Liver diseases cause approximately 259,749 deaths in India every year. According to World Health Organization’s latest data, the numbers translate to three per cent of the total cases of mortality in India. The Directorate General of Health Services, Government of India, reports that 200,000 of the total number of fatalities caused by liver diseases can be attributed directly to cases of liver failure and that an astounding 10-15 per cent of these people can be saved through on-time administration of liver transplant.
Paediatric liver disease is one of the least recognised causes of mortality in India. Thousands of children in India – from newborns to teens – suffer from various forms of life-threatening liver diseases. Estimates suggest that 92 per cent of children who are in need of a liver transplant do not receive it due to a variety of reasons.
Requirement of a liver transplant for newborns
A number of diseases mandate a liver transplant. These include jaundice, hepatitis B and C, biliary atresia, genetically acquired liver diseases, fatty liver condition, benign liver tumours and liver cancer. If conventional lines of treatment fail, children suffering from advanced liver diseases may also need a liver transplant.
A reality check of paediatric liver transplant surgeries in India
The gap between paediatric liver transplant surgeries needed and the ones receiving it is alarming. Approximately, 3,000 children in India need a liver transplant every year but only one in 20 gets access to it. This is despite the fact that liver transplant procedures in India are relatively more affordable than in other countries. Where are the gaps? What is keeping children in need of a liver transplant surgery disenfranchised? What makes children one of the most vulnerable groups with regard to inaccessibility of liver transplants?
Issues and challenges to paediatric liver transplant
In India, liver diseases and related liver transplant is an area which hasn’t been largely touched.
Firstly, paediatric liver transplant is premised on the paradigm of liver donation. Child liver recipients need child-sized livers or only a part of an adult donor’s liver. A lion’s share of paediatric liver transplants in India is facilitated by living donors. In most cases, these living donors are among the family of the child. However, convincing adults who do not share a direct family relation, still remains a challenge. The lack of awareness surrounding the concept of a living donor leaves much to be desired.
Secondly, the awareness and attitude towards paediatric liver donation continues to be poor. While medical science allows the liver of a recently deceased person to be transplanted, convincing a prospect’s family to volunteer for donation is difficult. This results in a poor deceased organ donation rate. Combining the first and the second factor leads to a high imbalance between the demand and supply of paediatric livers.
Thirdly, liver transplant as a line of treatment is highly time-bound. Add to that the fact that newborns and children often have lower immunity and resistance compared to adults. It is necessary that the donor liver be procured and transplanted on time. The lack of organised systems for paediatric liver procurement from donors, serves to expand the turnaround time.
Fourthly, although liver transplant surgeries in India are inexpensive in comparison to other countries, it is still beyond the reach of several families. The diverse economic profiles of parents of children in need of a liver transplant and lack of health insurance cover, make for a big driver of entitlement failure. In several instances, families that are economically underprivileged find it difficult to find the right sources of financial aid for paediatric liver transplant.
Ensuring better liver transplant for children
It becomes difficult for the families to reach out to the right institutions and platforms that can mediate between them and liver transplant centres. While heart, kidney and liver are critical organs, liver transplant costs the highest. Addressing all these challenges, we instituted The Pravin Agarwal Foundation (TPAF) to develop an ecosystem of liver care in India.
TPAF is a philanthropic organisation that makes paediatric liver transplants more accessible. It supports children with access to quality liver care and transplant. TPAF has identified a two-pronged approach to bring a visible change at the ground level:
Financial aid for paediatric liver transplant patients in India
TPAF provides insurance and gap funding, if crowd-funding goals aren not achieved. TPAF has created a mechanism where the costs are split between the family of the patient, the hospital partner, crowdfunding, driven by Milaap and TPAF itself. Based on TPAF research on paediatric liver transplants, we decided to:
- Design a model of healthcare targeting children in need of liver transplant.
- Engage with diverse stakeholders including liver donors, financial donors and liver transplant centres in the entire process, as an enabler.
- Identify and assess the rootcause of the high costs of liver transplants and systematically address it. We found that the post-operative cost being imputed into the liver transplant budget was a significant driver of the inflated costs borne by the families of affected children.
- Underwrite the post-operative costs and reduce the final incidence of outlay by approximately 50 per cent through our innovation, thereby bringing down the total budget required in many cases from Rs 25-30 lakh to Rs 12.5 lakh.
- Leverage a disruptive and technology-driven crowdfunding model to achieve targeted levels of financial help for liver transplant. This enables sharing of costs among the patient, healthcare institutions, Milaap – our crowdfunding partner and TPAF.
Our collaborative and agile methodology has allowed us to distribute the costs of liver transplant, reduce turnaround time for raising funds and allowed families of affected children to get a greater leverage in engaging with healthcare administrators to reduce costs of liver transplant surgeries.
In cases where crowdfunding has fallen short, TPAF has stepped in to address the funding and insurance gap. More than the financial aid, the model has served to foster greater community action and galvanised efforts of individuals and institutions from different quarters.
Success stories
Take the case of Madhumita from Karnataka who was six when she was diagnosed with liver failure and prescribed a liver transplant. TPAF engaged with her parents, collaborated with Milaap and coordinated efforts with Aster Hospital where she underwent a successful liver transplant surgery.
Another success story is that of 10-year-old Fatima who was diagnosed with decompensated liver and prescribed a liver transplant surgery. We stood by her from fundraising and liver transplant surgery to recovery.
The success stories of these children have given us a new hope and has enabled us to build traction and scale to support more children in need of liver transplant. Since inception in 2016, we have supported nearly 100 paediatric liver transplants across India and our goal is to reach 200 paediatric liver transplants by the end of 2020.