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Pediatric Liver Transplant is rewarding because the child can grow up and live a complete life: Dr. Sonal Asthana

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Pediatric Liver Transplant is rewarding because the child can grow up and live a complete life: Dr. Sonal Asthana Shahid Akhter, editor, ETHealthworld spoke to Dr. Sonal Asthana, Senior Consultant, HPB & Transplantation, Aster CMI Hospital, Mumbai to understand the trends and our outreach and challenges in Pediatric Liver Transplant. Edited excerpts:

Where is Pediatric Liver Transplant placed in the list of healthcare today?
So, pediatric lives transplantation is a very rewarding but relatively underserved area of transplantation across the world. Across the world, we have seen the numbers of pediatric liver transplant rise because of more effective diagnosis of pediatric liver disease.
In India, the trend that we see is that diseases present very late because of lack of diagnosis early when disease can potentially be avoided and the second problem that people face is money, affordability of a transplantation. For that reason, India does less than 10% of the number of transplants that could potentially be done for saving children with liver disease.

Challenges that you see in Pediatric Liver Transplant?
The challenges can be broken up into diagnosis, access, counselling, and affordability. Diagnosis is the first one. Most pediatric liver diseases that require children to have a liver transplant are genetic in origin. The common disease is something called biliary atresia, which involves the non-development of bile ducts in a child. These diseases can be picked up relatively early and inexpensively at screening programs. But unfortunately, in our country we do not have established screening program. So, most of these children are not diagnosed on time. For example, biliary atresia, which is one of the common causes for transplantation in children.Most of the children, if they are diagnosed early enough, can undergo a relatively smaller procedure that would avoid or delay the need for liver transplantation. But in India, most children are diagnosed at a stage at which point the liver transplant is not possible. So, early diagnosis with the aid of screening program can change the scenario.

The second thing is awareness. Pediatricians working across the country, both in urban and rural areas do visit ailing children day in and day out. Unfortunately, most doctors themselves are not aware of the technologies and the facilities that are available to transplant very small babies. So, often patients or parents who present to their own doctors for advice do not get it adequately because of lack of general information about the facilities that exist.

Third is counselling. Whenever a child is unwell, it’s a very traumatic time both for the child as well as parents. Most parents require some help in coming to term with the diagnosis and understanding the magnitude of the clinical challenges. So, parents will generally look at a transplantation and they will need to understand what need to be done to take care of a child after the child had such a major procedure. So, the lack of any coordinated effort in this fashion leaves most parents unprepared for the magnitude of the surgery or the challenges ahead of them. Subsequently, a lot of parents give up, they lose hope and they do not take their child forward for access to treatment. So, again we estimate that approximate anywhere between 5 to 10 thousand children require transplant every year while the number of transplants done in India are less than 150-200. So, we are barely scratching the surface of what is required for transplantation in our country at this time.

Tell us about the role of Aster integrated liver care program?
The Aster Integrated Liver Care Program has been set up as an index program which is focused on an anatomic specialty – liver disease. It involves surgeons and medics working together, in coordination, dealing with all aspects of liver disease. This is fairly unique. Normally, we find that surgeons, medics, and different medical professionals work separately, and patients must go to each specialty in rotation. But in this situation, we find that all the specialist come together to deal with a patient with a particular kind of problem. So, apart from surgeons and medics, we have anesthetics, critical care people, counselors, nutritionists, physiotherapists, coordinators who all come together to provide the care that patients need. The Aster Integrated Live Care Program is also different as we care deeply on how we can help our technology and help our skills reach people who are most in need of it. We work towards last mile connectivity in healthcare. There has been a substantial amount of work that has already been done in healthcare which can benefit so many people if it is made accessible to them. So, one of the areas of our focus is on how our skills and facilities that are available can be made accessible to people who are most at need regardless of cost and many of the initiative that we have taken forward actually reflect this particular ethos.

