My name is Lia Goh. I am 12 years old and I am a cancer survivor.
When I was three years old, I was diagnosed with acute lymphoblastic leukemia. I went through three years of treatments, including chemotherapy. I lost all of my hair; it almost grew back blonde!! And I received more blood transfusions than I can remember.
In fact, I don’t remember a lot about my cancer or its treatment.
Like how my parents had to take leave from work and my family rented an apartment in Toronto because I spent most of that first year in the hospital. Or how I was in isolation for a lot of that year. Or how I spent so much time in bed that my muscles atrophied, and my dad had to carry me everywhere.
I am old enough now to realize how lucky I am. I am lucky to have the support and love of family and friends. I am lucky that my parents had the freedom and the financial means to take the time off work to be with me. Many families don’t have that luxury. I am lucky to have benefitted, and I will continue to benefit, from the support of some incredible organizations, such as POGO.
And my dad always says that I am especially lucky to have benefitted from so many kids that came before me. From the research that has been done, and so many incredible services that have been created to support kids with cancer, their families and survivors like me.
From the time my brother and I were little, my dad would read a poem to us called “The Champion’s Creed.” In it, there is a line that has always stuck with me:, “Dedicate yourself to a mighty purpose.”
I can’t think of anything more mighty than helping to beat childhood cancer. So, I feel responsible to do as much as I can for all the kids who are fighting this battle now and all who will be fighting it in the future.
Watch Lia deliver her full speech here. Video courtesy of Natasha McKenty.
You’re young and recently wed. You’ve started a family and are trying to make ends meet financially. You used to think eating lunches out was a big expense. Now there are diapers, special food, daycare, sports and other activities, and the need for more space! Hiring a sitter so you can go to dinner and a movie costs more than the dinner and movie! Your spending priorities have shifted but for the most part you’re managing.
Then your eldest child starts to bruise easily, gets fevers often and doesn’t want to eat. Over a relatively short period of time you are told your child has cancer. Leukemia. You’re assured that survival is good and your child has a good chance to beat this. But the treatment hospital is over an hour’s drive away. You have to plan for many nights in the hospital; and your first stay will be weeks long. Either you or your partner has to stay with your ill child while the other is at home with your youngest. Travel-related expenses, including meals and accommodations, increased daycare costs and the realization that one of you won’t be able to go back to work for what will likely be a long time. Ugh. Of course you don’t think much about finances at the start. You are focused on keeping everything together and making sure your ill child will survive. But slowly the costs become apparent. The credit card bills roll in. So much for managing.
This is a common storyline among families of a child with cancer. Although most of the treatment is paid for by the government or private insurance, there are large costs associated with a child’s cancer care, the largest most often being a loss of nearly half the family income due to one parent leaving the workforce. This is a well-known issue among researchers. They know the financial costs in the early part of the diagnosis and treatment are huge. But what researchers haven’t figured out is how families do in the long term. What is the financial health of the family three, five or 10 years after the diagnosis? Does this kind of health crisis turn into a chronic financial condition for the family? Does the family ever recover financially?
New research by POGO is linking data from its cancer registry (POGONIS) to copies of Canadian tax returns stored at Statistics Canada. Families who experience a diagnosis of childhood cancer are being compared to families who do not experience cancer and are similar in age to the parents, in number and age of the children, where they live and income at the time of diagnosis. The researchers can then follow both family types over time and compare what likely ‘could’ have happened to the cancer family financially to what did happen.
This research is ongoing—the comparison families are now being identified—but so far we can see that a child’s cancer diagnosis stalls household income growth for about a year after the diagnosis, after which household income continues to climb. Of more interest is that families whose child dies after the diagnosis start their family life with lower household income compared to families with children that survive, after which the household income follows the same pattern of income growth. More on this story is yet to come, as this research will also examine the financial impact of the difference in cancer type. Stay tuned!
