The fight against childhood cancer is a complex challenge requiring a united and strategic approach. While numerous passionate organizations are dedicated to this cause, a fragmented landscape can hinder progress. As we mentioned in our October blog, researchers, clinicians, patient advocates, and technology companies are already banding together to pool their knowledge and expertise to reimagine how pediatric disease research is conducted. This same collaborative spirit driving the sea change in research can also work when it comes to philanthropy and philanthropic groups you support.

To achieve a future where childhood cancer is no longer a life-threatening disease, we must:

• Support Innovative Research: Fund groundbreaking research projects that have the potential to revolutionize real-time, real-world treatment.
• Advocate for Policy Change: Work together to influence healthcare policies that prioritize pediatric cancer research.
• Foundational Collaboration: Partner with other foundations working toward the same goal to amplify impact on pediatric cancer research.

One possible path forward is by pooling resources and effort. In cooperation with other organizations, Bridge To A Cure Foundation can significantly enhance its impact and accelerate the pace of discovery.

The Missing Pieces

One of the biggest challenges in the pediatric cancer research field is the lack of coordination among non-profit organizations. This fragmentation can lead to inefficiencies:

• Redundancy in fundraising efforts: Competing for limited resources can dilute the impact of individual organizations.
• Duplication of research: Overlapping research projects can slow overall progress.
• Operational inefficiencies: Smaller organizations may struggle with administrative burdens, diverting funds from research.

A Call for Collaboration

Inspired by the collaborative spirit of the scientific community, we believe that philanthropic organizations can achieve an even more significant impact. As the pediatric cancer research landscape evolves, there is a growing need for philanthropic organizations to work together more closely. These organizations can significantly impact the field by aligning their efforts and pooling resources. One key challenge is to ensure that funding is directed towards the most promising research projects and that there is minimal duplication of effort.

A Shared Vision for the Future

A unified approach to philanthropy can help to accelerate progress towards a cure for childhood cancer.

By supporting common goals and priorities, philanthropic organizations can maximize their impact and ensure their contributions are used effectively.

Finally, one novel solution may be to convince these large research institutions with substantial excess reserves to establish a dedicated $100 million pediatric brain tumor fund. This fund could enable scientists to focus on innovative therapies and prevention strategies, bypassing bureaucratic hurdles and traditional research models. This bold idea has the potential to significantly improve outcomes for children battling brain tumors, offering hope where it was once scarce.

We enthusiastically invite philanthropic organizations to join us to accelerate scientific discovery, influence healthcare policies, and uplift families during their most challenging times. We now know that the pediatric cancer researcher community can do it successfully. Together, nonprofits and philanthropists can advance a future where childhood cancer is no longer a mortal threat, but a treatable disease.

Congress is slated to renew a bipartisan bill that extends vital funding for America’s only pediatric cancer research database of its kind — but it’s been needlessly put at risk.

Last year, Bridge To A Cure Foundation announced our emphatic support of renewal of the Gabriella Miller Kids First Research Act. The original bill, which passed in 2014, revolutionized pediatric research and cleared the way for unprecedented progress in childhood cancer and structural birth defect disease spaces by:

• Generating one of the largest inventories of molecular and clinical datasets for childhood cancer and structural birth defects research. To date, more than 93,000 samples have been used to generate DNA and RNA data that is paired with imaging and clinical data, all made available to freely empower collaborative research through a centralized, cloud-based data portal.
• Receiving wide support from patients and families. The National Institutes of Health (NIH) Kids First Data Resource Center, administered by the Children’s Brain Tumor Network (CBTN), created the infrastructure to house data sets from more than 30,000 participants across the pediatric cancer and structural birth defects landscape.
  
• Accelerating breakthroughs. Kids First Data Resource Center has advanced more than 500 pediatric cancer and structural birth defect research projects and freely provided access to more than 3,200 users.

Bridge To A Cure Foundation understands from direct experience the barriers scientists and researchers face in accessing enough data to make meaningful progress. After all, Bridge To A Cure has helped the Kids First Data Resource Center build-out through roles on both the CBTN Executive Council and its Executive Board, as well as through grant funding. Kids First does nothing less than ensure that children are no longer left behind when it comes to medical advancement. And now, assets are fully in place and being accessed by thousands of users — an explosion of scientific discovery is at the ready! However, the decade-long commitment to put kids first ends soon. 

Funding for the NIH Kids First Data Resource Center will expire if Congress does not act by end of year to pass The Gabriella Miller Kids First Pediatric Research Act renewal. 

