Dr. Kamath joined CHOP on June 1, 2024, after serving as Interim Head of the Division of Gastroenterology, Hepatology and Nutrition at the Hospital for Sick Children in Toronto, Ontario, Canada. An international leader and world-renowned expert in pediatric hepatology, Dr. Kamath has a special focus on cholestatic and inherited liver disorders in children.
Dr. Kamath recently participated in a Q&A to talk about her vision for the division, the clinical and research areas she’d like to explore further, collaborating with referring physicians, and what she enjoys most about caring for children and their families.
Question: What’s your vision for the future for CHOP’s Division of Gastroenterology, Hepatology and Nutrition?
Answer: The Division of Gastroenterology, Hepatology and Nutrition at CHOP is already a fantastic division and I am so honored and proud to be given this role. The division is undoubtedly one of the top-tier groups in North America. My vision is to put this division on the global stage. Because I have worked in three different countries – with three different healthcare systems – I have a worldwide view of our field with clinical and research collaborations all over the world. One thing I hope to bring to this division is an opportunity to take center stage on the global map, which also fits with the overall mission of CHOP.
Question: What areas of GI research would you like to focus on at CHOP?
A: I want to be able to support and facilitate all the wonderful research that’s going on in the division. We have a very diverse division with people doing all types of research in different super-specialty areas within gastroenterology, hepatology and nutrition. Personally, I’m a liver specialist – a hepatologist – and so my research has focused on cholestatic liver diseases, bile duct disorders of the liver and inherited disorders of the liver. One particular condition I’ve spent most of my career working on is Alagille syndrome and that is incredibly important to this hospital because both of the genes that cause this condition were identified here in Dr. Nancy Spinner’s lab. So, I started my career in Alagille syndrome here, I’ve continued my research for 15 years in Canada, and I am thrilled to bring my research back to the mothership.
Question: What do you enjoy most about working with children with GI, hepatology and nutrition concerns?
A: I appreciate the diversity of problems we encounter. There is a huge variety in the nature of the diseases we see – and more importantly – there have been, and continue to be, substantial advances in therapies. Care of IBD patients is ever-evolving, especially for those with very early onset disease. Liver transplantation is no longer an experimental therapy. It is standard of care. But we’re looking at more innovative ways to transplant children, to get organs and to manage immunosuppressive strategies. And really the future is going to be exploring opportunities like gene therapy.
Question: What are some different solutions for liver transplant that you’ve investigated or used?
A: We already do live donor liver transplants where – typically a parent or another relative – donates a portion of their liver to a child. A program that is very well established in Toronto and has become very successful is anonymous – or non-directed – live donor transplantation where a donor who is not connected or related to the patient donates a piece of their liver in an altruistic fashion. The anonymous live donor program has been incredibly helpful in increasing the donor pool in Canada and could potentially be grown here.
Question: Can you describe a personal or professional breakthrough in your life? How does that impact your work today?
A: I think the biggest personal breakthrough was coming to North America. I am English. I identify as a British Indian. But coming to North America changed the whole trajectory of my career because this is a country where you are always told you can, and this is an institution where I was never held back by hierarchy. I was given so many opportunities. So, to me on a personal level, North America is my new and very much adopted home.
Question: Can you share some details about your personal life?
A: I have two daughters who are at college at the University of Toronto. So, I have a small piece of heartbreak as I feel that I’ve left them, though they tell me that they have left me. But they were both born in Philadelphia. They consider themselves American and I have no doubt they will join me back in this country after they graduate. My husband is also a pediatric hepatologist and did his undergrad at the University of Pennsylvania. So, we all feel very bonded to Philadelphia.
Question: How can CHOP’s Division of Gastroenterology, Hepatology & Nutrition expand its collaboration with referring physicians and potential referring physicians?
A: I think by continuing to be the best – that’s the first thing – so people want to refer to us. And then it’s going to require outreach. We need a personal touch so people feel that as we have gotten bigger as an institution – and a division – that we can still give them that personal touch. The former Division Chief, Dr. [David] Piccoli, is an incredibly warm and connected person and I’d like to build on that – and build on outreach to referring providers in the region and across the country – so people feel if they refer a patient to us that their patient isn’t just lost in the system, but they have a face and a name and a contact to get feedback on their patient’s care. We know that we can provide excellent care, but I think referring physicians want that connectiveness to us.
