Jeevandan: patients want organ allocation priority list made public

There is a growing demand among patients suffering from end-stage organ failure on the need to have more transparency in the priority list based on which donor organs are distributed free of cost under the state-run Jeevandan project. At the moment, only hospitals and Jeevandan officials have access to the priority list, while the patients, for whom the list is made, do not have access to it.

“All we can do is enrol in the Jeevandan scheme and wait for a call from hospital. We do not know who else is on the waiting list or how many more are waiting behind or ahead of us. There is no clarity because hospitals seldom disclose such information. It’s all hush-hush and sometimes very frustrating,” says Sujata Patnaik, whose husband has enrolled for kidney transplant at a private hospital in Hyderabad.

Careful planning

According to Jeevandan officials, the whole organ allotment process has been carefully planned in such a way that there is no favouritism or preference to persons needing organs based on their financial status or ability to influence. However, patients and their relatives argue that if that is the case, then what is holding the Jeevandan officials from making the allocation system public.

“Policies that guide distribution of donor organs are always created through consensus building between stakeholders that also includes families of organ donors and recipients. There is a proposal to provide access of priority list to patients and hopefully more such innovative ideas will come up to strengthen organ donation programme,” Jeevandan in-charge Dr. Swarnalatha said.

Guidelines

The usual guidelines for organ allocation are the patient’s medical urgency, blood, tissue and size match with the donor, time on the waiting list and proximity to the donor. Health officials maintained that factors such as patient’s income, influence or any other background play no role in determining organ allocation.

“At present, there is no way to ascertain that all the rules are followed while distributing the organs. Neither the private hospital nor the Jeevandan officials tell us or update us. How are private hospitals and Jeevandan ensuring that the donor organ is reaching the patient who deserves the most?” is a common refrain among families waiting for donor organs.