The Kids First Data Resource Center has been a key component in the creation of a national childhood cancer database—which is at the top of the list in the Bridge To A Cure Foundation Action Plan to reduce deaths due to childhood cancer 50% by 2030. Long-time ally CBTN has been identified by the National Institute of Health (NIH) as the model for open science in data-driven discovery. The impacts of Congressional failure to this bill will be devastating for researchers and scientists, kids and families around the world:

• $126 million already invested in this successful, one-of-a-kind resource will be wasted. 
• The Kids First Data Resource Center will be discarded. 
• Critical funding needed to fulfill Kids First’s life-saving mission will be cut off. 
• The opportunity to again create an initiative like this one is unlikely. 
• While much of the data can be transferred to a different data platform, access and types of use of the data become much more limited. 
• Researchers would once again be forced to analyze adult data to study and treat kids’ diseases blindly. 
• Potential for effective personalized medicine that can save lives becomes greatly diminished. 

Earlier this year, Bridge To A Cure Foundation celebrated when the House of Representatives passed the Gabriella Miller Kids First Pediatric Research Act renewal, designating $125 million to creating a truly comprehensive, open-access, shared-data resource that will benefit the entire childhood cancer and rare diseases research community.

But, the Senate must approve the bill by the end of this year or all of the progress toward better treatments and cures will be lost.

Since this open-access, data-driven model is what the NIH calls the standard, it’s hard to fathom that inaction by just one Senator can dismantle ten years of work by an entire research community focused on cures for America’s #1 killer of kids by disease. But that is what’s happening now. Bridge To A Cure and its coalition met with dozens of Congressional members, and more than 50 have recognized the importance of funding this bipartisan bill through co-sponsorship.

But that isn’t enough to save Kids First. If Senate leaders choose to not include this bill in its end-of-year appropriation package, Congress won’t get the chance to renew the Gabriella Miller Kids First Pediatric Research Act. These few key Senators — Schumer (D-NY), McConnell (R-KY), Murray (D-WA), and Burr (R-SC) — have the power to move the bill forward. They must ensure it does. After all, the lives of hundreds of thousands of sick kids and their families hang in the balance. 

Implications of Failure

The significance of the need for reauthorization of the Gabriella Miller Kids First Pediatric Research Act cannot be overstated. Since the pace of data generation and analysis moves so quickly today, a lapse in even just a couple years means the biggest halt to progress ever experienced in the childhood cancer research community. In addition, data left unused becomes increasingly less usable. Millions of dollars will have been invested for nothing. Leaders in collaborative research models like the CBTN will lose the capacity for collaborative research and precision medicine. Most tragic of all, children will suffer and die needlessly.

Join the Twitter Campaign to Put Kids First

Bridge To A Cure Foundation, along with dozens of other childhood cancer advocate groups, are pushing for the Gabriella Miller Kids First Pediatric Research Act to be included in the Senate’s end-of-year appropriations package. We ask for your help and support, now more than ever, to join our efforts in getting through to key Senators. 

It’s time to put Kids First—again.

Below you’ll find a 5-day posting plan to insist that our elected officials include the S. 1521 Kids First Pediatric Research Act in their end-of-year funding package. We’ve outlined two different ways you can use Twitter to reach Senate leadership:

 OPTION 1: VIDEO MESSAGE
Record a video message to share along with your tweets.

• Record your video message using a smart phone or computer camera. Call on Congress to include the Gabriella Miller Kids First Pediatric Research Act act in their end-of-year package. 
• Place the video link as noted in each tweet below as indicated.
• Copy the entire tweet into your Twitter account. 
• Send.one tweet each day for 5 days.

DAY 1

.@SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr Please put S.1521 Kids First Research Act 2.0 in your end of year package & put #KidsFirst in #ChildhoodCancer & #RareDisease Research and Data Collection. @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE.

DAY 2

Please @SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr put S.1521 Kids First Research Act 2.0 in your end of year package & put #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection. @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE

DAY 3

Please put S. 1521 The KIDS FIRST RESEARCH ACT 2.0 in your end of year package @SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr Lets place #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection. @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE

DAY 4

Let’s place #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection. Please put S. 1521 The KIDS FIRST RESEARCH ACT 2.0 in your end of year package @SenSchumer @PattyMurray @LeaderMcConnell @SenatorBurr @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE

DAY 5

#ChildhoodCancer kids are always last in line for new drugs and therapies. Make #KidsFirst by passing S. 1521 Kids First Research Act 2.0. Put it in your end of year package. @SenSchumer @PattyMurray @LeaderMcConnell @SenatorBurr @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE

OPTION 2: CHILD’S IMAGE
Share an image of a beloved child that has experienced childhood cancer or structural birth defect.

1. Upload a child’s image as noted in the tweet below
2. Select the version of copy appropriate for your situation. Copy the entire tweet into your twitter program and send.
3. Send one each day for 5 days.

