As we slide into September, you’ll begin to hear more about childhood cancer.

Why? September is

Childhood Cancer Awareness Month

This is our one designated month to educate others about the world we live in.

The statistics, sad as they may be, and facts about childhood cancer therapies, research, types and more.

Although many can scroll past and close their eyes to the reality of childhood cancer, this is our daily life.

We can’t turn away. We can’t ignore it. This is the life we’re engulfed in.

Thank you for joining us on Avery’s journey.

Let’s talk about some childhood cancer facts.

This quote is from President Biden’s Proclamation on National Childhood Cancer Awareness Month, 2021:

Cancer remains the second leading cause of death in the United States — and the leading cause of death by disease for American children between infancy and age 15. 

Though improvement has been made in some areas, survival rates for all childhood cancers remain too low. A growing number of childhood cancer survivors are experiencing longer life expectancies, but far too many continue to face significant long-term physical, emotional, and cognitive effects due to their cancer and treatment.

The White House Washington DC, United States

Joseph R. Biden Jr

President

One quarter of survivors face a late-effect from treatment that is classified as severe or life-threatening.

In a young person, cancer is less likely to be caused by the patient’s environment or lifestyle. Instead, cancer-causing genetic changes (called mutations) are most commonly thought to occur by chance.

However, in about 8% of cases children are born with genetic changes that increase their risk of getting cancer.

Treatment depends on the type of cancer. Treatments can include surgery, chemotherapy, radiation therapy or sometimes immunotherapy. Sometimes a patient receives more than one of these treatments.

The length of time needed for treatment differs depending on the type of cancer. In general, treatments take several months or even years.

Researchers and doctors are working on new therapies for children with cancer. Some of these treatments, called precision medicine, target specific genetic changes in the cancer.

Let’s talk about some childhood cancer stats.

Each year in the U.S., an estimated 15,780 children aged 0-19 are diagnosed with cancer.

1 in 285

Approximately 1 in 285 children in the U.S. will be diagnosed with cancer before their 20th birthday.

Globally there are more than 400,000 children diagnosed with cancer each year.

20% of children with cancer in the U.S. will not survive it.

Every 3 minutes a family hears the devastating words that their child has been diagnosed with cancer.

only 3 states

Approximately 40,000 children are on active treatment in the U.S. at any given time.

More than 95% of childhood cancer survivors have significant treatment-related health issues:

  • Secondary cancers
  • Heart damage
  • Lung damage
  • Chronic hepatitis
  • Alterations in growth and development
  • Impaired cognitive abilities and psycho-social impact

One quarter of survivors face a late-effect from treatment that is classified as severe or life-threatening.

Globally, 44% of children with cancer will die before they can be diagnosed.

Only 3 state legislatures have taken direct action towards funding research and support.

29 states have no mention of childhood cancer in their state

❝No matter what the statistics say, there is always a way.❞ — Bernie Siegel

Avery is ONE of 285 children in the U.S. that is diagnosed with cancer before their 20th birthday.

She is ONE of an estimated 15,780 children aged 0-19 are diagnosed with cancer in the U.S.

She is ONE of over 40,000 children currently on active treatment in the U.S.

We’re one of the ‘lucky’ ones that was diagnosed. Globally, 44% of children with cancer will die BEFORE they can be diagnosed.

Only 3 state legislatures have taken direct action towards funding research and support.

Yet, on average, only 3.97% of research funding is spent on childhood cancer research.

Avery is #morethan4

Our children are all MORE THAN 4!

TAKE ACTION:

Ask Congress to Fully Fund the Childhood Cancer STAR Act.

The STAR Act was signed into law in June 2018 and is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors.
You can easily compose your letter here.

Accelerating Kids’ Access to Care Act.

This bipartisan legislation aims to improve access to care for children with cancer that are enrolled in Medicaid.

The Accelerating Kids’ Access to Care Act recognizes that children may need to receive care from providers outside of their home state and simplifies the Medicaid out-of-state provider enrollment process. This legislation builds on the Advancing Care for Exceptional Kids Act that was signed into law in 2019.

Research Investment to Spark the Economy (RISE) Act.

The bipartisan RISE Act would provide $25 billion (including $10 billion to the NIH) to support independent research institutions, public laboratories, and universities throughout the country as well as provide needed regulatory flexibility so they can continue work that was disrupted by the COVID pandemic.

The pandemic caused severe disruptions to federally-backed research, including childhood cancer research.

Many laboratories were forced to minimize operations beyond “essential” work, delay research already underway, and postpone planned projects. Supplemental funding is needed to offset these added expenses.

Support pediatric disease research through Kids First 2.0

Use this alert to ask your legislators to support the Gabriella Miller Kids First Research Act 2.0, which redirects penalties levied against law-breaking pharmaceutical manufacturers towards the Kids First Pediatric Research Program at the NIH. Kids First was established in 2014 and funds much-needed research on rare childhood cancers, birth defects, and other rare pediatric diseases.

Support the National Cancer Institute

Join us in emphasizing to Congress the importance of supporting an appropriations bill with strong funding for the National Institutes of Health, the National Cancer Institute, and childhood cancer research.

The appropriations recommendations for fiscal year 2022, as stated in this letter, come from two leading advocacy coalitions that we are members of – the Alliance for Childhood Cancer and One Voice Against Cancer (OVAC) – and represent the consensus of the broader medical research community.

Cancer remains the number one disease killer of children, and some pediatric cancers remain terminal upon diagnosis. Thousands of children will be diagnosed this year and progress in research is almost entirely dependent on federal funding.

Childhood cancer doctors and researchers around the country are dependent on that funding to advance new treatments and give us hope.

National DIPG Awareness Resolution

This resolution designates May 17 as National DIPG Awareness Day, to raise the profile of this devastatingly terminal childhood brain tumor. DIPG is the second most common type of brain cancer in children and responsible for the majority of pediatric brain tumor deaths each year.

This resolution is an important first step in securing the support, attention, and resources needed to develop better treatment options and find a cure.

365 Days of Gratitude

Similar Posts