The Regional Organ and Tissue Transplant Organisation for western India is clamping down on Gujarat’s system of organ donations, insisting that the state set up a transplant authority to direct the distribution of organs retrieved for transplants.

Gujarat has been a leading centre of organ donation despite having few transplant centres and no state-level transplant authority. The state also does not maintain registries of potential organ recipients. On May 9 this year, the director of ROTTO for western India Dr Astrid Lobo Gajiwala wrote to Gujarat’s additional director of Medical Education and Research Dr MM Prabhakar, asking that Gujarat form a State Organ and Tissue Transplant Organisation.

The government notified the Transplantation of Human Organs and Tissues Rules in 2014, which mandates that all transplants in the country must be regulated by a national, regional and state organ and tissue transplant organisations called NOTTO, ROTTOs and SOTTOs respectively. SOTTOs should be linked to hospitals, organ and tissue matching laboratories and tissue banks within their area and also to the regional and national transplant authorities. SOTTO is supposed to decide the allocation of an organ to be shared based on registries of potential organ recipients. Recipients for cadaver organs, for instance, are prioritised based on how unlikely they are to get living donors. The rules also give a sequence of allocation of organs according to registries maintained – state list, regional list, national list, person of Indian origin, foreigner.

Since notification of the rules in 2014, the NOTTO and the regional regulators have been set up and six states have set up SOTTOs. Gujarat is not one of them.

In the absence of a SOTTO, Gujarat does not have such a registry of recipients. “We don’t maintain a list as of today,” said Dr MM Prabhakar, Gujarat’s additional director of Medical Education and Research. “All the donated organs are allocated to the Institute of Kidney Disease and Research Centre, which maintains its own waiting list [for livers and kidneys].”

The Institute of Kidney Disease and Research Centre is a hospital and transplantation centre in Ahmedabad run as a public trust.

In her letter, Gajiwala has said that Gujarat must set up a SOTTO at a registered transplant or retrieval centre and that funds from the regional transplant authority will only be released to the government account of the SOTTO.

Sending organs to other states

Gujarat has always had a significant number of cadaver donations but official numbers are not available as state authorities do not maintain records of such donations. When made repeated attempts to get the total number of organ donations in Gujarat, state government officials only said that the data needed to be collected after which it could be shared. Many of the organs retrieved from cadavers are sent for transplants in Maharashtra, especially to private hospitals in Mumbai. However, under the new transplant rules, ROTTO is the authority for transfer of organs between states. Once a SOTTO verifies that there are no recipients for the cadaver organ within the state where it has been retrieved, ROTTO takes charge to find a recipient in other states in the region. But in the absence of a waiting list, it is unlikely that the Gujarat government can accurately verify that there is recipient for the organ in the state.

“We have asked Gujarat several times to have a system as they are offering organs out of state,” said Dr Vimal Bhandari, director of NOTTO. “Gujarat does not share any data with us about cadaver donations and organ transplants.”

However, Prabhakar said that his office gets in touch with hospitals and ensures that no recipient is available before an organ is offered outside the state.

Yet another problem that ROTTO has with Gujarat’s transplant system is the lack of authorised transplant centres and hospitals allowed to harvest organs. In the absence of a SOTTO, there is no authority to confer recognition on such facilities. To send an organ to another state, ROTTO said, can only accept organs retrieved at recognised facilities. “The organ has to be retrieved at a hospital which is authorised by the state government to do so,” she explained.

As a result of the absence of a SOTTO in Gujarat and ROTTO’s insistence on the new rules, retrievals of cadaver organs in Gujarat might have fallen.

According to the non-government organisation Donate Life, which facilitates organ retrievals in Surat and other parts of Gujarat, the state Gujarat offered 14 cadaveric hearts to Maharashtra between 2015 and 2017. Since June this year, the NGO has not facilitated any organ retrievals for when they have not been able to find recipients within Gujarat, said Nilesh Mandlewala, founder and president of Donate Life. “We had eight cadaver donors in Surat this June but we couldn’t facilitate any heart donations as there were no matching recipients in Gujarat,” he said.

Role of the NGO

A ROTTO official also told that that the Gujarat government allows Donate Life to be involved in organ allocation, which is not in accordance with transplant laws.

Donate Life acts as a link between an organ donor and a recipient. According to the organisation’s website, it receives calls from ICUs , hospitals and trauma centres about patients who have been declared brain dead. The organisation’s volunteers then meet the patient’s family to convince them to allow the patient’s organs to be retrieved.

Mandlewala said that Donate Life is not involved with the allocation of organs. “We inform the Institute of Kidney Disease and Research Centre [about available cadaver donors] and they allocates the organ to the patient on their waiting list,” he said.

Officials in Gujarat and activists working to promote organ donation said that until the waiting list system is put in place, several organ retrievals may not occur, increasing the wait for people seeking life-saving organ transplants.