DAY 1

My child (or use first name) didn’t (get sick or die) in vain. @SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr Please put S.1521 Kids First Research Act 2.0 in your end of year package & put #KidsFirst in #ChildhoodCancer & #RareDisease Research and Data Collection. @smashingwalnuts

DELETE THIS AND PLACE CHILD’S IMAGE LINK HERE

DAY 2

Please @SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr put S.1521 Kids First Research Act 2.0 in your end of year package & put #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection. My child (or use first name) didn’t (get sick or die) in vain. @smashingwalnuts

DELETE THIS AND PLACE CHILD’S IMAGE LINK HERE

DAY 3

Please put S. 1521 The KIDS FIRST RESEARCH ACT 2.0 in your end of year package @SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr Place #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection in (honor or memory) of my child (or use first name). @smashingwalnuts

DELETE THIS AND PLACE CHILD’S IMAGE LINK HERE

DAY 4

Let’s place #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection. Please put S. 1521 The KIDS FIRST RESEARCH ACT 2.0 in your end of year package @SenSchumer @PattyMurray @LeaderMcConnell @SenatorBurr @smashingwalnuts

DELETE THIS AND PLACE CHILD’S IMAGE LINK HERE

DAY 5

#ChildhoodCancer kids are always last in line for new drugs and therapies. Put #KidsFirst by passing S. 1521 Kids First Research Act 2.0 in your end of year package. Remember (or honor) my child (or use first name). @SenSchumer @PattyMurray @LeaderMcConnell @SenatorBurr @smashingwalnuts 

DELETE THIS AND PLACE CHILD’S IMAGE LINK HERE

Through cooperation, Bridge To A Cure aims to cut the childhood cancer death rate 50% by 2030.

When Bridge To A Cure founder Bob Martin’s granddaughter Clara was diagnosed with brain cancer, Martin and dozens of healthcare professionals worked tirelessly to find effective treatments in an effort to save Clara. But, sadly, Clara passed on October 8, 2017 at just six years old. Inspired by her courage and positive spirit, Bridge To A Cure Foundation was established to find cures for pediatric brain tumors so that other children with cancer didn’t have to suffer the way she did. Because, for thousands of families like Bob’s who are facing a childhood brain tumor diagnosis, the journey is horrific and the results can be devastating.

Our Mission

To unite and transform the childhood cancer community’s approach to research with the goal of cutting the childhood cancer death rate by 50% by 2030.

Bridge To A Cure has been able to advance this mission by focusing on these key strategic initiatives:

• Focus on Brain Tumors. If brain tumors are cured, childhood cancer deaths are reduced by more than 50%.
• Data Collection, Processing, and Dissemination. By providing researchers access to a large enough database, we can accelerate breakthroughs and improve individualized treatment plans.
• Build Influence. As the foundation’s network of allies grows, so too does collaboration. This drives additional funding and federal legislation support.

The Bridge To A Cure Foundation 2021 annual report covers this progress in more detail. These initiatives have been implemented so successfully through the foundation’s staff, directors, and advisors, its network of allies, and individual supporters. But, there is much more that needs to be done. It’s time to move to the next phase of the Bridge To A Cure action plan—tapping into the foundation’s closely aligned network to strengthen databases and optimize resources, while also continuing to build collaborative efforts nationwide and beyond.

Introducing Children’s Brain Tumor Network… again!

And, the timing couldn’t be better. September is designated to drive Childhood Cancer Awareness, and earlier this month, Bridge To A Cure Foundation announced a new, collaborative effort with Children’s Brain Tumor Network (CBTN). Moving forward, Bridge To A Cure will be integrating our time and talent into supporting this long-standing ally.

CBTN has been identified by the National Institute of Health (NIH) as the model for open science in data-driven discovery and Bridge To A Cure leaders fully believe that the cures for childhood brain tumors will be found using this collaborative data.

As CBTN begins delivering on Project Accelerate (the largest childhood brain tumor data release ever), this partnership makes sense now more than ever. The scope of this new data cannot be understated. With more than 8,000 new brain tumor samples being made available freely to scientists and researchers, the time for accelerated discovery is now. To this end, we have established the Bridge To A Cure-CBTN fund in memory of Clara. We will work hard to empower the work of CBTN and the more than 30 member research institutions globally that participate in their network.

Moving forward, Bridge To A Cure will continue its role on the CBTN Executive Council. And now, foundation president Robert Martin will sit on CBTN’s Executive Board to advise and formulate strategies that will continue to advance cures for children with brain tumors.

