Twitter
Advertisement

Organ donation: When lack of awareness collides with high cost

On Wednesday, a police official in Nerul talked a father out of donating his teenage son's organs, who was declared brain dead following a road accident. The incident has, once again, drawn attention to the lack of awareness about the issue among key players

Latest News
article-main
FacebookTwitterWhatsappLinkedin

In December, Abhishek Jogdandar, 21, died in a motorbike accident. While his family was willing to donate all his organs, calls to Chennai and Delhi failed to find a match, and his heart and lungs could not be donated. In June, two recipient families in Mumbai paid Rs 14.5 lakh for a charter plane to transfer a heart and lungs from Chandigarh in time.

In the meantime, three-year-old Aaradhya Mule in Mumbai waits for a heart. She has been on the waiting list in Mumbai's Fortis Hospital since October 2016 but no organ has matched the requirement. "We went to register at a hospital in Chennai first, but they said they could not do it without examining Aardhaya who was too weak to travel," said her mother, Pratibha Mule. Her parents have lost track of the number of times she has been in and out of hospitals. With multiple organ registries in different states, getting a heart can sometimes be a matter of pure luck.

At the time of donation, police officials are required to sign a No Objection Certificate (NOC). "They interact with the patient's family to ascertain if any malpractice was involved. They provide the NOC and later oversee the post-mortem," said a transplant coordinator at a leading private hospital in the city. On Wednesday, a police official in Nerul went a step ahead and talked the father of a 19-year-old hospital brain dead patient out of donating his organs. The incident brought to the fore the complicated issues related to organ donation. "One needs to focus on awareness among the police. How they interact with the grieving family can at times lead to withdrawal of consent," adds the transplant coordinator who has overseen close to three dozen organ donations.

In the past few years, organ donation centres across Maharashtra have seen a rise, with dozens of transplants being carried out in Mumbai, Pune, Aurangabad and Nagpur. But with 3,200 people waiting for a kidney and nearly 200 for a liver in Mumbai alone, the gap between demand and supply is staggering. The numbers could be higher, say doctors, as most patients simply never register at a hospital owing to the lack of access or high costs.

The story of organ donation in the country is one of extremes. While on one hand, southern states lead the pack, routinely carrying out organ donations; northeastern states are yet to see a single heart transplant in the region.

While India needs an estimated 6 lakh kidney donations annually, only 6,000 kidney transplants take place. The number of heart transplants is just inching close to 500, and lungs is barely a dozen.

Lack of a comprehensive registry

Dr Vimal Bhandari, Director National Organ and Tissue Transplant Organization (NOTTO) said, "Every state has to register with us and show us their waiting list but there are many states like Tamil Nadu who are yet to share their lists with us." NOTTO started functioning only recently, and states with fully functional organ donation programmes have been resisting the sudden interference from the capital.

Most states are averse to providing the lists of donors registered with individual hospitals to regional and state counterparts called ROTTO and SOTTO as there are a lot of unanswered questions about accountability. "We have created the programme painstakingly after so many years and now Delhi wants to dictate terms to us," said a senior doctor who is part of the Mumbai ZTCC (Zonal Transplant Coordination Committee).

So the hospitals register with each of the four zonal ZTCCs in the state that function as independent NGOs with hospitals in the region registering with the respective ZTCC in their area. A patient registered in a zone where organ donation programme is active stands a better chance of getting an organ.

Flying organs across regions

While in Tamil Nadu it is the government that takes care of organ distribution and organs are almost always absorbed in the state, in Maharashtra four regional ZTCCs coordinate organ donation and distribution. Often the recipients pay exorbitant amounts to fly organs from areas like Surat or Chandigarh with organ donors not being available in their hospitals and corporate hospitals rule the roost. "Health is a state issue but the important aspect is that organs should be distributed fairly. At the moment we only have a rough idea of the waiting list but we need data to incorporate it in the national registry," Dr Bhandari said. The government hopes that setting up of NOTTO will help ease the distribution of organs.

Where are the organs?

When compared to rest of the world, India languishes at the bottom of the list. While Spain records the highest — 36 organ donations per million population, India's number has now come close to 1, after hovering around 0.5 for years. For a country with over 1.3 billion people, the number of organ donations taking place is abysmally low.

Merely having a national registry will not solve the problem but getting the system in place will. "I am all for a national organ registry but we need to generate more organs. Kidneys and heart should ideally be absorbed in the same region since they can last only for a few hours and to keep the costs low," said Dr Sunil Shroff, managing trustee of Chennai-based Mohan Foundation that works with governments and private players across the country to increase organ donations.

Currently, only half a dozen states have active organ donation programmes. Most have no infrastructure in place and a majority of patients in need of organs are on no registry at all. "A heart transplant can cost anywhere from Rs 6 to 26 lakh, a kidney transplant Rs 2 to 8 lakh and liver transplant Rs 12 to 30 lakh," said Dr Shroff, stressing on the need to make it affordable to the common man. At the moment, close to 90 per cent of the hospitals are private, while government hospitals form a minority.

Key: Prevention & Awareness

"To improve the rate of organ donation, we need to first create awareness among the people," said Dr P Balaji, Member Secretary, Tamil Nadu Cadaver Transplant Programme. Among the southern states, Tamil Nadu is the pioneer in organ donation. The programme that started in 2008 is overseen by the state government and there are over 1,000 organ donations in a year which is now being mirrored by neighbouring states like Kerala and Andhra Pradesh. "We help our neighbouring states but organ transplant is the last solution to the problem, prevention is the answer. Diabetes and hypertension must be brought under control. Patients should not go to the stage where the only option left is an organ transplant," added Dr Balaji.

Homegrown solutions: Indore & Surat models

While southern states saw their state governments play a keen role, homegrown models in tier-2 cities like Indore and Surat are demonstrating how to carry out organ donations egged on by community involvement.
Indore's divisional commissioner Sanjay Dubey who oversees eight districts in western Madhya Pradesh has ensured that the city has an online portal where donors can register themselves, hospitals can join and doctors can have access to the patients on the recipient list. The process ensures complete transparency.

While the number of permissions required has been cut short, they have also created a society that provides health insurance to two family members of the donor's family. "We also time the organ retrieval in such a way that the organs can be taken through a normal flight and costs patients Rs 8,000 at the most," Dubey said.

In most parts of Gujarat, the organ donation programme is run not by the state but is driven by NGOs. "If the brain dead patient is the primary breadwinner of the family, we look after the education of the patient's children," said Nilesh Mandlewala of Donate Life that has been working in the space for over a decade now. The NGO conducts awareness campaigns across Surat and organs are sent to Bhavnagar, Rajkot, Mumbai and even to Chennai at times.

The onus is on the hospital which has a donor organ available or the medical social workers to call each of the regional organ registries to know if a matching recipient is available in the nearest area.

Need to act fast

Every year, roughly 5.8 million Indians die from heart and lung diseases, stroke, cancer and diabetes according to a latest study that was done by a pharmaceutical company along with the ICMR. The conditions will combine to push the number of patients who will need organs further up. Going forward regions will have to plug the gap in the system to ensure that the rate of organ donation keeps pace with the astronomical demand.

Find your daily dose of news & explainers in your WhatsApp. Stay updated, Stay informed-  Follow DNA on WhatsApp.
Advertisement

Live tv

Advertisement
Advertisement