Childhood Cancer Research is consistently and severely underfunded.  While there is a lot of information listed here, I hope you read through all of it, as it does contain vital information for us to become educated and continue to spread awareness for our children.

FAST CHILDHOOD CANCER FACTS

• Childhood cancer is the #1 cause of death by disease in children in the US
• The average age of a child diagnosed with cancer is 8
• 1 in 285 children will be diagnosed with cancer by the time they are 19
• 42 children per day, or 15,780 children annually, are expected to be diagnosed with cancer
• 1 out of 6 children diagnosed with cancer do not survive 5 years
• Despite advances in medicine, some types of cancer still remain incurable
• Globally, a child is diagnosed with cancer every 80 seconds
• Despite multiple methods for early detection of cancer for adults, early diagnosis remains difficult with childhood cancers
• While many adult cancers can be the result of unhealthy life choices, childhood cancers occur regularly and are random
• In the US, cancer among adolescents is increasing at a greater rate than any other age group, except those over 65 years
• There are over 100 types of childhood cancers with countless subtypes

In 2022, adults 19 and older made up 78% of the population.  The 5-year relative survival rate for non-metastatic invasive breast cancer in stages 0 and I is 100%; 93% for stage II; and 72% for stage III (Cancer.Net Breast Cancer Statistics).   Breast cancer is the 6^th most common cause of death by disease of women in the US, behind heart disease, stroke, lung cancer, respiratory disease, and Alzheimer’s.  For prostate cancer, the 5-year relative survival rate is 97% for stages I and II; and 80-85% for stage III (Cancer.Net Prostate Cancer Statistics).  The US population of children under the age of 18 totaled 22%, and 1 in 6 children will not live beyond 5 years. 

***FINANCIAL IMPACTS OF CHILDHOOD CANCER TREATMENT ON FAMILIES***

• The average cost of ONE hospital stay for a child fighting cancer, is $40,000
• The average cost of ONE hospital stay for an adult fighting cancer, is $22,100
• 83.5% of families with a child with cancer, will experience some level of financial hardship
• 11.9% of families with a child with cancer, will spend more than $10,000 annually to care for their child (keeping in mind, most treatments last multiple years)
• 75.7% of families with a child with cancer, will have at least one parent who needs to cut back on work, or stop working altogether
• 67.3% of families with a child with cancer have health insurance through the parent’s employer.  This is either cancelled or changed drastically if that parent is forced to quit their job.
• 15% of families will fall from ABOVE TO BELOW the poverty line due to treatment-related financial burden.  Data suggests the financial burden lasts well beyond the end of treatment, or death.

***FUNDING***

For fiscal year 2024, the NCI (National Cancer Institute) has a $6.72 billion budget to be allocated across all cancers.  Most childhood cancer cases are stored within the hospital where the child is seeking treatment.  This makes it difficult to share, store and analyze data across the US.  The NCI has recently allocated $50 million for the Childhood Cancer Data and Initiative (CCDI) Program, which will gather data from every child diagnosed with cancer, regardless of where they receive care and develop a platform to bring together clinical care and research data.  While this is a great and a much-needed initiative, the NCI still only allocates $28 million to actual cancer research annually; only 4.2% of the entire budget and almost half of the funds allocated to the CCDI.  Prostate cancer alone receives at least 5% of the annual budget. 

To further put this into perspective, the NCI allocated $572.4 million to breast cancer research in 2007.  Other NIH (National Institutes of Health, which runs the NCI) Institutes funded breast cancer research at a level of $132.6 million for the same year.  Additionally, the Department of Defense, which also supports breast cancer research, allocated an additional $138 million.  With an overall 5-year survival rate close to 90%, breast cancer research alone received $843 million in Federal funding.  On top of this, funds are raised annually by breast cancer organizations.  It is estimated that the success of these organizations raises approximately $256 million in combined assets.  This brings the total funding close to over $1 billion.  And, bear in mind, these figures are from 2007, and funding has increased in the years between.

Again, only $28 million is allocated to childhood cancer research for ALL 100+ types of cancers.

***TREATMENT OPTIONS***

Frontline (first-line, or standard) chemotherapies for childhood cancers are often adult chemotherapies.  Below is a list of FDA approved adult chemotherapies used today in pediatric treatments, and the years they were approved:

     - Methotrexate:  1953              - Vincristine:  1963

     - Mercaptopurine:  1953          - Cytarabine:  1969

     - Doxorubicin:  1984                - Asparagin:  1988

Since the 1980s, only 4 new drugs have been FDA approved for use SPECIFICALLY in pediatric cancer treatments.  Because almost all chemotherapies used for children are actually created for ADULTS, more than 95% of childhood cancer survivors will have severe to life-threatening late-effect health issues by the time they are 45.  While some of the health conditions can be caused by the initial cancer, most health-related issues are side-effects from the result of the treatments they receive. These can include: hearing and/or visual loss, growth deficits, cognitive impairments, lung damage, heart damage, infertility, secondary cancers, and death

Most relapsed childhood cancers are treated as trials, because there are no standard protocols for many relapsed caners.  Here is a story of Archer, who was diagnosed with recurrent, stage IIII high-risk neuroblastoma (a cancer often found in the adrenal glands, above the kidneys, and can develop in the belly, chest, neck, pelvis and bones), just before he turned 2.  After initial treatment which failed, Archer was placed into a clinical trial.  One of the chemotherapy drugs given to him, Thiotepa, was originally developed in the 1950s for adults.  It is related to Nitrogen Mustard.  Yes, the stuff used in chemical warfare!  One of the major concerns with this drug is it is excreted through the skin and, if left there will cause severe chemical burns.  To combat this, Archer must take baths every 8 hours, including overnight baths.  After each bath his clothes must be changed, and sheets are changed each time an overnight bath is completed.  Additionally, his diaper must be changed every hour to prevent chemical burns.  Each time he is bathed, clothes changed, and diapers changed, the nurses (in hospital) and his parents (while at home) must don full PPE gear each time.  Archer just turned 3, is still considered high-risk and is still undergoing treatment.

