Paediatric Liver Transplant - The Indian Scenario 2018

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May 29,2019
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Paediatric Liver Transplant – The Indian Scenario 2018

Paediatric liver diseases and consequently paediatric liver transplantation in India presents a unique paradox. Thousands of children suffer from terminal liver diseases in the country. A research published in the editorial section of a leading medical sciences journal in November, 2017 asserted that around 3000 children are in need of undergoing paediatric liver transplantation procedures every year in India whereas less than 150 are actually performed. Estimates suggest that a whooping 92% of children that are in need of a liver transplant procedure do not receive it. It goes beyond doubt then that a splitting gap exists between the number of paediatric liver transplants that are need annually and the number of paediatric transplants that are administered.

Challenges to Paediatric Liver Transplant in India

The reasons behind this wide gap include a host of factors like delay in diagnosis, inertia to referring cases that need paediatric liver transplant surgery, concerns regarding post-operative care and long term success and most importantly the financial burden imposed by the costs of paediatric liver transplant procedures on the families of affected children. Prima facie, the challenges to paediatric liver transplant that exist in India may be classified as follows:

Challenges of Availability

Paediatric liver transplants in India are subject to diverse challenges of availability. Some of the major ones are as follows:

First, there are very few paediatric liver transplant centers in India that offer the facility. More over these centers are located in the cities of Delhi, Chennai and Bangalore. The clustering of these centers in urban areas only adds to deprivation of families of affected children in rural areas from liver transplant and widens the scope for entitlement failures.

Second, while the number of liver transplant centers offering adult liver transplant procedures is on the rise, paediatric liver transplant centers continue to be niche. A publication in the Maulana Azad Medical College Journal of Medical Sciences reports that 5 paediatric liver transplant centers conduct more than 20 procedures every year.

Third, given the limited number of paediatric liver transplant centers in India it is a statement of the obvious that the infrastructure, skilled manpower and medical technology required for administering the surgical procedures is over engaged and over used. Thus the list of children awaiting a liver transplant becomes lengthy and immobile. This in turn has the effect of increasing the mortality rate of children on the waiting list.

Challenges of Accessibility

Beyond the challenges of availability of paediatric liver transplant lies the question of accessibility. The major challenges in the current scenario are as follows:

First, a paediatric liver transplant mandates the consent of the family members of the donor. A living donor liver transplant in India is a rather difficult proposition. A paediatric liver transplant calls for a child sized liver or the extract of another child’s liver. The parents of many children often have reservations about agreeing to their children volunteering for liver donation. On the other hand, convincing the parents of deceased children is also a tough ask.

Second, at times the patient’s family itself may not be open to the idea of accepting a liver donation. The family of the child suffering from a terminal liver disease may envisage the option of conceiving another child. In other cases, they may have an aversion to surgery for the sake of the healthy ‘liver donor’.

Third, given that a lion’s share of the paediatric liver transplant centers are located in the cities, factors like rural to urban migration, high costs of living and accommodation in the cities during the tenure of liver transplant and post-operative care drive a wedge between the family of the affected child and the necessary institutional and medical care needed for administering the liver transplant procedure.

Risks Associated with Paediatric Liver Transplant Procedures

The availability and accessibility to paediatric liver transplant surgery procedures notwithstanding, it makes enormous good sense to give due attention to the prohibitive medical risks associated. A research work published by medical practitioners from the Department of Paediatric Surgery and Solid Organ Transplant reported the findings of a study conducted on 43 children aged between 6 months to 12 years. These findings highlighted the following risks associated with successful administration of the paediatric liver transplant procedure as follows:

Bleeding: Five children from the sample were reported to need re-exploration for postoperative bleeding. The bleeding was attributed to arterial anastomosis in one of the children and retroperitoneal veins in another. The source of bleeding could not be identified for remaining 3 children.

Vascular complications: Of the 43 children that were studied, 12 of the children reportedly suffered from vascular complications.

Biliary complications: Two of the children were reported to have concurred late biliary strictures and died of biliary sepsis.

Renal dysfunction: Acute renal failure was seen in 4 patients, which was managed with dialysis.

Challenges of Affordability

Perhaps the most daunting of the challenges that outline the scenario of paediatric liver transplant in India today is the exorbitant cost of paediatric liver transplant that makes it unaffordable for many families of children suffering from end-stage liver diseases. A study jointly undertaken by researchers from the Institute of Liver Disease and Transplantation and the Institute of Advanced Paediatrics reported the following financial and economic challenges facing the families of children in need of liver transplant procedures:

First, financial constraints were reported to be the single most important factor that determined a child’s access to life-saving liver transplant procedures in India.

Second, young parents in the early stages of their professional careers, hailing nuclear families with limited family support and having complete absence or shortage of medical insurance cover for the treatment were found to be one of the most vulnerable groups.

Third, it was submitted by the study that paediatricians are reluctant to refer their patients because of information bias regarding the high success rate of the surgery

Fourth, lack of awareness among the doctors and patients regarding necessary financial assistance was found to be a major deterrent.

Fifth, the following factors were found to constitute the inflated costs of paediatric liver transplants:

1) capital or infrastructure costs
2) cost of the equipment
3) staff salaries
4) consumables

Sixth the following factors were found to determine the total costs of paediatric liver transplants namely:

1) the type of the hospital
2) type of the transplant
3) the length of stay in the hospital
4) the willingness of hospitals to conduct the surgeries at low or no-profit margin

Initiatives to Make Paediatric Liver Transplant Affordable

As on today, the following avenues of financial aid for making paediatric liver transplant more affordable in India are available:

Government Initiatives: Governments in the States of Tamil Nadu and Assam subsidise the costs of paediatric liver transplants.

Corporate Philanthropy Initiatives: The Pravin Agarwal Foundation (TPAF) in collaboration with the global fund raising platform Milaap enables multiple sources of financial aid for paediatric liver transplants. Families of affected people may lean on a crowdfunding mechanism operated by TPAF. In many cases the NGO for liver transplant in India also offers partial or full sponsorship of the requisite outlay for administering the paediatric liver transplant procedure.

Patients in need of support for their liver transplant surgery procedure can reach out to TPAF on the web at www.tpaf.in, subscribe to the TPAF newsletter or write to info@tpaf.in.

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