I’d also like to extend our outreach globally. For example, there are large parts of the world now where you can get a liver transplant – where you can technically get the surgery done – but the post-transplant care isn’t optimal. And that’s what we can provide. We don’t just drop a patient when they leave our operating room. We continue to care for them, and we continue to care for the family. That’s part of our culture at CHOP and within this division: No child is left behind. We will take care of all of them. Building on that availability and connectiveness to other providers is what will help us to maintain and grow our referral base.
Question: What sparked your interest in hepatology and liver conditions?
A: I was very fortunate that very early in my training I spent 6 months at Kings College Hospital, London, which is Europe’s largest liver transplant center. It was a different era when we worked 100+ hour weeks. But taking care of patients with liver disease was extraordinary and the opportunity to participate in a liver transplant was icing on the cake. Joining a family on the journey from diagnosis, treatment and transplant is a privilege.
Question: Can you describe a patient or patient family who had a significant impact on you as a doctor or as an individual?
A: There is patient with Alagille syndrome who I’ve taken care of in Canada. They are an extraordinary family – very dedicated to their child – and he suffered from extreme itching. That’s one of the most serious manifestations of liver disease and Alagille syndrome. You might think it just sounds like scratching, but when I say itching, the child wakes up and there’s blood in their sheets because they’ve scratched so hard that they’ve broken the skin. When your child itches that much, they don’t sleep. And when they don’t sleep, parents don’t sleep so everyone experiences severe fatigue. In addition, the scratching disturbs daily activities and school performance.
So just imagine a family where nobody has had a full night’s rest for years. And the reason that this particular child and family comes to my mind is that we were able to get involved in the development of a new drug to treat the itching. I was able to go to the FDA to advocate for the approval of this drug and he’s one of the first patients I enrolled in the clinical trial. It is a trial that ran across North America. And his itching got better. And his family came to clinic and said to me, “We got a new child.”
He’s now a young teenager. He’s taller than me and everything got better. His itching got better, he slept better, he grew better and he’s just a delightful young teenager. I feel privileged to have been involved in getting the drug approved by regulatory agencies and seeing the direct benefit on my patient. That has been very powerful.
Question: Do you have any key research or clinical expertise you’d like to share with families or staff?
A: I am interested in complex liver disease, inherited liver diseases and the genetic basis of these diseases. I like to think about each child beyond their liver. I have been very interested in the concept of frailty and sarcopenia, which is the concept of weakness and muscle wasting that occurs in association with chronic diseases, including chronic liver disease. It’s important not just to look at liver labs or a liver ultrasound, but to take care of the whole child. I care about the child’s nutrition, their functioning; I care that they go to school and the impact of their disease on the whole family. So, I think if I could project one thing it would be that yes, I am a liver specialist, but I care about your child holistically. And that’s crucial on the journey when you have a chronic disease.
Question: What is the role of philanthropic donors in GI research and care at CHOP?
A: Philanthropy is absolutely crucial. I’ve spent a large part of my career writing grant applications for federal funding and foundations. While I’ve personally had success – and this division has had success – it is a very difficult stream of funds to access, and it takes an enormous amount of effort. And whilst we will continue to do that, philanthropy is an absolute lifesaver to research in the current arena. It really frees up our time and gives us space to be creative. A lot of granting agencies will require you to write a specific grant and then you almost have answered the questions by the time you write the grant. Philanthropic funds allow us to take some risks in our scientific thinking, to think outside the box. Yes, we are accountable to our donors – many of whom have a personal reason for donating – but that accountability is different than when you are getting money from the NIH [National Institutes of Health].
Question: Why is it important to have patients – and their voices – involved in research?
A: Having a patient voice in your research is key. In 2018, I established a global database of Alagille syndrome patients and before we collected one piece of data we sent our case report forms – where we would collect the information – to the Alagille Alliance, a family advocacy group, to get their opinions and feedback. We made changes based on their recommendations. I want to make sure the patient voice is central to any research we are doing.
