner we have worked on all three fronts, “ says Dr Garg.
It is estimated that 100,000 corneal transplants need to be done every year in India. Getting 100,000 tissues should not be a problem since the number of deaths in the country is many times that number. But, in fact, only 25,000 transplants take place. What this means is that there are 75,000 people each year who can’t avail of transplants because of the want of tissues and surgeons.
COST OF A TISSUE
At current estimates, the cost of collecting, storing and supplying a single tissue is Rs 12,000. The surgeon’s fee is over and above this. But the basic cost of making 100,000 tissues available for surgery is just Rs 120 crore a year. It is a small sum for dealing with a serious public health issue and could even be subsidised in its entirety. Cross-subsidies are also possible with those who can afford it paying more. But there is more to the elimination of corneal blindness than mere number crunching.
Much work remains to be done. Transplant failure rates, for example, are high. Around 40 per cent of all corneal transplants in India fail because of the lack of post-operative care. Patients require follow-ups for several years after a surgery. Records show that 50 per cent of them do not return to the surgeon because they invariably travel to urban medical facilities from far-flung places. Specially trained ophthalmologists are needed to attend on patients who have been through a transplant in areas where the patients live. Also, surgeons with expertise in corneal grafting are required in much greater number. Right now eye surgeons prefer to do cataract surgeries since they are quicker and also because corneal tissues aren’t always available. It could take all of another 10 years to put expertise and systems in place, but with a concerted effort an end to corneal blindness is possible.
“There are corneal diseases for which the success of transplants is not very high and there are diseases for which it is high. Unfortunately, in the developing world, the diseases that are causing corneal blindness fall into the first group,” explains Dr Garg.
“Surgery is the first step. Post-operative care to ensure that the graft remains clear is most crucial. For that we will have to work at the residency level to train ophthalmologists,” says Dr Garg. “At present there is not much interest in this because many medical colleges and residency programmes are not performing corneal surgeries and residents are not getting exposed to the challenges in corneal transplants.”
Manoj Gulati is the country director of SightLife in India. For 17 years he was a management consultant in the US before he returned in 2010 to set up SightLife’s office here. “At that time we were supporting 3,500 transplants,” says Gulati. He was motivated by what was clearly a huge challenge.
“Initially we only offered consultancy services to eye banks and then we evolved to surgeon training and more recently we created the Cornea Distribution System. We realised that we had to look at the whole ecosystem and not just eye banking,” explains Saurabh Biswas, programme manager.
SightLife has been gently persuasive in changing mindsets. Eye banks had to be educated on international best practices. Simple things needed to be done, like having a manager for the eye bank. Most eye banks would have only a surgeon and a technician. Quality standards had to be enforced. Corneas were being donated but as many as 30 per cent of the corneas were not usable. Often this was because the removal techniques were shoddy. Greater vigilance was also needed on the health of donors so that tissues were not collected from people with HIV, Hepatitis B, syphilis and rabies.
Says Gulati: “India has 720 eye banks. In reality you do not need so many eye banks. You need large and efficient eye banks. In 2012 when we did an analysis we found that of the 720 eye banks only 125 were active and among them the bulk of the business was being done by 20 to 30. The rest were small eye banks doing 50 to 100 transplants in a year. With such volumes how can you afford a manager?”
So, SightLife decided to work with the 20 largest eye banks to understand their problems and help them adopt the best international practices.
SightLife plays the crucial role of improving systems and training and motivating people. Managers, technicians and counsellors have been encouraged to see themselves as professionals. They have been given responsibility and status and better salaries to strengthen the system and deliver quality at all levels.
EYE DONATION COUNSELLORS
Eye Donation Counsellors (EDCs) for example have a very important function. They network hospitals and meet the families of people who have died. It is a complex task that begins with getting to know that a death has taken place and then persuading the relatives to allow the cornea to be retrieved.
EDCs in India work under difficult conditions. Prior consent is not common and there is no central register to go by. An EDC has to be not just persuasive with family members, but also check on the donor’s disease profile and ensure a blood sample is collected and sent for analysis within 24 hours of the death.
An EDC used to earn Rs,000 or Rs 5,000 a month and the work would be considered essentially voluntary in nature. After SightLife’s interventions, EDCs earn Rs 12,000 to Rs 15,000 a month. Other salaries have also gone up. A manager of an eye bank gets paid Rs 25,000, which wasn’t the case earlier.
