Increasing the pool of organ donors

Renu Sud Sinha

The Government of India is finally waking up to the dire need of organ transplantation in the country, with just over 15,000 transplant surgeries carried out last year. Nearly 3.27 lakh registered recipients are on the waiting list. Last month, the Centre announced some changes in its policy in order to make organ transplant surgeries easy. This includes removing the age cap of 65 years for organ recipients, doing away with the registration fee for organ recipients and the state domicile requirement in a move towards a single national organ waiting list. Anyone above 18 can donate. The norms have been eased to encourage transplant of organs.

The deceased donors form only a miniscule number of overall transplants. Out of 15,561 organ donation cases in 2022, only 2,765 were cadaver (brain-dead patients) donations.

The organ donation law in India is fairly recent. The Transplantation of Human Organs and Tissues Act (THOTA) came into force in 1994 and was amended in 2011. Under this Act, the government set up the National Organ and Tissue Transplant Organisation (NOTTO) in 2014. It regulates procurement and distribution of organs, along with its five regional (ROTTO) and various state transplant organisations (SOTTO).

In his recent ‘Mann ki Baat’, the Prime Minister had lauded the families of 39-day-old Abadat Kaur of Amritsar and 63-year-old Snehlata Choudhary of Jharkhand, whose decision to donate organs of these two gave life to many persons. The push is necessary as at least 20 organs and tissues can be harvested from a brain-dead person as against living donors, who can only donate a kidney and a part of liver and pancreas.

Eye or cornea transplant remains the most common surgery across government and private sector hospitals, followed by kidney and liver transplant operations. In recent years, there has been a spurt in pancreas and heart transplants as well.

With more than 1.5 lakh road accident fatalities and a rising number of brain-stroke patients, the pool of potential donors can increase.

Dr HS Kohli heads the nephrology department at PGI, Chandigarh, which conducted 41 cadaver organ transplant surgeries last year and harvested a total of 123 organs, benefitting 110 patients. He says that to increase this potential pool, the focus should be on providing optimum medical care, including ICU support to road traffic accident victims and others who need this care. This requires proper medical infrastructure and prompt help, without which it’s difficult to save lives; preserving organs too becomes an impossible task. “There are more challenges. The PGI is the only government hospital in Punjab, Haryana and Himachal conducting organ transplants. The limited life-saving infrastructure has to be shared equally among the living patients and brain-dead donors. The cost of maintaining patients in ICUs is quite high. Brain-dead patients, whose families decide to donate organs, have to be maintained on life-support systems till the organs are retrieved. Sometimes, the donors refuse to receive the organ as the quality of organ is compromised due to medical complications. The Centre, under the National Organ Transplant Programme, does provide some funds but these are much less than the actual cost.”

Dr Ashish Sharma, who heads the renal transplant surgery department at PGI, Chandigarh, which is the ROTTO for North India, says the institution has been conducting cadaver kidney transplants since 1996 and performed over 200 renal surgeries (deceased plus live donors) last year. The liver transplants started in 2011, followed by heart in 2013 and pancreas in 2014. “We conducted 10 pancreas transplant surgeries last year, the highest in the public health sector,” he adds.

As the waiting list of organ recipients increases rapidly, public hesitancy is visible seeing the corresponding number of donors. According to NOTTO, in 2022, the total number of deceased donors was 904 and deceased transplants was 2,765.

MOHAN Foundation is one of the first NGOs working to promote organ donations since 1996. The programme manager, NCR, of the foundation, Dr Muneet Kaur Sahi, attributes this slow increase to three factors. “There is lack of public awareness about organ donation and also the concept of brain death. There are cultural and religious beliefs and the mistrust about the healthcare system in general. There has been a prevalent belief in Indian society about life after death. Many believe organ donation leads to mutilated or incomplete bodies in the next birth. Also, in case of brain-dead patients, it’s difficult to initiate conversations with families because it is tough for them to understand when there is a beating heart, even though on life-support. And lastly, there is mistrust about the premature withdrawal of life-support, questioning the validity of brain-death of a loved one and suspicion about the intended use of organs due to various organ-selling scams in the past.”

Even on the medical side, there are challenges about brain-death declaration that includes a lack of trained professionals. “The hospital may not have organ retrieval or transplant surgeons, or even an advisory committee in place for brain-death certification,” she adds.

This lack of infrastructure and skilled manpower, particularly in the government sector, is noticeable in North India.

