Amid COVID, centre’s conflicting guidelines were disastrous for India’s eye-donation programme
“She had a great desire to give her eyes to someone to see the world and inspire others,” Nasir Mohammad, a 47-year-old resident of Dwarka, told me about Priya Nasir, his recently deceased wife. “She took a pledge about donating her eyes in 2001. She even made me promise that I would see her pledge fulfilled.” Priya died on 17 April, amid the nationwide lockdown to combat the coronavirus pandemic. On the same day, Nasir, along with Poonam Tyagi, an activist who works with visually impaired people, approached four eye banks, including the eye bank at the All India Institute of Medical Sciences, Delhi. However, none of them allowed Priya to donate her eyes because no elective surgeries were allowed during the second phase of the lockdown.
Incongruent and conflicting guidelines by India’s health ministry and key organisations under it have brought India’s eye-donation programme to a complete halt during the lockdown. During this period, doctors I spoke estimated that several thousands of people who wished to donate their eyes to help solve India’s growing problem of corneal blindness, have been unable to because of a lack of government initiative. Senior ophthalmologists based in Delhi told me they were unable to honour the last wishes of several patients who had pledged their eyes for donation. Activists and doctors said that the continued lack of clear guidelines coupled with poor central funding for eye donation shows the government’s apathy for both eye donors and the corneally blind.
In April 2019, Priya was diagnosed with an advanced stage of lung cancer. She had been regularly going to Rajiv Gandhi Cancer Hospital in Rohini for her treatment. “She was doing well with the treatment with her regular follow up, check-up with the doctor and medication,” Nasir said. “However, the situation started changing after 22 March, when all out-patient services in all hospitals were suspended due to COVID-19 and lockdown across the country.” On 9 April, Priya was admitted to Aakash hospital, in Dwarka, with severe pain and breathlessness. She died in her second week at the hospital. The clock on her donation immediately began ticking. A donor’s eyes need to be donated within six hours of their death for it to be viable for implantation.
Throughout her last two weeks, Nasir told me, Priya was determined to ensure that her eyes would be donated after she passed away. Priya worked closely with Tyagi toward this end. On 11 May, Tyagi wrote a letter to Prime Minister Narendra Modi asking for the process of eye-donation to be allowed during the lockdown. On 13 May, she received a terse reply from the directorate general of health services under the health ministry, which said, “Your concern for eye banks during the lockdown for increase in eye donation for control of corneal blindness in the country is highly appreciable. But due to the Corona Pandemic the collection of Corneas from those who have died at home (Status of corona infection being unknown) carries a risk of getting Corona infected Corneas and its transmission to the recipient.”
On 4 May, another man in Tyagi’s locality who had opted for eye donation died. “It’s very sad to see that in a country where there are so many blind people looking for a light of relief in their life and where people like Priya, who actively pledge their eyes for a cause, eye-donation takes a back seat and priority is being given to liquor shops,” Tyagi said. She was referring to an order, issued by the Delhi government that allowed liquor shops to reopen from 4 May while elective surgeries still remained banned.
On 30 March, the National Organ and Tissue Transplant Organisation, a national body under the health ministry that oversees organ donations, issued a set of guidelines that only called for precautions to be taken for organ transplants. In a section titled, “Deceased Donors,” the guidelines stated, “A rigorous epidemiological survey should be conducted among potential donors and their families.” The guidelines only warned, “Individuals who have been exposed to a confirmed or suspected COVID-19 patient within the last 14 days, who have returned from nations with more than 10 infected patients and those whose cause of death was unexplained respiratory failure should not be accepted as deceased donors.”
Priya had not previously been in contact with any COVID-19 patient or suspect and had not travelled to any other country. She also tested negative for COVID-19 on 7 April and 15 April. Under the NOTTO guidelines, she should have been able to donate her eyes. The guidelines also clearly stated, “No suit or legal proceedings shall lie against any person for anything done or intended to be done in good faith under this suggestions/advisory unless proved otherwise.” However, contradicting NOTTO’s own guidelines, Vasanthi Ramesh, the director of NOTTO, told me on 6 June, “There was temporary suspension of transplant from 30 March. This was as per the first NOTTO transplant specific guidance on COVID-19.”
A senior ophthalmologist from AIIMS told me on the condition of anonymity that the staff at the hospital’s eye bank were asked not to come for work from the start of the lockdown. They had been informed that on 31 March, the health ministry would issue fresh guidelines on how the process of eye donations could continue. No clear guidelines have arrived yet. The current guidelines are vague about whether a COVID-19 test is required and do not explain how these would be provisioned or funded.
“I was surprised that in such a huge system and in hospitals like AIIMS, eyes cannot be donated,” Tyagi told me. Referring to the reply to her letter to the prime minister, she said, “They expressed the technical side, yet I am not very much convinced.” Several doctors I spoke to agreed that donation was not only technically possible during the coronavirus pandemic, while taking precautions, but that not doing so would be a major loss. “Yes, at least the retrieval of eyes from especially non-COVID patients who died because of other diseases, as in this case, after taking all precaution in terms of the COVID-19 safety measures, is definitely possible,” Dr Rajvardhan Azad, a former professor of ophthalmology at the Rajendra Prasad Centre for Ophthalmic Sciences in AIIMS, Delhi, told me. Azad is also the secretary of the SAARC Academy of Ophthalmology, a professional body of eye surgeons in the South Asia region.