A new professionalism is in evidence with career opportunities that didn’t exist before. The example of K. Srinivas is very interesting. He has worked as a technician for 13 years at the Ramayamma International Eye Bank at the L.V. Prasad Eye Institute in Hyderabad. He has a BSc degree. Three years ago he was sent to SightLife in the US for training and he is now empowered to evaluate corneal tissues, a task that used to be only entrusted to ophthalmologists earlier.
An important aspect of SightLife’s strategy has been to streamline functions. As in the developed world, technicians are being given the skills to extract corneas and decide which tissues are usable. This frees up ophthalmologists and eye surgeons from these functions and makes eye banking more efficient.
A transition is also being made to providing pre-cut tissues. The cornea has five layers. In a pre-cut tissue the layer needed by the surgeon is separated and made ready for transplant. The surgeon is then free to focus his skills on the surgery. It also means that more than one transplant is possible from a single donated cornea.
Changes in policy at the national and state levels could make things much easier. A national register is, for instance, needed so that donors and recipients are easily identified. Right now, if a tissue is available it is not possible to know who needs it. First person consent should also be institutionalised. In the US it is put on the driving licence. In India, permission of family members is mandatory and they can refuse to allow a cornea to be collected though the individual had pledged to be a donor.
“We do agree that one should perhaps also talk to the family to know if the donor changed his or her mind. But if he or she didn’t then the donor’s decision should be respected,” says Gulati.
A national registry of donors with first person consent will immediately increase the availability of tissues. Similarly, a national registry of patients will solve the problem of allocation.
There is also no mandatory notification of death by hospitals. In the US, every hospital where a death occurs has to notify the local eye bank and organ centre. The hospital has to also provide access to the medical record of the person for the purpose of screening. It has to provide information on any possible medical reason why the tissue or organ should not be collected.
If a hospital in the US does not have 95 per cent compliance on these parameters it will not qualify for a federal grant. “Such policies are very helpful,” says Gulati.
Independent regulation of eye banks is needed so that standards and protocols are followed. “Right now there are no checks and balances, which has led to this huge proliferation of eye banks. Standards exist but there is no way to say that they are being followed,” says Biswas.
Finally, the free transportation of tissues by air needs to be made mandatory. Air India and Spicejet carry tissues free. But Indigo refuses to carry tissues and Jet Airways charges. Since the tissue is in a small thermocol box that weighs very little perhaps the Ministry of Civil Aviation needs to step in because it could improve distribution dramatically.
EMOTIONALLY CHARGED TEAM
It is deeply satisfying to help someone see again. SightLife’s successes are built on good management practices, but the organisation seems equally driven by the mantra of feeling good. Its team members are emotionally charged and brim with enthusiasm.
Rakhi Nathawat, manager of the Hospital Cornea Retrieval Programme (HCRP) at SightLife, holds regular training sessions for the EDCs. There is continuous interaction and learning through quizzes and messages shared in a WhatsApp group.
Nathawat, the first woman to work in her traditional Rajasthani family, was a manager at the Eye Bank Society of Rajasthan (EBSR) in Jaipur before joining SightLife. She involved herself with the eye bank because she had time on her hands after completing a Master’s in biotechnology. Initially, she counselled people on donating corneas. Over time she was given a managerial role. She earned very little there but found the work deeply satisfying.
SightLife came in touch with Nathawat when it began partnering EBSR. She has helped build SightLife’s cadre of EDCs who are paid by SightLife and given on lien to partner eye banks. Nathawat stays closely in touch with each one because counsellors need high levels of motivation.
Singh and Thomas are hooked to those bursts of activity that follow calls from surgeons. Singh used to be a journalist and Thomas has a hospital management degree. Prior to SightLife he worked at a key trauma centre in New Delhi and at an NGO spreading awareness of public health issues. In running the Cornea Distribution System there is the thrill of performing under pressure. Swapnali Gogoi as quality assurance coordinator looks closely at what eye banks do in implementing standards. She comes from a quality management background and is also at SightLife out of a sense of public spiritedness.
