Sustainability and Advocacy Lead the Way for Corneal Donation in India

In 1976, India pioneered a National Programme for Control of Blindness (NCPB), the first in the world. But as of 2010, it is ranked second in the world – next to China – with 53,000 people per million suffering from visual impairment. In fact, China and Southeast Asia in general suffer from a significantly higher rate of blindness. 

Even though it was first to the starting line, India has lagged behind the rest of the world in implementing policies and programs regarding eye health. Rakhi Nathawat has been an advocate for eyes all over India for 17 years. She gave a virtual presentation at the recently held All India Ophthalmology Society (AIOS) International Ophthalmic Conclave 2022 on how to optimize India’s healthcare system to better serve the nation. 

United Nations Sustainable Development Goals

She presented her avocation for advocacy in light of the United Nations Sustainable Development Goals (SDGs) and champions for eye health reforms at the national level, stating that countries should adopt a “whole-of-government” approach to vision and include eye care in their implementation of those sustainable development goals. This approach will boost any country’s ability to meet SDG targets. Boiled down, good vision equals good development. 

SDGs # 1, 2, and 8: Economic Recovery

These goals are poverty, hunger, and work and economic growth, respectively. Good vision enhances productivity, raises spending, increases income and provides employment. “It has been shown that providing something as simple as a pair of glasses can improve work productivity by 22%,” said Nathawat.

SDG 3: Health and Well-Being

Few things are as frustrating as ocular problems, so eye health can boost mental health considerably. SGD 3 also has a goal to halve the number of global deaths from automobile accidents. I’m not sure why it is, but the guy at the DMV said I can’t drive without adequate vision. So there must be something to it. 

SDG 4: Education

This goal is to ensure education standards are inclusive and equitable. Naturally, students with glasses digest education materials significantly better than students without. A 2019 World Bank study Looking Ahead: Visual Impairment and School Eye Health Programmes stated: “Implementing school eye health programs at scale should be a priority for ensuring that education systems are inclusive.”

SDG 5 and 10: Reducing Inequality, Gender and General

Just like equality of education, access to health care is lower in vulnerable demographics. Equality in eye care benefits the rich and poor, men and women, rural and urban. Eye care can be poorly integrated into the healthcare system. The way ahead is to stress availability, accessibility and acceptability. Ease of access for all will benefit all by increasing the availability and tracking of viable cornea donors and organizing the system to match them to recipients based on need and distance. 

A Policy Problem in Corneal Donation

Nathawat states that there has been much improvement in laws facilitating a donor system but more needs to be done. Hospital Cornea Retrieval Programs (HCRP) have been shown to be the most effective method to retrieve corneas and other organs by streamlining communication between the hospital and eye banks, easing the ability for banks to counsel donors and families at the right time, and training hospitals to counsel for donations as well. Banks must be able to give precedence based on location, condition of patients, and transport to decide where it goes.

Mandatory death notification ensures that the local donation center is made aware of viable donors in a timely fashion in order to counsel. A required request law more directly mandates that hospitals articulate donation policies, although most hospitals are unaware even when the law is in place. Allowing HCRP programs access to hospitals and mortuaries makes a huge difference. Finally, the ability to give consent over the phone will allow banks to contact donors and family members at the most important and efficient moment. Another related improvement is first person consent, which makes consent legally binding. Therefore, donors cannot change their minds at the last minute and family members cannot renege on a pledge after their loved one passes on. 

A “National Waitlist Registry” must be created to ensure the maximum level of efficiency possible. Creating a framework for the exchange of information will help unite donations with recipients within the two weeks of corneal viability. Some progress has been made by mandating the indication of donation status on identity cards, and this could become an effective stand-in for a national donor registry. 

Catching Up with Coverage

Another important factor shouldn’t be surprising — it’s money. Cost coverage of cornea donation is a “major hurdle in the professional development of eye banks” because their business is not self-sustainable. Cost coverage in the U.S. has expanded from zero to all eye banks in the last 20 years and considerable leaps have been made as a result. In India, donations and government grants cannot cover the expenses required to run a successful eye bank. Indian eye banks must be allowed to charge a corneal processing fee in order to advance and operate. 

Advocacy is the Way Forward

Nathawat closes by listing the key factors for successful advocacy: generations of evidence, credible eye care leadership, engagement with policy leaders, alignment with health and development agendas, and having a media strategy and ambassador. 

India has made progress in corneal transplant but advocating for the fast-tracking of more policy improvements to resolve the problems of corneal blindness is necessary before they can reach their goal. More organizations and advocates must band together to stress the needs of eye banks and patients before the system can truly be optimized. 

Editor’s Note: The All India Ophthalmology Society’s 2nd International Ophthalmic Conclave (AIOS IOC 2022) was held virtually from February 18-20, 2022. Reporting for this story took place during the event. 

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