Without the online portal, thousands of transplant patients have to go through a lengthy process to find out what their status on the list is.
The online portal to access the organ transplant waiting list was supposed to be made available in 2018, but there is still no sign of it. The portal will make it easier for the patients who are waiting for an organ, to know where they stand on the transplant list. It would also bring transparency to the whole transplant process.
Jeevasarthakathe is the body appointed by the government of Karnataka to oversee the deceased donor (Cadaver) transplantation programme. It aims to coordinate the cadaver organ transplantation activities and to educate the people on organ donation. In January 2018, Jeevasarthakathe stated that it will put up a portal on its website which will help the patients access the transplant waiting list. It was supposed to have been launched within two weeks of this announcement.
Naushad Pasha, Senior Transplant Coordinator, Jeevasarthakathe, said that the website of Jeevasarthakathe was launched in 2017. He said that since then they have introduced a lot of things, like organ donation registration. He said that the delay in launching the portal for the transplant waiting list is due to a few technical issues. He added that a shortage of IT staff to work on the website is another reason for the delay. “We are planning to implement the waiting list online, but nothing is decided yet,” Naushad said.
Any patient who wants to be on the organ transplant list will have to register with their hospital first. The hospital’s transplant coordinator will update their details in their online registry and then send the application to Jeevasarthakathe. The application will include details like the patient’s name, age, medical history, blood group, etc. The members of Jeevasarthakathe will then verify the application. If the application is approved, then the patient will be put on the waiting list.
Mr. Naushad said that their office receives around 50 to 100 calls every day from patients and their families. Since there is only one office of Jeevasarthakathe, people from all over the state call them. He said that sometimes they do not have enough staff to handle all the calls. They had to let some calls go a few times. He said that having the online portal will make it easier for the patients to access their status. It will help them be prepared for when their turn comes. He added that the portal would help their staff too as they would not have to deal with answering so many calls every day.
Sureka, a nursery school teacher, has been waiting for a kidney transplant for the past two years. She said that every time she or her family want to know her status on the waiting list, the only option they have is to call Jeevasarthakathe. “Calling and having to wait an hour or more every time is tiring. Having an online portal will help us be more prepared,” she said. She added that if she could access her status easily, it would help in making personal decisions too, “Like planning my daughter’s marriage.” She said that being able to keep track of her status online would help her see her progress and make her not lose hope.
However, another senior official from Jeevasarthakathe has a different opinion. She said that though they considered launching the portal in 2018, they later decided to not launch it. The reason for this is that they thought that having complete transparency might cause more problems than it solves. They thought that if the hospitals can see other hospital’s waiting lists, it might cause a conflict of interest between the hospitals. She said that Jeevasarthakathe has no plans to launch the online portal anytime in the future.
Sai Teja, an independent public policy expert, said that having an online portal would certainly be beneficial for everyone involved. “If the list goes online, it will bring transparency,” he said. The patients would have the ability to keep track of their status and hold the authorities accountable. He added that it would digitally empower the citizens and promote e-Governance.
Before the website of Jeevasarthakathe was launched, the patients would have to physically go to their office to know their status. The website made the contact details available online so now they can call the office. If the portal is launched, it would make checking the status much easier for everyone involved, said Naushad.