Partnership models in eye banking – Impact and relevance in Indian context

Abstract

Corneal transplantation is the primary treatment for corneal blindness. While India has made significant strides in developing infrastructure, legislation, and community engagement, persistent challenges such as inadequate infrastructure, uneven legal implementation, underutilization of donor tissues, and regional disparities continue to affect the availability and equitable distribution of corneas. To overcome these barriers, various partnership models, such as Public–Private Partnerships, collaborations with nongovernmental organizations, public charitable trusts, and international agencies, have emerged as effective solutions. These collaborative efforts have strengthened eye banking by improving training, facilitating technology transfers, enhancing community outreach, and ensuring operational sustainability. This study highlights the current state of eye banking in India, emphasizing the critical role of these partnership models in advancing corneal collection, distribution, and transplantation services nationwide.

Corneal transplantation is the main modality for treating corneal blindness and the most common form of transplantation worldwide. According to the data available from various sources, it is likely that India has around 420,000 individuals afflicted with corneal blindness.[1] According to the Rapid Assessment of Avoidable Blindness (RAAB) survey in the years 2015–2019, corneal conditions are the leading cause of blindness (37.5%) in people aged 0 to 49 years and the second most common cause (8.2%) in those over 50 in India.[2] Major causes of corneal blindness include keratitis and trauma.[1] Although there are significant data gaps in the number of individuals who can be treated with keratoplasty, a vast majority can be benefit from surgery.

India has made significant strides in eye banking since the establishment of its first eye bank in 1945.[3] Several measures contributed to the evolution of eye banking to the present state.[4] The early foundation of eye banking rested upon belief, passion, and perseverance of the cornea specialists. The trust and cooperation of the community, the political system, and judiciary were the backbone.[5] The country now has a reasonably well-organized eye banking and tissue distribution system, supported by proactive legislation and government initiatives for organ and tissue donation. This was substantiated in the global survey of eye banking and corneal transplantation across various countries.[6] Overall, the journey of eye banking from early years has been noteworthy, yet several transformational strategies are still needed in advocacy, policies, operational systems, and collaborative efforts in the direction of eye banking.[7,8]

This paper highlights the current models of eye banking in India, with a special focus on the role of partnership models that have helped achieve state-of-the-art eye banking services throughout the country.

Prevalent Infrastructure and Framework of Eye Banking in India

Eye banking in India is driven by activities at eye bank training centers, eye banks, and cornea retrieval/collection centers. There are two main sources for collecting donor corneas: community corneal retrieval (CCR) and Hospital/Mortuary Cornea Retrieval Program (HCRP/MCRP). Voluntary donations through CCR depend on the willingness of families during a period of grief. HCRP has shown promises in improving collection rates by training grief counselors to encourage families to donate.[9,10] Most eye banks rely on both approaches, although one may predominate over the other. Some eye banks are stand-alone, while others are affiliated with hospitals and institutes. Medical colleges and institutes have cornea collection centers that support local eye banks.

The Eye Bank Association of India (EBAI) is a nongovernment organization established in 1989 that serves as a resource center for eye banking activities. Currently, there are approximately 740 eye banks and cornea collection centers registered with the EBAI. The Standards of Eye banking guidelines are released through the National Program Control of Blindness (NPCB).[11] NPCB also provides funding for recurring and nonrecurring expenditures for eye banks.[12] The laws and regulations of eye banks are governed by the Transplantation of Human Organs and Tissues Act (THOTA), and most of the states have adopted THOTA.[13] National Accreditation Board for Hospitals (NABH) is the accreditation body that inspects the eye banks affiliated with hospitals and institutes.[14]

The status of eye banking in India has been disparate. Eye banks located in some regions have been able to collect surplus corneas, whereas there are other regions where the eye banking system is yet to evolve. With the availability of intermediate and long-term preservative media, and implementation of a cornea distribution system since 2012, the distribution of donor corneas has seen a favorable trend nationwide and there has been an increase in cornea collection/utilization at several eye banks when compared to earlier years.[15] However, there still exists a huge gap in the demand and supply of donor corneas in several parts of the country. To bridge this gap and inequitable status of eye banking infrastructure, a comprehensive approach is required, which should include a partnership model to establish new eye banks where needed and collaborative support between eye banks and international partnerships to exchange and upgrade best eye banking practices at the global level.

