Oncothon: Pediatric Cancer Drug Development

Oncothon is a telethon spanning 24 hours, dedicated to gathering donations for childhood cancer research. Professor Rashmi Dalvi, a world-renowned pediatric oncologist and past president of SIOP Asia, will introduce us to pediatric cancer drug development.

Speakers

Rashmi Dalvi currently holds the position of Professor and Head of the Department of Pediatrics and Pediatric Hematology-Oncology at the Bombay Hospital Institute of Medical Sciences.

Additionally, she serves as a Visiting Consultant at NH-SRCC Children’s Hospital and the PHO-BMT Department of LTMG Medical College Hospital in Mumbai.

She has been actively engaged with organizations like SIOP (International Society of Pediatric Oncology) and has held various leadership positions, including Continental President for SIOP-Asia from 2018 to 2021.

Notably, she played a crucial role in founding the SIOP-India project and has been an integral part of the Pediatric Oncology in Developing Countries Committee since 1992.

Previously, Dalvi has taken on roles such as Chair of the National PHO Society of India (2009-2012) and Chair of the SIOP-PODC Committee on Education and Training (2010-2013).

She has also contributed significantly to the organization of conferences, serving on local organizing committees for events such as SIOP Asia 2002 in Delhi and SIOP 2007 in Mumbai, as well as chairing the LOC for the Virtual SIOP Asia 2020-21 Conference in Mumbai.

Currently, she holds positions in various committees, including the SIOP-PARC Steering Committee, Vice-Chair of the SIOP Membership Committee, and as a founder member of the Asian Pediatric Hematology Oncology Group (APHOG).

Additionally, she serves on the ICON Ethics Committee and the Stem Cell Committee at King Edward Memorial Hospital.

Moderator

Gevorg Tamamyan is the Editor-in-chief of OncoDaily, Head of the Pediatric Cancer and Blood Disorders Center of Armenia, Chairman and Professor of the Department of Hematology and Pediatric Oncology at Yerevan State Medical University, Dr. Tamamyan has also been elected as the President of SIOP Asia 2024 and the Pediatric Oncology East and Mediterranean (POEM) Group.

0:18 Introduction

1:10 Prof.Dalvi’s speech

11:02 Final words from Prof.Tamamyan

The Transcript of Oncothon: Pediatric Cancer Drug Development

Gevorg Tamamyan: Professor Rashmi Dalvi, who is a world-known pediatric oncologist, SIOP-Asia past president. She was a pioneer in the development and promotion of pediatric hematology oncology subspecialty in India. She was the chair of National Pediatric HemOnc Society in India and led many committees within the International Pediatric Oncology community.

I’m giving the floor to Professor Rashmi Dalvi to share her experience on pediatric oncology developments over the decades. And, I would ask you to talk also specifically about the pediatric cancer drug developments and why we are lagging behind. And if there are, I mean, what kind of disparities there are in the field,

Rashmi Dalvi: Right. So thank you. And first of all, congratulations on organizing this Oncothon. It’s a great concept to raise awareness on childhood cancer. And, also congratulations on the great progress you and your colleagues are doing in Armenia. Also, a big thank you to OncoHeroes Biosciences for taking up the cause of drug development for childhood cancer.

So, I have had over 40 years of experience in pediatric oncology in India, which is an LMIC, as you know and, as you know, demographic trends indicate a rising incidence overall in LMICs, where about 80% of childhood cancer occurs. And, it is estimated that, over 6 million cases we will see in the next 25 years and nearly half are going to go diagnosed.

And the five-year net survival is going to be estimated to be less than 40%.

And the challenges that I’m going to mention today are something which most LMICs would be encountering, and these are related to patients, then the patients who come for diagnosis, their care, enabling their care survivors and then research and innovation. So with respect to patients, the first problem that we encountered, and we still continue to encounter to a great extent, is lack of awareness.

First of all, that, cancer can occur in children, and this lack of awareness is both in the public as well as in primary care physicians, you know, pediatricians and general practitioners.

Second, lack of awareness that childhood cancer is curable.

And, so and the third, third problem is that, in many, of our countries, the diagnosis of cancer is a sociocultural stigma, and they don’t like to talk about it. All this is compounded by barriers to access to care. And, this results in delayed diagnosis and advanced disease at presentation, which makes it more difficult to treat at a broader level. You know, we, there are weak health care systems in LMICs that are competing national health priorities, you know, poverty and hunger, environmental disasters, political crisis, war, and also that, you know, developing drugs for pediatric cancers, which is a small percentage of cancers overall, is not great business sense, you know, is what it is looked at.

So, as far as, you know, the challenges that we face, we face this with respect to diagnosis, coming to the care of these patients. One major problem we face is treatment refusal or abandonment. And this is largely because of the cost of treatment. You know, because insurance often is not available, a lot of out-of-pocket expenditures. There’s family dislocation because cancer is treated only in large metropolises.

