In the realm of paediatric liver transplants in India, a notable gap persists in comprehensive outcome data, posing challenges to informed decision-making and transparency within the healthcare landscape.
“To address this pressing issue, we advocate for the establishment of a mandatory registry that meticulously records data and outcomes, thereby fostering a more informed and transparent environment for paediatric liver transplants in the country,” recommends Pravin Agarwal, founder, The Pravin Agarwal Foundation (TPAF).
TPAF was founded in 2016 with the mission to support families whose children are in need of a liver transplant in India. Around 92% children, who are in need of a liver transplant, do not receive it, despite transplant costs in India being among the lowest in the world.
As of 2023, TPAF’s support has extended to over 500+ transplants and continues to grow. We collaborate with medical fraternity, hospitals, and crowd funding platforms to assist children in need of liver transplants.
Liver disease has emerged as the 9th leading cause of mortality, with an annual demand for child and adult liver transplants estimated at 25-30,000, significantly surpassing the approximately 1,800 transplants performed annually. However, the gap is most pronounced in paediatric cases, with only around 350 surgeries conducted out of an estimated 3,000-4,000 needed. Key challenges include the reliance on family donors, limited accessibility due to the concentration of paediatric services in select centers, and delays in diagnosis owing to insufficient awareness and diagnostic infrastructure. Despite the relative affordability of paediatric liver transplants in India, the high costs remain a formidable barrier for many families.
Addressing the dearth of awareness surrounding paediatric liver diseases necessitates a multifaceted approach. Primary prevention efforts encompass initiatives such as vaccinations, school health education, and community awareness programmes aimed at empowering communities to recognize early signs of liver issues. Secondary prevention involves sensitizing paediatricians on early diagnosis through regular screenings, enabling disease identification in its nascent stages. Tertiary prevention focuses on managing the disease post-diagnosis, facilitating early referrals to specialized tertiary liver hospitals to mitigate disease progression and improve outcomes.
Agarwal explained that the establishment of a mandatory registry coupled with concerted efforts to raise awareness and enhance access to paediatric liver transplants holds the promise of transforming the landscape of liver care for children in India. Through collaborative endeavors and steadfast commitment, we can chart a path towards improved outcomes and a brighter future for paediatric patients in need of liver transplants.
Navigating the regulatory landscape for paediatric liver transplants in India presents a unique set of challenges, notably the absence of reliable data on paediatric liver disease and transplant activity in the country.
“Currently, obtaining an accurate estimate of children with end-stage liver disease who could benefit from transplantation is virtually impossible. While there's no legislation mandating data submission to the Indian Liver Transplant Registry (ILTR), the Liver Transplant Society of India (LTSI) is encouraging centers to contribute. A notable gap exists in comprehensive outcome data despite a significant number of liver transplants being performed. To address this, we advocate for the establishment of a mandatory registry that records data and outcomes, ensuring a more informed and transparent landscape for paediatric liver transplants in India,” Agarwal emphasized.
TPAF actively collaborates with the medical industry to advance paediatric liver transplant procedures through strategic initiatives. It facilitates ecosystem-level change by partnering with conferences for liver transplantation surgeons, paediatricians, and transplant coordinators, raising awareness about funding availability for paediatric liver transplantations. With a network of over 15 super-specialty hospitals across India, the Foundation supports children threatened by liver disease by providing access to best-in-class liver care and funding for transplants.
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