Present Constraints and Needs in Eye Banking

Increasing demand for corneal transplants

Corneal collections increased from 18,690 in 2001 to approximately 60,000 in 2019, representing a threefold increase. However, the utilization of these corneas has not increased proportionately. Unfortunately, only 2% of EB/EDC are responsible for nearly 70% of the nation’s transplants in a year, and only 14% of the overall EBs have an active reporting system.[16] Also the state laws in Maharashtra forbade distribution of cornea outside the state until recently. It is believed that we need a yearly cornea collection of at least 2 lakh corneas to cater to the perceived need for 1 lakh corneal transplant per year to address the magnitude of corneal blindness in our country.[17]

Infrastructure and resource constraints

Although the National Program for Control of Blindness (NPCB) has supported capacity building efforts,[12] significant challenges remain. One major issue is the lack of common medical standards in most eye banks in our country and insufficient trained staff.[18] Health professionals, including residents, doctors, and paramedical staff, play a crucial role in HCRP, but staff in many HCRP centers are not fully aware or motivated to participate in eye donation.[19] Another problem is the unequal supply and distribution of corneal tissue. Some eye banks and states may have an excess of tissues with difficulties in finding placement in a timely manner, whereas others have very few to meet local needs.[8] The cost of corneal distribution and transport to destinations is also a barrier for many private and government systems. Although a corneal distribution system exists, many government institutions do not accept it because the Human Organ Transplantation Act (HOTA) does not provide clear guidelines for this process. Transport facilities for tissues are also unavailable in many states of India.

Laws, rules, and regulations

Laws promoting corneal donation in India and utilization should be implemented uniformly across all states to transcend regional and geographical boundaries, fostering the concept of corneas as a ^‘national resource rather than a local or regional one. To achieve this, policies such as the “Required Request Law” and “Required Referral Law” should be proposed and enforced with vigor across the country. These laws can significantly enhance CCR and HCRP donations by mandating that healthcare professionals refer cases for corneal donation.[20]

The inclusion of eye donation consent in the Central Motor Vehicle Rules of 2018, allowing individuals to express their wish to donate their eyes via their driver’s license, was a commendable step by the government to encourage eye donation.[20] However, its inconsistent implementation across states has limited its impact. Additionally, integrating the status of corneal donors into the Aadhar card system, which is linked to various national records including health records, such as Ayushman Bharat Health Account no (ABHA ID), could serve as another critical measure in forming a donor registry and better utilization of tissues. The formation of a central waiting list of corneal transplant recipients through the National Organ Tissue Transplant Organization (NOTTO),[13] which is in process, could be a good initiative for the proper utilization of tissues in India. Not only expanding this initiative nationwide but also ensuring rigorous enforcement can dramatically improve outcomes.

Partnership Models in Eye Banking

The World Health Organization (WHO) recognizes partnership models as an important strategy in healthcare, and such collaborations have been beneficial for eye banking in India. By working together with government bodies, nongovernmental organizations (NGOs), hospitals, and communities aim to increase eye donations, enhance corneal transplantation services, and address the significant burden of visual impairment and blindness in the country.[21] That apart, partnership models foster evolution of best practices, dissemination of knowledge, and exchange of technology transfer from one to another. Several partnership models have been working over the years to build strong eye banking infrastructure. Based on the references gathered from various sources and personal experiences, a few of these are highlighted here.

Public–private partnership model

In a Public–Private Partnership (PPP) model, the government is fully responsible for providing services, the public sector maintains ownership of the assets involved, and the types of services offered are based on public needs. The public and private sectors share the risks and benefits of the project. This setup aims to improve service delivery while ensuring that the public interests are protected. The benefits of this model are increasing service productivity, accelerating delivery, implementation of services, cost-effectiveness, the satisfaction of the beneficiary, and opportunities to expand the services.[21]

Partnership models via nongovernment organizations

Numerous social workers and philanthropists have stepped in with great enthusiasm to support and promote eye donation within the community through NGOs. The list of such contributors continues to increase as many organizations and individuals come forward in support of sustainable eye banking.