And so they have to travel, dislocate the whole family and travel, a long way for treatment. This is compounded when we are treating patients by malnutrition, infection, very high level of drug toxicity that we see. And this results in higher morbidity which translates into greater mortality and also is another cause for abandonment of treatment.

So the bottom line for everything is resource restriction. So there’s limited diagnostics, limited healthcare, manpower, expensive protocols that are used, expensive supportive care that is needed. Hospital infrastructure often is not ideal or available. The other thing I want to say is that in LMICs, the first chance for treatment is the best chance. So you have to give the best possible treatment at the first shot. Because salvage treatment for refractory relapse disease is difficult and is a much bigger challenge. So, this is about, you know, the care of patients.

And then, of course, you know, we have, survivors and there are challenges that are faced by survivors, with respect to rehabilitation and even, survivorship is also a stigma that many of our survivors do not follow up because they don’t want to let anyone know that they have had cancer in the past, even if they are cured. Insurance is a problem for them. Rehabilitation. So they do not come back, for all the survivorship, survivorship, health issues and so on.

So these are the various challenges that we face. And, regarding what you said about drug development. Yes, it is a major challenge because there are very few people like Oncoheroes that, you know, come across who are willing to, you know, work for, developing drugs for childhood cancer. For all the various reasons that I mentioned. It’s not good business sense. It’s a very small segment.

Also, most of the childhood cancers are treatable by, few simple drugs, which also some of these pharmaceuticals are not willing to continue manufacturing. So, these are some of the problems, but everything is not so dark. So, you know, I just want to give, if you give me two more minutes, I can just give you the story of how India has developed pediatric oncology over these four decades.

So the same pattern, probably, and pathway exists for such countries. So basically, first of all, you have to have a pediatric oncology community So physicians, surgeons, and healthcare professionals interested in treating children with cancer coming together for this cause.

And, so now we have a much larger community. Initially it was just, physician, I mean, pediatric oncologists, a few surgeons and radiotherapists. Then networking and collaborations are the next thing that, you know, came our way and, our interactions with SIOP and, SIOP UDC pediatric oncology in developing countries, as it was called then, So gave us a good platform for discussing our problems and getting help from them. Likewise, networking collaborations also come across with through institutions, in developed countries, through mentors, that we may have had when we have trained as well as through philanthropic organizations.

So all these collaborations and networking helped us to develop the infrastructure and the possibility of treating childhood cancer well. Then the next step was to identify what problems that we had and try to find out solutions. So we found that, you know, delayed diagnosis abandonment was our biggest problem. So we developed a program for training pediatricians to help them, you know, diagnose early. And we got help, financial help from SIOP and W.H.O. for the same. Over time then we had improved supportive care. We had adapted treatment protocols.

Then we developed a training program in pediatric oncology to help, you know, increase the tribe of pediatric oncologists in our country. Then came, you know, the era of, NGOs funding and national schemes, came up, you know, money started coming from various sources. So that helped improve various things. Then, you know, data is everything, you know, so unless you are able unwilling to share your data and work together, it will not work.

So the next step was, you know, people got together to share data. And then we have developed this Indian National Pediatric hematology oncology group. Now we have got into clinical trials and things like that.

So we have improved a lot. In the sense that from our, survival rates of, like between 10 and 20% 40 years ago, we are now, you know around 40% or a little more and even better in some of the institutions, but some diseases and groups, are still not doing well, whereas some diseases and patient groups are comparable to Western, standards, you know, now, even newer therapies, bone marrow transplantation, immuno-oncology, these are expensive.

But through these, you know, funding agencies, we are able to give it it is not available for every single patient that needs it. But from a place where we were, where nothing was available, we have our own, you know, colleagues from the Tata Memorial hospital who have developed Car-T cell therapy locally indigenous.

So I think these are some of the things to do, that research. And there are barriers to research as well. And, some of these barriers are that, you know, because of the high research needs money. That is the bottom line. But second thing is, because of the high patient load, clinicians do not have that, you know, protected time for research. Okay. And, most of the research happens in developing, developed countries for, at another level altogether.

But what we need is innovations and research to find local solutions to our problems, which we can then share with you know, other LMICs. So, research is something that is needed and, even drug development. And, of course, there is a lot of awareness and conscience about pediatric drug development, but it’s still a long way to go. And, you know, people like, OncoHeroes, I think I hope there are more heroes of this kind in the world.

So I’ll just end by saying that, my message is that childhood cancer is curable. Today no child should die of cancer without being given the chance to be cured. And every single person can help make a difference. Let us all help navigate these families through their cancer journey and enable a healthy and able survivorship. Thank you.

Gevorg Tamamyan: Thank you very much, Doctor Dal, before bringing the perspective from the LMICs. And like showing also the other side of the coins. And thank you for your positive note at the end.

I’m sure together we will be able to make a lot, a lot of changes when our community is united. And I’m sure this Oncothon is one of the examples where we can show this shared commitment. Thank you very much.