Government Medical College, Patiala, the State Organ and Tissue Transplant Organisation (SOTTO) for Punjab, has not conducted any major organ transplant surgery since its inception and is only doing corneal operations. There is no nephrologist in the public health sector. The grant funds received by the Centre have been lying unused. The level of apathy can be gauged from the fact that Punjab’s nodal officer, SOTTO, is not even willing to confirm that Government Medical College, Patiala, is the SOTTO centre for Punjab.

Himachal has two organ retrieval centres at Indira Gandhi Medical College, Shimla, and Dr Rajendra Prasad Government Medical College, Tanda. In any brain-death case, the retrieval team comes from PGI, Chandigarh. The organs are then transported to PGI for transplant through green corridors. Last year, two organ retrievals were done at Tanda. At IGMC, no retrieval has been done so far, though eye transplants are done. Around 300-350 eye transplants have been done since 2010. No private hospital in the state has the retrieval or transplant facility, says Dr Puneet Mahajan, Himachal’s SOTTO nodal officer.

PGIMS, Rohtak, Haryana’s SOTTO centre, has also been conducting only corneal transplants. It recently received permission to start an organ retrieval centre and its director, Dr SS Lohchub, also announced that the institution will start conducting major organ surgeries in the near future, though no timeframe has been given.

More than 80 per cent of organ transplant surgeries are happening in corporate sector hospitals, says Dr KR Balakrishnan, cardiothoracic and heart transplant surgeon, MGM multispecialty hospital, Chennai, one of the leading corporate hospitals conducting major organ surgeries since 2013. “These surgeries need dedicated teams and many specialists. In the private sector, hiring skilled professionals is easy, unlike government hospitals which have a lot of restrictions and rules and, of course, less attractive salaries and limited infrastructure.”

Dr Kohli agrees. “It’s not that young doctors do not want to work in government hospitals but the long waiting period drives them away as they are eager to use their skills.”

As North India lags behind the southern states in performing these transplant surgeries, how can the slow uptake of the cadaver programme be put on a fast track?

More government spend on healthcare is crucial, says Dr Balakrishnan. Despite the pandemic exposing the chinks in the system, there is a decrease in funds allocated to health in this year’s Central budget from Rs 1,07,433 crore to Rs 1,06,654 crore.

Dr (Col) Rajeev Sood, chairman, Maringo Asia group of hospitals, NCR suggests that both government schemes and NGO support is needed as not just operations, but post-operative care is costly. “Most patients need life-time immunosuppressant drugs, which can cost between Rs 10,000 and Rs 15,000 a month. Medical insurance too can help in checking illegal organ sale.”

Dr Puneet Singla, liver transplant surgeon and director, Maringo Asia group of hospitals, NCR, says, “There should be at least three to four organ retrieval centres per district. This would help stop the wastage of viable organs.”

However, it is the awareness at the grassroots that would be the most significant factor. “We need more public campaigns. The best way would be to include it in the school curriculum,” adds Dr Singla. 

How to become a donor

• Anyone above 18 can register to be an organ and tissue donor. Those under 18 need parental or a legal guardian’s permission.
• Live donors: A family member such as a parent, child, spouse, sibling, grandparent or grandchild or someone by the virtue of affection or attachment, such as a friend, a relative, a neighbour.
• Deceased/cadaver organ donation: This is possible in case of brain-dead persons. A person has to register with the National Organ and Tissue Transplant Organisation.
• Even for registered donors, family decision is needed that may over-rule their consent. Discussion with family about your wishes is a must.

Positive numbers

• India ranks third in the world in organ transplantation, only behind USA and China.
• Government support, training of healthcare professionals, public-private-NGO partnerships and public advocacy have enabled the deceased organ donation rate to move up from 0.16 per million population (pmp) in 2012 to 0.65 pmp in 2017.
• Organ donation rate has increased about four times as compared to 2012-13. From 4,990 organ transplants (annually) in 2013, the number increased to 15,561 in 2022 per year.

Deceased donor data for organ transplant presented in absolute numbers & rate at per million inhabitants for 2022

TOTAL DECEASED DONORS 904

KIDNEY TRANSPLANTS 1,589

LIVER TRANSPLANTS 761

LUNG TRANSPLANTS 138

HEART TRANSPLANTS 250

PANCREAS TRANSPLANTS 24

Source: National Organ and Tissue Transplant Organisation (NOTTO), Directorate General of Health Services, Ministry of Health and Family Welfare