Over several conversations with us Gulati remains passionate about SightLife’s goals and its role in helping people in eye banking upgrade skills and get better salaries. The manager in him finds fulfilment in such achievements and especially so because they address a public health requirement. As a student in Calcutta, where he grew up, Gulati had helped organise eye camps and volunteered at Mother Teresa’s Home For The Dying. When he returned to India for SightLife it was with a new sense of purpose.
Biswas is an engineering graduate from IIT Kharagpur and an MBA from the Indian School of Business (IBS). He has held corporate jobs in supply chain management and logistics in the past. He is understated and quietly supportive in his style, but, as he opens up, it is clear that his four years spent in SightLife have been a high point.
At the Deen Dayal Upadhayay Hospital in west Delhi we meet Shailendra Kumar Tripathi, Umesh Kumar and Pooja. The three are successful and motivated EDCs with personal stories to tell about their work and what it means to them.
Kumar, 30, wanted to join the Army but didn’t get in. Tripathi, 29, used to be a security guard in a hospital. Pooja, 24, was a desktop publishing operator. It is clear all three have found their metier in being EDCs.
Just hours before we meet at the hospital, Kumar has convinced the family of a labourer, who passed away suddenly, to donate the man’s corneas. The wife was so distraught that it was impossible to speak to her. Kumar explained to others who came with her from a slum where she lived that donating the cornea could give sight to someone else.
An EDC is required to talk to families when they are grieving and often aren’t in the frame of mind to hear about the advantages of organ donation. An innate ability is therefore needed to navigate such delicate situations. But training helps EDCs develop the capacity to be gentle and unobtrusive and yet persistent enough to be successful.
In India, an EDC is expected to network a hospital to know when a death happens since there is no national register of donors of first choice. The next stage is getting in touch with the deceased person’s family. Calls from hospitals can come at all hours. It is the EDC’s job to turn up.
Tripathi recalls how it was the festival of Dussehra and he had just begun his prayers at home when he was informed of a death. He first spoke to the family on phone and then, leaving his prayers unfinished, went to the hospital to speak to them directly and do the paperwork for the donation.
“It is not just the question of getting someone to donate a cornea,” says Tripathi earnestly. “In the approaches we make we are ambassadors for the very idea of eye donation. In the evening that Dussehra when I visited the family of the person whose corneas had been donated, all the family members and their immediate neighbours came out to greet me with their hands folded. They thanked me and said they would register to donate their corneas and encourage others to do so,” says Tripathi.
SightLife has been influential in developing and training allied health persons somewhat in the mould envisioned by the World Health Organisation. The EDCs are an example. Similarly, eye bank technicians have begun to play a more important role by learning to evaluate corneas — there are two at the L.V. Prasad Eye Institute and others at the Shroff Eye Bank and Shankar Netralaya.
Claire Bonilla, SightLife’s chief global officer, was in India to meet partners in Pune, Chennai and Madurai. We talked to her in New Delhi where she held a daylong consultation on strategic plans with SightLife’s Indian team.
Bonilla has years of experience in working in developing countries. She was last at Microsoft where she was closely involved with a lot of the company’s CSR activities.
“We think strategically on building the capacity and capability of a country without a continuing dependence on outside international organisations,” says Bonilla of SightLife’s overarching strategy.
“We build the capabilities and capacities of local institutions whether they are eye banks or hospitals; state and national governments because regulatory policy is very important; and surgeons so as to be able to do their surgery,” she says. “Once we have got that capacity we can actually move on and look at other countries. But it is very important to do it in a sustainable way. The other key thing that we look at is the ecosystem. It is important to know whom to partner with in the value chain.”
Bonilla cites the example of surgeons in India. “There are tremendously talented cornea surgeons in India. I’ve met some of them and seen them operate,” she says. “But there are primary issues that these surgeons face. One issue is innovation. New ways of doing surgery that can help increase the success of the graft.”
SightLife brings some of the top US surgeons over to actually train surgeons in new techniques. “We develop curriculum with local hospitals to fill gaps in training. We have trained 38 surgeons and fellows,” says Bonilla.
Through the eradication of corneal blindness, SightLife seeks to make a much bigger economic impact in the long term. By helping to restore sight it unlocks the capabilities of otherwise healthy individuals and allows them to be productive citizens.
“Curing blindness has a cascading effect. It enables people who are bilaterally blind to rediscover their potential and contribute to family, society and the nation,” says Bonilla.