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Michael Roth, MD, was initially planning to become a community pediatrician. But during his medical training, he developed an interest in pediatric oncology — specifically cancer in adolescents and young adults (AYAs), a group whose specific needs often fall through the cracks.
“Cancer in older adults is more common, while pediatric cancers are just so devastating and impactful. A lot of research has focused on younger kids or older adults,” says Dr. Roth, a pediatric oncologist and professor of pediatrics at the University of Texas MD Anderson Cancer Center. “But adolescents and young adults are this in-between group whose needs have often been under-assessed and under-addressed. That really struck me and is why I came into this field.”
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Dr. Roth leads COG’s Adolescent and Young Adult Committee, working to address those needs and better serve people ages 15 to 39 who develop cancer. He shares insight about his committee and exciting advances in this field.
“We’ve made a lot of progress over the last two decades; 30 years ago, the field of AYA oncology didn’t exist,” he says. “But there’s still a long way to go.”
Adolescents and young adults with cancer have unique needs that are often unaddressed. Can you tell us more about those unique needs?
AYA covers a wide age spectrum, from older teenagers to people in their late 30s. Their caregiver might be a parent, a friend, a partner, a spouse. Some patients are still in high school, trade school or college, some are getting their first jobs and working to become financially independent. Some are building families of their own. Navigating these life milestones is challenging without cancer — and cancer makes everything so much more difficult.
In terms of treatments and care, we’ve known for a long time that AYA participation in cancer clinical trials is low. Clinical trials are the pathway to improving survival, health, and quality of life. So low participation means slow and limited progress for AYAs.
A lot of COG’s AYA efforts are to make it easier for adolescents and young adults to access trials, so more of them can participate in research. Over the past few years, we’ve had some major successes. Right now, we are in a golden age of AYA clinical trials — and COG is leading the way.
“We’ve made a lot of progress over the last two decades; 30 years ago, the field of AYA oncology didn’t exist,” he says. “But there’s still a long way to go.”
Adolescents and young adults with cancer have unique needs that are often unaddressed. Can you tell us more about those unique needs?
AYA covers a wide age spectrum, from older teenagers to people in their late 30s. Their caregiver might be a parent, a friend, a partner, a spouse. Some patients are still in high school, trade school or college, some are getting their first jobs and working to become financially independent. Some are building families of their own. Navigating these life milestones is challenging without cancer — and cancer makes everything so much more difficult.
In terms of treatments and care, we’ve known for a long time that AYA participation in cancer clinical trials is low. Clinical trials are the pathway to improving survival, health, and quality of life. So low participation means slow and limited progress for AYAs.
A lot of COG’s AYA efforts are to make it easier for adolescents and young adults to access trials, so more of them can participate in research. Over the past few years, we’ve had some major successes. Right now, we are in a golden age of AYA clinical trials — and COG is leading the way.
Tell us more about COG’s AYA committee. What is your focus? What are your goals?
Our committee’s main focus is to increase access to clinical trials for AYAs across the cancer continuum, including those who are newly diagnosed, have relapsed, or are in survivorship. These trials aim to improve cancer treatment, supportive care, delivery of cancer care, and long-term health outcomes.
At COG, we work with other committees such as the Hodgkin Disease, Germ Cell Tumor, and Bone Tumor Committees, to make sure that the studies they are leading have the greatest impact across the full age spectrum. This often includes partnering with colleagues at adult cancer centers, from initial study design through study completion, to make sure that these studies are available and accessible to all adolescents and young adults.
Our committee’s main focus is to increase access to clinical trials for AYAs across the cancer continuum, including those who are newly diagnosed, have relapsed, or are in survivorship. These trials aim to improve cancer treatment, supportive care, delivery of cancer care, and long-term health outcomes.
At COG, we work with other committees such as the Hodgkin Disease, Germ Cell Tumor, and Bone Tumor Committees, to make sure that the studies they are leading have the greatest impact across the full age spectrum. This often includes partnering with colleagues at adult cancer centers, from initial study design through study completion, to make sure that these studies are available and accessible to all adolescents and young adults.
"We identified a new standard of care with our adult colleagues and got our patients access to a new therapy potentially a decade earlier than they would have otherwise." - COG AYA Committee Chair, Dr. Michael Roth |
How are we increasing access to clinical trials for AYA patients?
The challenge is that there’s no single barrier to getting more AYAs in clinical trials. It's a combination of many things — whether a trial is available in their area, if a patient can get enough time off work, if they have adequate transportation. And a 15-year-old can face very different barriers than a 39-year-old. A lot of my work over the past decade has been focused on understanding what the barriers are so we can address them and set up our trials for maximum enrollment. |
Sometimes it's a matter of lowering the minimum age to participate in a trial when it's biologically reasonable. Sometimes it's bringing these trials to more hospitals in more areas. We’re also examining how psychosocial barriers like socioeconomic status, geography, and transportation impact participation, and how we can reduce those barriers to get more adolescents and young adults participating in trials.
At COG, we now have more than 120 “AYA champions” across our trial sites. These folks are charged with opening AYA trials in their hospitals and addressing barriers to participation at their sites. So far, this approach has been very effective in getting faster enrollment in clinical trials, better access to new therapies and identifying new standards of care. AYA oncology is all about teamwork and collaboration. Countless kind, dedicated, and hard-working individuals across COG and the adult trial groups have played essential roles in expanding AYA access to clinical trials.