Dr. Jason Pole is the Principal Investigator on the study Long-term Economic Consequences of a Childhood Cancer Diagnosis. He is Senior Scientist with the Pediatric Oncology Group of Ontario; an Associate Professor in the Dalla Lana School of Public Health, University of Toronto; Adjunct Scientist with The Hospital for Sick Children Research Institute; and Adjunct Senior Scientist at ICES, Toronto. Dr. Pole has a background in epidemiology and health services research with an emphasis in the use of administrative data and complex survey instruments.
Related Resources
“Financial Hardship in Adult Survivors of Childhood Cancer,” presentation at 2018 POGO AfterCare Education Day. Download PDF
In September 2018, at the launch of the new POGO Pediatric Oncology Satellite Clinic at Peterborough Regional Health Centre (PRHC), Theresa Serracino-Inglott, husband Mario and son Anthony spoke on behalf of the parents and young patients who will be receiving care.
Last year in late August, Anthony was gearing up to start his Grade 11 year when he was diagnosed with acute lymphoblastic leukemia (ALL). Anthony spent most of his first six months at SickKids hospital because of complications and an extremely tough protocol for his high-risk diagnosis. Throughout the past year – and more so in the last six months – the Pediatric Outpatient or POP Clinic at PRHC has been our second home.
In April, Anthony was here for supportive care close to 20 days, and every day he was greeted with a smile and the exceptional care we have come to know from Shay Cannon and the POP Clinic Team. This was such a relief because as parents of children with a cancer diagnosis, we are continually being bombarded with difficult and gut-wrenching fears – and leaving the safety of SickKids Hospital is one of them.
Having to take your child to a new place for their care and allowing unfamiliar medical staff to provide treatment leaves us parents feeling vulnerable and scared – but once we walked through the doors of the POP Clinic and met Shay and the POP Clinic team, our fears subsided. Anthony immediately made a connection with the staff that has only strengthened over the months. Being closer to home to attend to such things as his fevers and blood work has meant a lot to Anthony. When he was admitted with a fever and had to stay at PRHC for more than a couple of days, it meant that his friends could easily come and keep him company to pass the time.
Throughout this time, the POP Clinic team was already beginning the transition to become an official POGO Satellite Clinic, which included staff training in all of the specialized areas of care we knew Anthony would need.
Now that this is an official POGO Satellite site, I can’t help but think of “future POGO families” in our area. Perhaps today, the news of the new clinic may not even register, but when they are burdened with their child’s diagnosis, they will have these things to ease their journey:
Closer access to chemo treatments
A “fever card” that is our direct route to the in-patient unit, allowing us to bypass emergency
Coordinated care between PRHC and SickKids that meets the high standard of care that POGO Satellite Clinics deliver
A trusting relationship with qualified staff that go above and beyond for patients in their care
Support from other POGO families that become lifelong friends because of this journey they’ve shared together
Having a POGO Clinic close to us makes life as a parent a whole lot easier. Feeling financially strapped is a common thread among families of children with cancer and satellite clinics give some relief to that. The shorter distance helps us save money on gas for the car, the need to eat out, motel costs, and childcare needed for siblings.
Anthony has already benefitted from shorter clinic visits. This is important because as a teen with cancer, many occasions have been missed because of treatment. Having the accessibility of the POGO Clinic gets him back to his friends who play a very important part in his recovery.
Parents of children with cancer certainly would have never chosen this path for our children, but because this is where we find ourselves, I want to say how grateful we are to POGO and to Peterborough Regional Health Centre for making it possible for families like ours to have an official POGO Satellite Clinic right in our community. We can’t thank you enough for easing the burden by keeping many aspects of our child’s cancer treatment closer to home. Thank you.
POGO-FUNDED RESEARCH: An Economic Evaluation of CAR-T Therapy
Acute lymphoblastic leukemia (ALL) is the most common form of childhood cancer and for most patients, the standard chemotherapy protocol works very well with an overall cure rate of 90%. But, there is a subset of this population that is treatment resistant. For these young patients, a relatively new therapy called chimeric antigen receptor T-cells (CAR-T) therapy may be the answer.