Lions’ Clubs International in India are NGOs and the second largest group of volunteers in the world after USA with 6335 clubs and 235,000 members.[22] Through their volunteers and partners, they provide support/grant to many eye banks in our country.[23] Their volunteers also help in creating eye donation awareness in the community and act as self-trained grief counselors in the community at the time of death with helps in increasing CCR.

Rotary International is another NGO that helps spread eye donation awareness in the community and has contributed to establishing quality eye banks in our country, such as Rotary Netradarshan eye bank in Belgaum,[24] Rotary eye bank in Bhuswal,[25] Maharashtra, and Rotary Arvind International Eye Bank, Madurai,[26] which is one of the best examples of eye banks having maximum CCR.

Partnership models with public charitable trusts

The Hans Foundation (THF) is a public charitable trust that collaborated with eye banks in India, earlier through the former Sight life, US,[10] and then with the LV Prasad Eye Institute (LVPEI),[27] to establish and support eye banks across the country, particularly in locations such as Rishikesh, Varanasi, and Guwahati, with the goal of increasing access to corneal transplants and reducing corneal blindness through a PPP model, which included funding the setup and operations of these eye banks while relying on LVPEI’s technical expertise in eye banking practices.

International organizations

Founded in 1969, SightLife was a nonprofit global health organization dedicated exclusively to eradicating corneal blindness, in both the United States and worldwide. As one of the leading eye bank organizations in US, it collaborated with eye banks worldwide to build capacity and provide training for eye bank professionals such as medical directors, managers, counselors, technicians, and corneal transplant surgeons through keratoplasty workshops. This ensured the availability of high-quality donor tissue, scalability, and sustainability of eye banks in India.[28]

Case Studies of Successful Partnership Models in Eyebanking

Rishikesh eye bank

The Rishikesh Eye Bank (REB) was established in January 2019 through a PPP model. An MOU was signed between the All-India Institute of Medical Sciences, Rishikesh (AIIMSR), LVPEI Hyderabad (RIEB), and THF. THF provided essential recurring and nonrecurring funding for the eye bank, while LVPEI provided the design of the physical space, equipment, SOPs, and training for the first four counsellors cum technicians. A state-of-the-art quality eye bank was inaugurated on August 26, 2019, meeting the international standards of eye banking. This was followed by continuous monitoring and evaluation by RIEB for the first 3 years before being handed over to AIIMS Rishikesh for ongoing operations.

The local needs and functions related to eye banking regulations were managed by the Institute (AIIMSR), which obtained the necessary permissions for HOTA from the state. The institute also secured blanket permission from the highest police official of the department of police in the district for collecting corneas from medico-legal cases and coordinated with the forensic department. Permissions for pollution control, biomedical waste disposal, and fire safety were already in place. Additionally, the Department of Ophthalmology engaged with local NGOs and hospital staff to conduct awareness programs in the community and in the hospital for CCR and HCRP, respectively, to promote the initiative.

Over the past 5 years, the REB has successfully procured 920 corneas, with 70% (638 corneas) coming from HCRP and 30% (282 corneas) from voluntary donations. Notably, 66% (420 corneas) of hospital donations were from medico legal cases. The Department of Ophthalmology at the AIIMSR performed 540 transplants during this period, significantly reducing the waiting list. Additionally, REB has distributed 172 corneas to cornea surgeons throughout the state of Uttarakhand, with a utilization rate of 70.14%, which is higher than the national average.[29] With the help of the three parties, it was possible to change certain policies of the eye bank over the years according to the local needs to improve cornea collection and utilization.[27]

International collaborations

Global partnerships provide an opportunity to bring in newer initiatives and practices for eye health. This is crucial for building uniformity in the standards of eye banking at the global levels. These collaborations have become increasingly important when support is needed for technological advances in eye banking practices. Some examples are highlighted below:

• i)RIEB collaboration with International Federation of Eye and Tissue Banks (IFETB) and Sightlife, USA

  In 1989, the year of inception of Ramayamma International Eye Bank (RIEB), at LVPEI, supported by IFETB, Baltimore, USA, played a key role in developing and implementing basic standards and protocols for eye banking. Continued collaboration in the early years helped in procuring equipment and technological training and support for corneal preservation techniques.[9] This extensive support from IFETB allowed RIEB, in turn, assist other eye banks in India during the early stages of eye banking by supplying MaCarey Kaufman medium free of cost, contributing to the sustainability of eye banks across the country.

