The incidence of non-communicable diseases is rising in India with diabetes, hypertension, hyperlipidaemia, obesity and now metabolic syndrome. These are silent killers as they often do not display symptoms and are mostly ignored. Unchecked, they result in organ dysfunction and failure. The common organs involved are the kidney, liver and the heart. In certain breathing disorders (Interstitial lung disease), the lungs are affected too. Modern medicine has remedies to prolong life even with organ failure. For example, dialysis does prolong life in those with kidney failure and medical management may prolong the life of a sufferer of cirrhosis, but it is only a bridge. The real answer is a transplant.
Where does India stand when it comes to organ donation?
Organ donation involves harvesting a dead donor’s organs like heart, liver, kidneys, intestines, lungs and pancreas for the purpose of transplanting them into another person who needs them to live. The organ transplant programme in India is under the National Organ and Tissue Transplant Organisation (NOTTO), established as per the mandate of the Transplantation of Human Organs and Tissues Act, 1994, and as stipulated by World Health Organisation (WHO) guidelines.
Tamil Nadu, Gujarat, Telangana, Maharashtra, Kerala, Chandigarh, Karnataka, the National Capital Territory of Delhi and Rajasthan are states and Union Territories having an active deceased-donor organ transplant programme in India. NOTTO has compiled transplant data between 2013 and 2018 and submitted them to the Global Observatory on Donation and Transplantation. During this period, 49,155 transplants were reported in India, including 39,000 living-donor organ recipients and 10,155 deceased-donor organ recipients. These transplants were for kidney (living donor = 32,584, deceased donor = 5,748), liver (living donor = 6,416, deceased donor = 2,967), heart (deceased donor = 895), lung (deceased donor = 459), pancreas (deceased donor = 78) and small bowel (deceased donor = 8).
India sees 17,000 – 18,000 solid organ transplants every year – the most in the world after the US and China, with three quarters of them being performed in the private healthcare sector. The number of patients requiring kidney transplants each year is estimated at 220,000. However, only about 18,000 are performed. Also, about 30,000 liver transplants are required each year in India but we perform around 1,500 on an average. Similarly, 50,000 people suffer from heart failure annually but only 10 to 15 heart transplants are performed.
Tamil Nadu ranks first in India in the deceased organ donor programmes at the rate of 1.8 million population, which is seven times higher than the national average. The current organ donation rate is very poor in India – 0.86 per million when compared with 46.9 in Spain and 31.96 in the US. In the Indian scenario, many cultural and religious beliefs influence the decision-making regarding donation.
Some countries have adopted the policy of “presumed consent system”, which has boosted organ donations. Do you think that India should also adopt the policy to meet the demand?
There are both the living and deceased donor programmes. The first is more prevalent in India but it gets complicated by the illegal sale of human organs. This is a crime and not in accordance with the Transplantation of Human Organs and Tissue Act, of 1994. The answer lies in creating awareness about deceased organ donation.
There are two systems for organ donation practised worldwide, the family consent system and the presumed consent system. Countries like the United States, United Kingdom, Germany and Netherlands follow a family consent system where people sign up as organ donors, and their family’s consent is required. The Organ Donation Rate (ODR) in these countries averages between 10 and 30 per million population (PMP). The more aggressive presumed consent system is adopted by countries like Singapore, Belgium and Spain. This system permits organ donation by default unless the donor has explicitly opposed it during his or her lifetime. This system does not require the family’s consent. It is seen that the ODR in countries adopting presumed consent is double than the countries who have adopted family consent, averaging between 20 and 40 PMP. Inspired by this outcome, the All India Institute of Medical Sciences (AIIMS), New Delhi, has recently suggested starting the presumed consent system in India too, especially in cases of accidental fatalities. Awareness about organ and tissue donations, besides eye and kidney, needs to be intensified.
Despite being the most populated city in India, Mumbai is still lagging behind in organ donation. What is the reason behind it?
Pune leads in Maharashtra. The city has won the award for the highest number of organ donations in the state for two consecutive years, 2020 and 2021. Maharashtra is also doing well and data of 2017 suggests that it is the second highest donor-state in India. However, that does not ease the disease burden. In Mumbai, as per the Zonal Transplant Coordination Centre (ZTCC), 3,325 patients are waiting for a cadaver kidney and 328 for a cadaver liver. The waitlist for small bowels is 7, pancreas 12, heart 28 and lungs is 9. As many as six patients are waiting for both heart and lung transplants while five patients are waiting for a hand transplant. The majority of organ donations are from private hospitals. The need is to create awareness and rise above the many cultural and religious beliefs about disfiguring the body.
Compared to the past few years, people are now more aware about live donations. But when it comes to the concept of brain stem death, people still lack knowledge in this tech-savvy world. Where are authorities lagging behind?
Awareness about organ donation is high in rural India. However, there is a lack of understanding about the concept of brain stem death. Information about the legislation related to organ donation and transplantation needs to be disseminated. Family refusal in a majority of cases reflects poor knowledge and thus warrants interventions at the community level. Signing a “Family Donor Card” may be a way to encourage conversations about organ donations. Taking the message to the youth is yet another way to disseminate information. They can influence the family in taking a positive decision about organ donation.
We need to identify factors that influence a person to move from gaining adequate knowledge and positive attitude about organ donation to demonstrating a behavioural change by signing a donor card. Governmental and non-governmental agencies should clarify issues related to signing these cards. By giving importance to the topic of brain stem death and donation in the medical curriculum, students can be motivated to become ambassadors of organ donation who can also guide their patients and families. Guidelines clarifying the role of nurses and other paramedical professionals in organ donation and transplantation process are required. Targetted health education, behavioural change in communication and legal interventions are key to improving organ donor registrations.
Besides, these programmes are almost negligible in the north-eastern region of India. Formulating and implementing tangible policies for the region is the need of the hour.
A collective approach with political and administrative will, campaigns in print/electronic/social media and active involvement of stakeholders from the health sector, including doctors, might increase the number of people signing up for organ donation programmes. Involve faith leaders in interventions to initiate family conversations regarding organ donation as a service to humanity. An in-depth, pan-India study on the knowledge, attitude and behaviour towards organ donation needs to be undertaken. High-performing states such as Maharashtra, Telangana and Tamil Nadu could share best practices in certifying Body Stem Cell Donation (BSD), counselling families, organ allocation, organ retrieval and transplantation. We cannot head into the next century being an unhealthy nation. And the solution lies in our hands.