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40-year-old Shwetha* suffers from acute leukaemia. Her doctor says that she needs a bone marrow transplant, else the chances of her survival are next to none. Battling a life-threatening disease, Shwetha* hopes to find a suitable donor to be able to live her life normally. She soon finds out that her sister, Smita is a perfect match and the doctors encourage her to donate the marrow. “The human body generates these cells almost instantaneously so you will only sense a mild discomfort, nothing else,” Shwetha’s* doctor tells Smita. The sister agrees and Shwetha* is overwhelmed, but her happiness, pretty much like her life is short-lived. Smita’s husband is staunchly against her possible donation, saying he doesn’t feel comfortable with his wife being the donor. The doctors are as baffled as Shwetha*, who continues to fight leukaemia to date. In a country of 1.2 billion people and only 0.08 persons registered as organ donors per million population (PMP), she doesn’t know whether she should be hopeful anymore or not.
“You could be saving someone’s life, even after you have died,” says the petite grey-eyed young girl, dressed in the white T-shirt that reads Jaslok Hospital. “We encourage you to pledge your organs,” she adds with a plastered smile, handing us a form and explaining the procedure. As I clutch the pen tightly in my fingers, putting it to paper, I am reminded of my mother who has battled multiple chronic diseases herself declared a few years ago that she wanted us to donate her healthy organs after she had passed away. I fill out the form, pledging my skin, lungs and kidneys without any hesitation, whereas my friend is still lost in thought. “I do not know if my parents would be okay with it,” she says perplexed. I am not the least bit surprised.
India has one of the lowest organ donation rates in the world. According to a report in the Times Of India, “200,000 people die of liver disease, 50,000 people die from heart disease, 150,000 people await a kidney transplant but only 5,000 get one. Annually, the country sees around 500,000 deaths because of non-availability of organs.”
Ours is a country where death is dealt and coloured with various religious connotations and traditions. When talking about it or even referring to it is hushed and frowned upon, the concept of organ donation is still far from acceptance and approval. Most Indians like to believe that religion forbids them to donate organs. They also feel that a person whose organs have been harvested for donation would not attain moksha (salvation) after their last rites are performed. However, it is not only about religion, argues Sunayna Singh, Chief Executive Officer of ORGAN India (Organ Receiving & Giving Awareness Network), based out of Delhi. “While so many of our beliefs stem out of religious connotations, the sorry state of organ donation in India has to do with a lack of awareness. Hardly anyone is talking about it or actively advocating it. Even the government hasn’t come out with any major campaigns. This is the reason why people believe in myths when it comes to this issue,” she states. Organ Donation is a complicated procedure that only state nodal agencies are allowed to facilitate. Sunanya explains, “There are two different kinds of organ transplant donations. One is the Living Donor Transplant which occurs when a living person decides to donate his or her organ(s) to someone in need. These are usually family members or close friends of the patient. They must meet certain medical criteria and undergo comprehensive medical testing, as required by the particular circumstance, before being accepted as suitable donors.
The second kind is the Deceased Donor Transplant, which is when organs from a brain-dead individual are transplanted into the body of a living recipient. The deceased individual in this scenario can only be a victim of brain death. This kind of transplant initially requires the recipient to wait on a list until a suitable organ is available based on the recipient’s medical profile. The person may or not may have pledged his organs in his lifetime, but the final decision rests with the next of kin. Organs need to be harvested within a few hours after a person has been declared brain dead. During this time, they are put on a ventilator which is when organs can be extracted. But when people look at the patient on the ventilator, they refuse to believe that he/she has passed away. They tend to think that people can recover from brain death. In cases like these when organ donation is encouraged, they feel that the hospital is fooling them. Most people also think, that in case they pledge their organs, doctors would not try hard to save their lives, which is absolutely ridiculous. The family members are also grief-stricken at the moment and thus it gets more difficult to pursue this cause.”