CAR-T therapy uses the patient’s own immune system to do the work of destroying the ALL cancer cells. It starts with harvesting immune cells called T-cells from a patient’s blood. Millions of copies of these cells are grown in a lab—engineered to recognize, target and destroy the cancer cells—then infused into the patient’s bloodstream. Once back in the patient’s body, the cells divide and increase in number, creating a massive army against leukemia cells. Importantly, unlike an infusion of a drug, these cells can remain in the body indefinitely, providing constant surveillance against ALL’s return. The results to date are promising, but not without significant risk.
“Like most cancer therapies, CAR-T cell treatment can have severe and potentially fatal side effects,” says Dr. Alexandra Zorzi, pediatric oncologist at Children’s Hospital, London Health Sciences Centre. “The ‘activation’ of your own immune system can lead to the release of too many cytokines, which can result in laboured breathing, high fevers, and potentially life-threatening decrease of blood flow to internal organs.”
But when it works, it works miracles. At least that is what we know in the short term. “CAR-T cell therapy has the potential to be a major game changer in childhood ALL,” says Dr. Paul Gibson, medical officer with POGO. The early results have shown remarkable response rates, even in children who have been heavily treated for ALL previously. Not only is the response rate impressive, but so are the sustained remissions many patients are experiencing. “This is the first true gene therapy in childhood cancer therapy,” says Dr. Gibson. “While very expensive upfront, it may not only save lives, but save children from needing to be treated many more times in the future.”
Currently, this therapy is only offered at the Children’s Hospital of Philadelphia. The cost to send an Ontario patient for treatment is close to $500,000, not including the cost to families who often have to leave work and home for several months.
Petros Pechlivanoglou, PhD
In 2016, POGO awarded Dr. Petros Pechlivanoglou with a seed grant for his project “Economic Evaluation of CAR-T Therapy for Children with High Risk Relapsed ALL.” Dr. Pechlivanoglou and his co-investigators—Drs. Sumit Gupta, Jason Pole, Paul Nathan, Tal Schechter-Finkelstein and Wendy Ungar, together with PhD student Jill Furzer—are using statistical and mathematical modelling to determine the value of CAR-T therapy from a clinical and economic perspective. What is the trade-off between the treatment’s effectiveness and its cost to the Canadian healthcare system and society overall? Where should we focus our efforts to collect more evidence in the future? And, how will this information be used to inform policy decisions?
“This economic evaluation of CAR-T therapy is only one example of new therapies,” says Dr. Petros Pechlivanoglou. “As new cancer innovations emerge, both in the pediatric and the adult world, we are going to have this challenge of understanding the ‘value-for-money’ proposition again and again. This grant will help us tease out the methods needed to find timely answers to such questions and make prioritization decisions about future clinical, economic and policy research.”
– Petros Pechlivanoglou, PhD
Dr. Petros Pechlivanoglou is a scientist at The Hospital for Sick Children Research Institute and assistant professor at the University of Toronto. His research focuses on methods around the use of health decision analysis, administrative data and prediction modelling in economic evaluation, and the health economics of pediatric oncology and pre-term birth.
The 2016 POGO Symposium on Childhood Cancer –Leukemia: Successes, Advances, Challenges–examined clinical and scientific advances in the diagnosis and treatment of leukemia in children and adolescents and highlighted the impact of this disease on patients, parents and survivors.
Over 300 health professionals representing a variety of disciplines attended the conference, which sold out!
Click on the session titles below to view presentations that POGO has permission to share.
NOTE: The content of each presentation below captures the unedited information and opinions presented by the speakers. Please note that the information contained in the presentations was current at the time it was presented – there may be further information in subsequent literature. Listed speaker credentials were current at the time of presentation.