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Dr. Kamath joined CHOP on June 1, 2024, after serving as Interim Head of the Division of Gastroenterology, Hepatology and Nutrition at the Hospital for Sick Children in Toronto, Ontario, Canada. An international leader and world-renowned expert in pediatric hepatology, Dr. Kamath has a special focus on cholestatic and inherited liver disorders in children.
Dr. Kamath recently participated in a Q&A to talk about her vision for the division, the clinical and research areas she’d like to explore further, collaborating with referring physicians, and what she enjoys most about caring for children and their families.
Question: What’s your vision for the future for CHOP’s Division of Gastroenterology, Hepatology and Nutrition?
Answer: The Division of Gastroenterology, Hepatology and Nutrition at CHOP is already a fantastic division and I am so honored and proud to be given this role. The division is undoubtedly one of the top-tier groups in North America. My vision is to put this division on the global stage. Because I have worked in three different countries – with three different healthcare systems – I have a worldwide view of our field with clinical and research collaborations all over the world. One thing I hope to bring to this division is an opportunity to take center stage on the global map, which also fits with the overall mission of CHOP.
Question: What areas of GI research would you like to focus on at CHOP?
A: I want to be able to support and facilitate all the wonderful research that’s going on in the division. We have a very diverse division with people doing all types of research in different super-specialty areas within gastroenterology, hepatology and nutrition. Personally, I’m a liver specialist – a hepatologist – and so my research has focused on cholestatic liver diseases, bile duct disorders of the liver and inherited disorders of the liver. One particular condition I’ve spent most of my career working on is Alagille syndrome and that is incredibly important to this hospital because both of the genes that cause this condition were identified here in Dr. Nancy Spinner’s lab. So, I started my career in Alagille syndrome here, I’ve continued my research for 15 years in Canada, and I am thrilled to bring my research back to the mothership.
Question: What do you enjoy most about working with children with GI, hepatology and nutrition concerns?
A: I appreciate the diversity of problems we encounter. There is a huge variety in the nature of the diseases we see – and more importantly – there have been, and continue to be, substantial advances in therapies. Care of IBD patients is ever-evolving, especially for those with very early onset disease. Liver transplantation is no longer an experimental therapy. It is standard of care. But we’re looking at more innovative ways to transplant children, to get organs and to manage immunosuppressive strategies. And really the future is going to be exploring opportunities like gene therapy.
Question: What are some different solutions for liver transplant that you’ve investigated or used?
A: We already do live donor liver transplants where – typically a parent or another relative – donates a portion of their liver to a child. A program that is very well established in Toronto and has become very successful is anonymous – or non-directed – live donor transplantation where a donor who is not connected or related to the patient donates a piece of their liver in an altruistic fashion. The anonymous live donor program has been incredibly helpful in increasing the donor pool in Canada and could potentially be grown here.
Question: Can you describe a personal or professional breakthrough in your life? How does that impact your work today?
A: I think the biggest personal breakthrough was coming to North America. I am English. I identify as a British Indian. But coming to North America changed the whole trajectory of my career because this is a country where you are always told you can, and this is an institution where I was never held back by hierarchy. I was given so many opportunities. So, to me on a personal level, North America is my new and very much adopted home.
Question: Can you share some details about your personal life?
A: I have two daughters who are at college at the University of Toronto. So, I have a small piece of heartbreak as I feel that I’ve left them, though they tell me that they have left me. But they were both born in Philadelphia. They consider themselves American and I have no doubt they will join me back in this country after they graduate. My husband is also a pediatric hepatologist and did his undergrad at the University of Pennsylvania. So, we all feel very bonded to Philadelphia.
Question: How can CHOP’s Division of Gastroenterology, Hepatology & Nutrition expand its collaboration with referring physicians and potential referring physicians?
A: I think by continuing to be the best – that’s the first thing – so people want to refer to us. And then it’s going to require outreach. We need a personal touch so people feel that as we have gotten bigger as an institution – and a division – that we can still give them that personal touch. The former Division Chief, Dr. [David] Piccoli, is an incredibly warm and connected person and I’d like to build on that – and build on outreach to referring providers in the region and across the country – so people feel if they refer a patient to us that their patient isn’t just lost in the system, but they have a face and a name and a contact to get feedback on their patient’s care. We know that we can provide excellent care, but I think referring physicians want that connectiveness to us.