What are some milestones or successes from the AYA Committee?
We recently finished a high-risk Hodgkin lymphoma study in partnership with SWOG Cancer Research Network, an NCI-funded adult cancer group. COG, led by Dr. Kara Kelly and Dr. Sharon Castellino, enrolled about half of the AYA patients in this study. And that led to completing the study a year early. We identified a new standard of care with our adult colleagues and got our patients access to a new therapy potentially a decade earlier than they would have otherwise.
Another exciting advance is a trial led by Dr. Lisa Giulino Roth examining a new treatment protocol for a very rare cancer called primary mediastinal B-cell lymphoma. This is another study where we partnered with the other NCI-funded network groups, which led to rapid enrollment. If we had only studied this cancer in a pediatric population, the study would not be feasible, as it would have taken years to enroll enough patients. So this trial is a real success story about how partnerships between pediatric and medical oncology on trials in rare diseases can lead to faster insights.
Last but not least, COG is leading the first-ever cross-network (pediatric and adult trial groups) supportive care intervention study for AYA patients. Supportive care studies aim to better understand, manage and prevent side effects related to cancer treatment. This study is for AYAs with acute lymphoblastic leukemia (ALL). There is a drug that’s highly effective for ALL, but it causes liver damage in some patients. Led by Dr. Etan Orgel, this study examines if a medicine called levocarnitine could help limit or prevent liver damage in these patients. This is really exciting because it moves us closer to our goal of not only increasing access to studies that directly treat cancer, but also expanding our portfolios to studies that also aim to improve health and quality of life.
What are some milestones or successes from the AYA Committee?
We recently finished a high-risk Hodgkin lymphoma study in partnership with SWOG Cancer Research Network, an NCI-funded adult cancer group. COG, led by Dr. Kara Kelly and Dr. Sharon Castellino, enrolled about half of the AYA patients in this study. And that led to completing the study a year early. We identified a new standard of care with our adult colleagues and got our patients access to a new therapy potentially a decade earlier than they would have otherwise.
Another exciting advance is a trial led by Dr. Lisa Giulino Roth examining a new treatment protocol for a very rare cancer called primary mediastinal B-cell lymphoma. This is another study where we partnered with the other NCI-funded network groups, which led to rapid enrollment. If we had only studied this cancer in a pediatric population, the study would not be feasible, as it would have taken years to enroll enough patients. So this trial is a real success story about how partnerships between pediatric and medical oncology on trials in rare diseases can lead to faster insights.
Last but not least, COG is leading the first-ever cross-network (pediatric and adult trial groups) supportive care intervention study for AYA patients. Supportive care studies aim to better understand, manage and prevent side effects related to cancer treatment. This study is for AYAs with acute lymphoblastic leukemia (ALL). There is a drug that’s highly effective for ALL, but it causes liver damage in some patients. Led by Dr. Etan Orgel, this study examines if a medicine called levocarnitine could help limit or prevent liver damage in these patients. This is really exciting because it moves us closer to our goal of not only increasing access to studies that directly treat cancer, but also expanding our portfolios to studies that also aim to improve health and quality of life.
What are some of the AYA Committee's goals for the future?
Over the next five to ten years, we’ll continue to support and expand enrollment in AYA therapeutic and supportive care trials. We have made a lot of progress yet have so much more work to do to ensure all AYAs have access to life-saving and sustaining trials. Another important focus will be survivorship. Right now, more than 85 percent of AYAs who develop cancer will be long-term survivors. And yet, research has been limited on how having cancer as an adolescent or young adult impacts long-term health and quality of life. So, there are many opportunities to do better for these patients, and that will be a major goal moving forward. |
"I entered this field hoping to make an impact by caring for every patient who came through my door. I never realized that I’d have the opportunity to make an even bigger impact through building programs and supporting trials that serve patients not only in my institution but across the country and around the world. That’s what we’re doing at COG, and that’s what makes this work deeply meaningful." - Dr. Michael Roth |
What’s your favorite part about working with COG?
COG is doing the hard work and knows what it takes to improve the health and survival of children and AYAs with cancer. For me, that’s the beauty of working with COG and under Dr. Doug Hawkins’ leadership. It’s all about collaboration, it's all about doing what’s right for patients. I’ve been so grateful for the relationships and partnerships we’ve built and for the opportunity to work with so many smart, kind, hardworking, and supportive people.
I entered this field hoping to make an impact by caring for every patient who came through my door. I never realized that I’d have the opportunity to make an even bigger impact through building programs and supporting trials that serve patients not only in my institution but across the country and around the world. That’s what we’re doing at COG, and that’s what makes this work deeply meaningful.
COG is doing the hard work and knows what it takes to improve the health and survival of children and AYAs with cancer. For me, that’s the beauty of working with COG and under Dr. Doug Hawkins’ leadership. It’s all about collaboration, it's all about doing what’s right for patients. I’ve been so grateful for the relationships and partnerships we’ve built and for the opportunity to work with so many smart, kind, hardworking, and supportive people.
I entered this field hoping to make an impact by caring for every patient who came through my door. I never realized that I’d have the opportunity to make an even bigger impact through building programs and supporting trials that serve patients not only in my institution but across the country and around the world. That’s what we’re doing at COG, and that’s what makes this work deeply meaningful.