50% of children with relapsed cancers participate in clinical trials.  Compared, only 5% of adult patients opt into clinical trials, despite receiving 96% of the annual NCI budget.  Clinical trials for patients with recurrent disease often require specific equipment or expertise and are limited to fewer institutions.  This requires additional (often) cross-country travel, lodging, meals and extended stays away from home where one parent and siblings may be left behind.  Adults can use as a last resort what our children are required to use as a second chance at life.

When thinking about treatment for childhood cancer, St. Jude is a prominent figure that comes to mind.  While St. Jude is an amazing organization who foots the entire bill of cancer treatments for their pediatric patients, which often exceeds $1 million, there are strict criteria for becoming a patient of St. Jude.  While fabulous, you might say St. Jude is “exclusive”.

***DID YOU KNOW***

The annual NCI budget allocation to Childhood Cancer research has been 3.8% for years.  This increased to 4.2% in 2023.  A less than 1% increase.  An argument that the NCI has made as to why only 4.2% of the annual cancer research budget is allocated to pediatric cancer specifically is that “adult cancer research and treatments helps all cancers in general”.  But what about cancers only found in children?  Children are not simply small adults.  They have different anatomy, they are still growing and developing.  Shouldn’t they be treated differently?

***DID YOU KNOW***

Did you know that Neil Armstrong had a daughter named Karen “Muffie” Armstrong who was born on April 12, 1959.  Almost exactly 10 years before Neil walked on the moon.  Just after Muffie’s 2^nd birthday, she fell while on the playground.  She experienced a bloody nose and difficulty controlling her eye movements.  She was subsequently diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma, a glioma of the pons).  Muffie did receive some treatment however passed away on January 28, 1962.  At the time Muffie was diagnosed, the survival rate for DIPG was 0%.  Today, the 5-year survival rate for DIPG remains at less than 1%.  Muffie died before Neil Armstrong walked on the moon.  We have failed to make medical progress in creating more pediatric chemotherapy options, but we have succeeded on putting men on the moon over 50 years ago. And we are working to put men on Mars.  Think about that.

***DID YOU KNOW***

• Americans spend more on potato chips ($70 million) annually than the Federal Government allocates for childhood cancer research – $28 million
• Starbucks makes more in 3 days, than the NCI allocates to pediatric cancer research annually.

***DID YOU KNOW***

The US Federal Spending Priorities for fiscal year 2021 shows that approximately $23 billion is spent on NASA; approximately $15 billion is spent on Space Force; almost $1 billion is allocated to breast cancer research; approximately $800 million for leukemia research; and $600 million for lung cancer research.  For childhood cancer research, only $28 million is provided. 

***DID YOU KNOW***

• The average age at diagnosis for an adult with cancer is 61 years.  Based on this, there is an estimated “years of life lost” of 16. 
• The average age at diagnosis for a child with cancer is 8, resulting in an estimated “years of life lost” of 69, when a child dies from cancer.

***DID YOU KNOW***

Good news!  The NIH has invested over $2 million to see if spending time in a hot tub 3 times a week, for 10 weeks, relieves stress.  Meanwhile, children are hosting bake sales and lemonade stands to fund their treatment.

With all this information, we should be asking the following questions:  Why is the federal government spending such an exorbitant amount on NASA and hot tub studies, instead of increasing the amount of funding to childhood cancer research?  We have placed men on the moon, and we are working to place men on Mars. When did this become a priority over savings children? Why are we allowing our children to suffer because there are “technically chemotherapies they can use” – adult chemotherapies?  Why are we settling?  Why are we focused on spending so much money on food and drink?  A lot of this can be explained simply.  EDUCATION.  AWARENESS.  Everyone recognizes breast cancer.  October is breast cancer awareness month.  The entire month – and beyond – stores are filled with pink ribbons and tchotchkes dedicated to awareness.  The very following month, September, is childhood cancer awareness month.  Are you aware of this?  Do you ever notice the gold ribbon?  Do sales associates ask if you want to donate to childhood cancer organizations?  While the pink ribbons continue well beyond the month of October, any gold ribbons or mentions of Childhood Cancer Awareness, almost vanish.  We need to educate ourselves about pediatric cancer.  And in doing so, we can spread awareness to others who are in the dark.  Most families fighting childhood cancer say, “I didn’t even know or think about childhood cancer, until it was my child”.  This needs to change.  We need to change our priorities and stop allowing our children to suffer in such extreme ways that cause so much destruction throughout the remainder of their life, if they survive.  We need to fight for those that cannot fight for themselves.  We need our children.

I want to note that all cancer research matters.  I’ve focused a lot on breast cancer here, because it is by far the singular most funded cancer research.  While it too matters greatly, it is the perfect example to show the disparity regarding the amount of funding allocated for our children.

I recommend the following organizations which are great to visit, learn facts, get involved, and financially contribute to.  Just remember, that cup of Starbucks, or that bag of potato chips could be donated to a childhood cancer organization…

• St. Baldricks:   www.stbaldricks.org
• Alex’s Lemonade Stand:  www.alexslemonade.org
• American Childhood Cancer Organization:  www.acco.org
• Cure Childhood Cancer:  www.curechildhoodcancer.org
• St. Jude:  www.stjude.org

Thank you for joining my fight for Childhood Cancer!