Organ donation in India has many layers of complication. While religion and lack of awareness are at the forefront, one of the major problems happens to be the illegal organ black market that still thrives in the country, making it an easy for organs to be sold and received, despite many rackets being busted in the last few years. These reports constantly do rounds on television and newspapers thus attaching a negative connotation to the concept in the minds of people, rendering them hesitant and helpless. But it is in essence, a vicious cycle. “The need for a black market arises because of the shortage of adequate organs to meet the demand in India,” Sunayna states drawing a shocking parallel. “About 586 airbuses could be filled alone with people requiring organ transplants in India,” she states.
The situation is pretty much the same in all parts of the country with its rural areas being the worst affected. Unqualified doctors, poor networking and connectivity also have a huge role to play in the matching of a suitable organ to the body and facilitating the transplant. Corruption and bureaucracy, as always, too have paved their way in this market thus benefiting the rich and making the less privileged wait for longer.
Back in 2016 when 30-year-old Sunita* from Chennai was diagnosed with Liver Cirrhosis the only way to save her was to get a liver transplant. After approaching the State Nodal Agency in Madurai, she had to wait for several months until a suitable organ was available. Her husband narrates, “Sunita’s wait was not only painful and anxious but also as long as the list. There were so many people on it before her who awaited donors which were well, scanty in number. I remember finally hearing back from them. We were called in only to find out that the liver which was a suitable match for her was actually unhealthy. Our hopes were lifted only to crushed again. We had to wait again for a few more months until the transplant was done with a healthy liver. Though all well that ends well, it wasn’t easy. She was one of the lucky few to have finally found a donor unlike many who lose their lives due to the unavailability of one. Though the transplant was a costly affair, she is able to function quite normally now.”
Dr Rani Bhatia, a psychiatrist based out of Delhi, too had to wait for a long time to find a kidney donor for her husband whose both kidneys had almost failed. “Earlier people would donate out of affection for their loved ones. But it soon became a racket where poor people sold their kidneys and rich people got them. We finally found a family friend who agreed to donate one of his kidneys to my husband. This was before the government discontinued live donors for kidneys to control the illegal black market. Organ donation today has become even more difficult and lengthy now,” she states.
Dr Bhatia actively rallies for the cause of organ donation and has encouraged and facilitated many transplants herself. She feels that more than awareness and religion it is the family dynamics that cause people to be hesitant about the donation. Narrating an incident from her own family, she tells me about how after her father passed away she wished to donate his eyes. “All my sisters agreed except the youngest one who was too emotional at that moment and did not feel right about it. Since we could not arrive at a unanimous decision, the donation was called off. It is something that pains me to date,” she states with despair.
However, things seem to be slowly looking up. When 55-year-old KS Ramesh’s 84-year-old father passed away, Ramesh in that grief-stricken moment decided to donate his eyes. “Though my father never actively spoke about it, I knew he would have been more than happy to donate his organs. I don’t quite know what made me arrive at that decision at that moment, but when I expressed this desire to my other family members, they readily agreed. There was absolutely no dissent except a few people who were hesitant about the procedure and disfigurement of the face. But after some encouragement, they too agreed,” he says. Ramesh’s father’s eyes gave sight to two people however Ramesh says that he wasn’t overjoyed or overcome with emotion. “I felt like it was something we had to do. We were not doing any favours to anyone; we were just practising humanity,” he says modestly.
Sunayna Singh too agrees that she is seeing more young people pledging their organs. “The media is talking about it. There are many NGO’s rallying the cause and films and web series are too being made on the concept making the country more friendly towards this concept,” she states actively. The government too has come up with the Jeevandan scheme. Though change is visible, it is definitely sluggish and passive. Each layer of the complicated procedure needs to be understood and addressed. Perhaps we may not be able to control each and everything but we can start with pledging our own organs and creating awareness and encouraging other people about it.
As I collect my organ donation card and get ready to leave, I look at my friend, Geetanjali Gurlhosur proudly, as she hands over the finished form to the girl. She explains, “I’ve always wanted to contribute to the wellness of society. And now I know I can do it even after I die. Although my family might object to me pledging my organs for donation, I want to do it. I, as a dead body won’t have nothing to lose. But the recipient and the family...they can lose everything!”
*Names changed to protect identity
To pledge your organs and for more details, visit ORGAN India’s website here.
Representational feature via The Indian Express
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