The Kerala State Organ and Tissue Transplant Organisation (K-SOTTO), the apex organisation which regulates organ donation and transplant in the State, is in the process of drawing up standard operating procedures and protocols to streamline unrelated ‘altruistic’ organ donations in the State, so that no commercial motives are served and the welfare of organ donors are not ignored.
The State allows a person with end-stage organ failure to receive an organ (only a kidney or part of the liver) from a person who is not related to him, purely on altruistic grounds. These organ donations from unrelated persons take place after the scrutiny and approval by district-level authorisation committees (DLACs). However, in reality, apart from examining the documents submitted before it, the DLACs can in no way ensure that money does not exchange hands.
There have been several instances when the DLACs objected to unrelated donations, pointing out the economic and social disparity between the donor and recipient or other suspicious circumstances. But in every single instance, the recipient’s family has gone on appeal to the court and the latter, on humanitarian grounds, has approved the organ donation.
Of the 1,000-odd organ transplants that take place in Kerala every year, approximately 600-700 transplants involve unrelated living donors. And almost all donors are in the 25-35 year age group and from a vulnerable background.
Cross-checking details
“We need to ensure the safety and welfare of organ donors and at the same time take care that their vulnerability is not exploited in the name of altruism. They need to be followed up long term and their health care requirements should be met through a government health insurance scheme. Hence we need to put in place proper systems, documentation and transparency in altruistic donations. The State had made an attempt towards this through a government order (GO) in 2018, but it never went forward in practice,” says Noble Gracious, Executive Director, K-SOTTO.
“We need to empower the DLACs by giving them more domain knowledge and bringing in clarity on the documentation and procedures they have to follow. Clear-cut systems need to be put in place for cross-checking the particulars of the organ donation so that the committee can take fair decisions, which will stand the scrutiny of the courts, “ Dr. Gracious says.
For true altruistic donations to take place, without serving commercial motives, there needs to be a lot of checks in place.
Registry of prospective donors
The GO of February 2018 (Guidelines for altruistic and exchange donations) spoke about creating a registry of prospective altruistic donors under the supervision of Kerala Network for Organ Sharing (KNOS- which maintains a registry of patients waiting for organs) and removing the direct link between donors and patients.
The GO also stated that all prospective donors be made aware of the inherent risks before getting proper informed consent from them. The prospective altruistic donor will have the freedom to choose the hospital where he wants the transplant done but will have no say on the patient to whom his organ will be donated.
Limit in compensation
Most importantly, the GO spoke about limiting the compensation due to the potential donor to a fixed amount for his loss of income during the convalescent period alone, while providing lifetime healthcare for the donor by including him/her under some health insurance scheme of the government.
Though the GO refers to voluntary altruistic donations, none have come forward during all this time, willing to be registered as potential donors under KNOS — this in itself belies the argument about ‘altruistic” donations.
The GO, issued five years ago, is yet to be implemented. The follow-up care and welfare of the “altruistic” living donor is one aspect which seriously needs to be addressed in the State as a priority. The hospitals where the transplant was done often have no details on the donor.
Sources in the Health department point out that one reason why none in the government or any of the political parties have come forward in support of regulating live, unrelated donations is because most of them have given letters of recommendation to end-stage patients at some point, in support of pushing through an “altruistic”, live unrelated organ donation.
The State should be putting all its might behind Mrithasanjeevani, its cadaver organ donation programme so that there is equity in organ donation and every patient, rich or poor, can receive organs on a priority basis.