  In 2010, RIEB signed an MOU with Sight Life, USA, which was another significant step toward making India an international hub for excellence in eye banking standards. Collaborative efforts of Sight Life with RIEB helped in capacity building, providing training to eye bank professionals and corneal surgeons across the country, and establishing infrastructure for pre-cut tissue preparation for Descemet stripping endothelial keratoplasty.

• ii)Sight life collaboration with Other Eye banks in India

  SightLife helped transform health systems and combat preventable blindness to restore sight across India in collaboration with 23 partners, including eye banks, hospitals, government organizations, nonprofits, and the Eye Bank Association of India.[30] In 2016, SightLife joined hands with King George Medical University (KGMU) and The Hans Foundation (THF) to establish the KGMU UP Community Eye Bank, a state-of-the-art facility in Uttar Pradesh. The eye bank was established to offer comprehensive services, such as family counseling, cornea recovery and processing, tissue distribution to surgeons, and training for technicians and surgeons. Before the support services, 650 transplants were performed annually in Uttar Pradesh. Thereafter, the eye bank facilitated over 400 transplants in its first year and, to date, has provided corneal tissues for more than 1350 sight-restoring surgeries.[31]

• iii)Indo-German Giz Collaboration:

  This collaboration between the German Society for Tissue Transplantation (DGFG) and Shroff’s Charity Eye Hospital (SCEH) aims to enhance corneal donation and eye banking infrastructure in Delhi. Supported by the Hospital Partnerships funding program and implemented by the German Society for International Cooperation (GIZ GmbH), this project exemplifies how two leading eye bank institutions from different regions can exchange best practices in eye donation, eye banking, and research.

As part of this initiative, two catchment areas for corneal collection were identified, and the information management system was upgraded to monitor the progress of these collection centers. Within a few months, 79 donor corneas were collected, of which 63 tissues were successfully utilized. This collaboration serves as a model for how best practices can be shared, adapted, and expanded across different regions of the world.[32]

Relevance and Impact

Sustainable quality eye banking practices require good infrastructure, funds, trained staff, and ongoing community engagement and awareness. Government sectors face challenges in the long process of procurement and staff recruitment, whereas the private sector faces sustainability problems due to a lack of funds, making the process costly to the beneficiary. In addition, different regions of India have varying cultural, social, and economic needs. Partnerships allow for tailored approaches that make services more accessible, economical, and effective. Partnership models of eye banking in India are essential for meeting the growing need for corneal transplants and combating visual impairment. Enhancing awareness, increasing accessibility, and capacity building of local eye banks through these collaborations can have a profound impact on donor cornea availability, ensuring that more individuals can receive the gift of sight. Future strategies should focus on strengthening this partnership and exploring innovative ways for community awareness to increase eye donations across nations.

Challenges in Partnership Models

While partnerships in eye banking have helped significantly in addressing capacity building in eye banking, there have been challenges in distribution and sharing of donor cornea pool. Efficient redistribution of tissues from relatively higher-availability to lower-availability regions is constrained by logistical and financial reasons. Poor road and air connectivity in several remote areas significantly hinders timely transport of tissues. Some regions such as the North-Eastern states, Andaman and Nicobar Islands, Lakshadweep, and Jammu and Kashmir are most affected with these challenges.[33] The high cost of air transport—currently approximately ₹6000–8000 per shipment—places a considerable financial burden on eye banks and, in some instances, on patients. Although Air India previously facilitated free transport of donor tissues, this concession was discontinued following the merger of airlines. Road transport remains a less viable alternative, as individuals and transport agencies often decline to carry donor tissues due to the absence of explicit provisions or legal safeguards for such transport under the THOTA. Additional common factors that affect equitable redistribution include limited surgical activity during weekends, public holidays, festivals, and ophthalmology conferences, leading to delayed utilization and potential wastage of preserved tissues even within the mutual partners leading to substantial inefficiencies in the national distribution network for donor corneas. Effective ways of navigating such challenges requires a thoughtful collaborative approach with support from state directives and private sectors together.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.