“As regards transplanting these eyes, it could have waited as there is risk of COVID-19 virus penetrating the corneal layers or stroma in technical term,” Azad said. Azad said that most often it is the cornea of donated eyes that are used. Since the cornea receives a limited supply of blood and gets its oxygen from the air instead of the bloodstream, it does not pose problems of differing blood types. “This makes it an ideal organ to be transplanted,” Azad said. “Only corneal blindness can be treated with eye donations. The eyes donated by one person can be given to two people. To decrease the rate of corneal blindness, only one eye is transplanted. Thus, just with one act of charity, two people benefit.” He explained that excepting a few conditions such as HIV and hepatitis, regardless of the condition of the donor’s health, an eye donation is never refused. He added that even if the eyes cannot be used to provide sight to someone who has corneal blindness, they can be used for research or medical education.
“I have had occasion of getting phone calls from many patients,” Azad told me. “One such patient from Mumbai who had comorbidities like diabetes and hypertension called me. He had lost vision because of bleeding over the retina and couldn’t be attended to. Because comorbidities involved high risk and a fear of getting COVID-19, he was refused surgery. Of course, late surgery or delayed surgery does lower the success rate in terms of vision for the patient.”
A June 2016 article in the Times of India said that there are fifty thousand eye donations in a year in the country. Each of these donations would give two eyes, which could help approximately one lakh corneally blind patients. Azad also told me that 90 percent of corneal transplants are successful and help in restoring complete vision. Of the 4.5 crore visually impaired people in the world, nearly a third are from India. In India, there are an estimated forty six lakh people with corneal blindness that can be cured by corneal transplantations. “Just the stoppage of donations from the start of the lockdown in March, till now, could have lost us anywhere between fifteen and twenty thousand corneas. That is twenty thousand people who could have had vision if this was planned better,” Azad said. He added that each year an additional thirty-five thousand people are affected by corneal blindness in the country.
On 8 May, the health ministry issued a fresh set of guidelines under the National Plan for Control of Blindness and Visual Impairment. The new guidelines permitted elective surgeries, but clearly stated that eyeball retrieval from home would not be allowed. They allowed for the restarting of the Hospital Corneal Retrieval Programme, or the retrieval of eye balls from willing donors who had died in hospitals, but the guidelines did not state whether deceased patients needed a COVID-19 test to be able to donate. The ministry did not provide funding for COVID tests on willing donors. Eye ball donation has not restarted even in premier institutions like AIIMS.
The senior ophthalmologist from AIIMS said that some ophthalmic surgical procedures at the hospital were still happening. Emergency eye surgeries have continued after 31 March. However, elective surgeries have become harder to handle during the pandemic and the AIIMS administration formulated new rules to manage them. “We categorise elective surgeries into those in which admission is not required and those where it is, which is usually when there is a serious risk of infection,” he told me. “For patients who are admitted and are suspected of possibly having COVID, we can test for the virus. But for those who are not admitted, the government has not made it clear who will bear the costs of the test. And without a test, the government has told us we can’t accept eye donations.”
The eye surgeon pointed out that without clear government support and funding it would be unwise for them to begin eye-donation procedures. “If a regular surgery has a one percent fatality rate, COVID-19 can take it up to about 25 percent,” he told me. “Just in our centre, there are between one thousand and one thousand five hundred eye donations every year, and we have to foot the bill for both the donation, which is entirely free, as well as COVID-19 tests, that is not something we can easily bear. For the government, this would be just a small part of the funds they have, but clearly their inaction shows that we aren’t seen as a priority for them.”
The surgeon told me that after the initial announcement by the government, calling for a halt on elective surgeries, several doctors had approached the health ministry and requested them to allow the continuation of the HCRP. The HCRP is entirely hospital based, and would retrieve corneas from willing patients whose entire medical history is known. In such cases the hospital can minimise the possible risks from COVID-19 infection.
“But even after the talks we held the ministry has not laid down any clear guidelines about HCRP,” the surgeon told me. “They could have at least laid down a guideline which prescribes a COVID test for all donors so that we can undersign that cost and make sure that we have the ability to treat corneally blind patients. Our staffs are scared, but even with the chances of asymptomatic patients giving us the virus, they are still willing to even go to patients’ homes and take donated eyes. But without any clear guidelines or permissions what can we do?”
The surgeon told me that given that many in the ophthalmology department were worried about what the complete absence of eye donations for four months could mean for India’s already struggling battle against blindness. They had started formulating internal guidelines about they could take in restarting eye donations. “But we can’t formalise the guidelines we have been working on because the ministry has not made it clear to us that they will foot the bill for COVID tests for willing donors,” the surgeon told me.
There seems to be no change of policy from the ministry of health to facilitate the process for eye donation. When contacted over email about the conflicting guidelines and lack of provisioning for eye donations, Preeti Sudan, the union health secretary, did not respond. For many, this seems to dishonour the memory of their deceased loved ones. “My mother always believed that helping others would bring her immense joy,” Tehreen, Priya’s daughter, told me. She said the failure to be able to donate her mother’s eyes felt like a sad loss and a deep betrayal. “I feel sorry that I couldn’t manage the eye donation of Priya,” Tyagi said. “That will remain in my heart as a constantly burning question. Why couldn’t they make it possible?”