Your association and achievements?
Firstly, we would like to talk about our affordable liver transplant initiative. We realized early on that, although there were several children who were coming forward who needed a liver transplantation, many children chose not to go forward with the liver transplantation because of “lack of money”. Children are very interesting and rewarding group to transplant, because once we do a transplant for a child, a child can grow up into a healthy normal human being and live a complete life with a liver transplantation.

Secondly, in children usually one of the parents is a match as a suitable living donor. So, we do not have a challenge in finding donors. It’s a relatively safe operation for a parent because a small portion of a liver can be removed from a parent and would be appropriate for the child. So often the only thing that limits access to transplantation for children is the lack of money.
One child that we had transplanted very early in our careers had presented to us with acute liver failure, which is a condition that requires transplantation within 5-6 days. Her father was a foundry worker in a factory, he earned Rs7000/month and as it happens, we got an organ that was appropriate for that girl and we transplanted her and then we realize that there was a substantial amount of money that was required to take care of the child. At that time, we reached out to several organization and then we came to understand that it would be possible to raise money to support children like this.

Moving forward we were fortunate enough to work with two excellent groups i.e. Praveen Aggarwal Foundation, (Shri Praveen Aggarwal ji) as well as the Milaap foundation which focuses on crowd funding for children with illness. Working together with these really improved our vision, our world view significantly. Mainly because Mr. Aggarwal is a rare entrepreneur philanthropist, who comes forward with similar focus on improving health diseases. We know that some of the successful philanthropist like Bill Gates, came from a corporate mindset and they bring a certain amount of governance. So, the structure set out by the Praveen Aggarwal foundation as a partner in order create a foundation for affordable transplantation initiative worked very well. With this structure we have been able to offer transplantation to children and families for a cost of 2.5 lacs rupees only compared to the original cost of transplantation which are anywhere between 20-25 lacs otherwise. So, families had to pay only about 10% of the cost of such a transplant and rest of the cost is usually picked up by a combination of donations from the Praveen Aggarwal Foundation as well as crowd funding initiatives from Milaap which our crowd funding partner. So far, we have chance of successfully transplant 38 children in the last 16 months using funds that has been raised from a crowd funding platform as well as through the Praveen Aggarwal foundation.

How do you intend to carry this forward?
This program is very niche and very unique and as we said it was very fortunate that we got a mixture of a clinical team like ours, which had a passion and the commitment to deliver the service, the visionary philanthropist like Shri Praveen Aggarwal who was able to give money and time to put in structure in place which maximized the potential for this and a partner such as Milaap, which has created a unique crowd funding platform which raises money for worthy causes through social media. So, we were able to get together and provide niche care that was required for these children. Now the question is how do we scale it? How do we make it better? Right now, it’s not enough, we know that only one in one in every ten children who require a transplant in India get it. So, how can we make it better?

The first is by identifying the children who are most at need. So, the first biggest thing that we can do to improve the lot of children is to pick them up early and identify children who are most in need of transplant. We should make sure that there is a mechanism for identifying these children, these mechanisms are inexpensive, and they can be done put in place by good public health systems.

Second is counselling the doctors, making sure that doctors are in our peripheries, doctors who at the frontline are trained to identify these patients early, offer parents the solution that they need and provide the support that they need at a traumatic time in their lives.

Thirdly, making sure that there is an effective referral system. As of now we have a number of programs in the country that are offering pediatric liver transplantation; they are still relatively few but there are a few high-volume centers. There are probably less than 6-7 centers across the country that do more than 30 pediatric transplants per year. So, the mechanism of referral system in place where children are identified early, counselled appropriately, and referred to the appropriate place for treatment would actually make a big difference.

The fourth is scaling this program. How do we make sure that this kind of initiative is available to all? The first is that if more business houses, more corporate hospitals join along with Praveen Aggarwal Foundation to increase the size of the corpus; that would make a significant difference. We know that government have mandated that company set article a certain a certain percentage of their profits as the part of their CSR initiatives and that would be something that we are keen to explore, that would significantly increase the corpus that is available to transplant children such as the ones we were talking about.



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