I’d also like to extend our outreach globally. For example, there are large parts of the world now where you can get a liver transplant – where you can technically get the surgery done – but the post-transplant care isn’t optimal. And that’s what we can provide. We don’t just drop a patient when they leave our operating room. We continue to care for them, and we continue to care for the family. That’s part of our culture at CHOP and within this division: No child is left behind. We will take care of all of them. Building on that availability and connectiveness to other providers is what will help us to maintain and grow our referral base.
Question: What sparked your interest in hepatology and liver conditions?
A: I was very fortunate that very early in my training I spent 6 months at Kings College Hospital, London, which is Europe’s largest liver transplant center. It was a different era when we worked 100+ hour weeks. But taking care of patients with liver disease was extraordinary and the opportunity to participate in a liver transplant was icing on the cake. Joining a family on the journey from diagnosis, treatment and transplant is a privilege.
Question: Can you describe a patient or patient family who had a significant impact on you as a doctor or as an individual?
A: There is patient with Alagille syndrome who I’ve taken care of in Canada. They are an extraordinary family – very dedicated to their child – and he suffered from extreme itching. That’s one of the most serious manifestations of liver disease and Alagille syndrome. You might think it just sounds like scratching, but when I say itching, the child wakes up and there’s blood in their sheets because they’ve scratched so hard that they’ve broken the skin. When your child itches that much, they don’t sleep. And when they don’t sleep, parents don’t sleep so everyone experiences severe fatigue. In addition, the scratching disturbs daily activities and school performance.
So just imagine a family where nobody has had a full night’s rest for years. And the reason that this particular child and family comes to my mind is that we were able to get involved in the development of a new drug to treat the itching. I was able to go to the FDA to advocate for the approval of this drug and he’s one of the first patients I enrolled in the clinical trial. It is a trial that ran across North America. And his itching got better. And his family came to clinic and said to me, “We got a new child.”
He’s now a young teenager. He’s taller than me and everything got better. His itching got better, he slept better, he grew better and he’s just a delightful young teenager. I feel privileged to have been involved in getting the drug approved by regulatory agencies and seeing the direct benefit on my patient. That has been very powerful.
Question: Do you have any key research or clinical expertise you’d like to share with families or staff?
A: I am interested in complex liver disease, inherited liver diseases and the genetic basis of these diseases. I like to think about each child beyond their liver. I have been very interested in the concept of frailty and sarcopenia, which is the concept of weakness and muscle wasting that occurs in association with chronic diseases, including chronic liver disease. It’s important not just to look at liver labs or a liver ultrasound, but to take care of the whole child. I care about the child’s nutrition, their functioning; I care that they go to school and the impact of their disease on the whole family. So, I think if I could project one thing it would be that yes, I am a liver specialist, but I care about your child holistically. And that’s crucial on the journey when you have a chronic disease.
Question: What is the role of philanthropic donors in GI research and care at CHOP?
A: Philanthropy is absolutely crucial. I’ve spent a large part of my career writing grant applications for federal funding and foundations. While I’ve personally had success – and this division has had success – it is a very difficult stream of funds to access, and it takes an enormous amount of effort. And whilst we will continue to do that, philanthropy is an absolute lifesaver to research in the current arena. It really frees up our time and gives us space to be creative. A lot of granting agencies will require you to write a specific grant and then you almost have answered the questions by the time you write the grant. Philanthropic funds allow us to take some risks in our scientific thinking, to think outside the box. Yes, we are accountable to our donors – many of whom have a personal reason for donating – but that accountability is different than when you are getting money from the NIH [National Institutes of Health].
Question: Why is it important to have patients – and their voices – involved in research?
A: Having a patient voice in your research is key. In 2018, I established a global database of Alagille syndrome patients and before we collected one piece of data we sent our case report forms – where we would collect the information – to the Alagille Alliance, a family advocacy group, to get their opinions and feedback. We made changes based on their recommendations. I want to make sure the patient voice is central to any research we are doing.
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