Continuing to Build Influence with St. Baldrick’s Foundation

St. Baldrick’s Foundation has been funding many CBTN member institution projects and is America’s largest private donor of childhood cancer research. Bridge To A Cure’s Martin is a member of their Board of Directors, where he continues to advocate for the funding of open science and data sharing in the pediatric cancer research realm. 

This partnership has led Bridge To A Cure Foundation to be in the position to:

• Amplify demand for legislative prioritization of childhood cancer cures
• Influence lawmakers to craft and support stronger bills that actually lead to meaningful progress

How You Can Help The Bridge To A Cure Coalition

You are invited to share in this celebration of progress with Bridge To A Cure Foundation. Please do continue with words of encouragement, resource sharing, and generous giving—which drives our work forward, as it has since 2017. One day, together, we will share in the victory that childhood brain tumors no longer are a devastating threat to children and their families.

And if you can help, please donate to help the Bridge To A Cure Foundation coalition here.

Often our fiercest advocates, there are several ways that these brave change-makers advance progress.

Bridge To A Cure Foundation was established to find cures for childhood cancer after the devastating loss of founder Bob Martin’s granddaughter Clara to a brain tumor in 2017. It was the Martin family’s hope that other children with cancer wouldn’t have to suffer the way she did. Thousands of families like Bob’s are facing a horrific journey after a childhood brain tumor diagnosis. Fueled by their pain and anger, patient families sometimes become some of the fiercest advocates for childhood cancer research.

There’s a common thread that bridges us all together to save lives.

Family-run foundations are at the heart of finding cures to childhood brain cancer. Each foundation shows up in different ways. Through different initiatives, powerful partnerships can grow. Because, although we might have different mission statements, we all agree on one thing: no child or family should suffer from this devastating disease ever again.

Foundations make a huge impact when it comes to childhood cancer research. Impacts such as:

Creating legacies. Behind every piece of data collected is a child. This is something that Swifty Foundation understands to their core. After their son Michael was diagnosed with a rare form of brain cancer, he developed his Master Plan to find cures — a plan that his family continues to pursue today. By nurturing relationships, hammering out logistics, and developing workflows, Gift from a Child was born. This program includes six Centers of Excellence who have been a part of developing pre-clinical models of the disease. The gifts of tumor tissue is processed at Bridge To A Cure Foundation collaborator Children’s Brain Tumor Network (CBTN). These gifts of tumor tissue allow these precious children to leave a legacy and enable a bit of peace during what is a difficult time for those facing a dangerous diagnosis.

Legislative action. Through the Gabriella Miller Kids First Research Act, over $88 million has been raised for childhood research. This Act was bound to do big things since it was named for an amazing childhood cancer patient and advocate, Gabriella Miller. This momentous initiative is the legacy that Gabriella’s parents built after her heartbreaking passing at age 11. Now, we’ve teamed up with Gabriella’s mother, Ellyn Miller, to fight for the passing of Gabriella Miller Kids First Research Act 2.0, a bill that generates new funds for childhood cancer research—a bill that doesn’t cost taxpayers a penny and will never sunset. Instead, fines from companies that break the law would be channeled directly to critical medical research. You can learn about how Bridge To A Cure is supporting the amazing Kids First 2.0 initiative here.

Enlisting scientific collaborators to accelerate breakthroughs. With a 37-state reach and a self-described “loud voice,” Kim MacNeill of the Ross K MacNeill Foundation has been a force for collaboration and open-access when it comes to medical research, particularly for pediatric brain cancer. After the tragic loss of her son Ross to a form of brain cancer, Kim was set on doing absolutely everything in her power to make sure future children and parents didn’t have to go through what They went through. The Ross K MacNeill Foundation research investments focus on those who prioritize a patient-first approach. They have supported CBTN and their open-access model and been a part of amazing new research initiative such as a phase 1 vaccine trial that will help the body’s immune system to fight against tumor growth or occurrence. On top of this, Kim advocates to other researchers and stakeholders to “buy-in” to the CBTN model, so that other breakthrough projects can happen.

Pushing big data for bigger discoveries. In partnership with CBTN, Amanda Haddock and her team at Dragon Master Foundation work to develop and expand CAVATICA; a free, open access research platform that enables doctors and scientists to easily share, search, and analyze large collections of patient data. The Haddock family discovered that many researchers they consulted during their teen son David’s brain tumor journey could not access enough information necessary to provide the best treatment options. Sadly, David passed away after a 20-month fight, but it was his wish that other kids be spared the devastation of this disease. Like Bridge To A Cure Foundation, they’ve been at the forefront of driving data sharing and research collaboration.

Bridge To A Cure is honored to partner with such amazing foundations and families. Like us, they know loss, heartache, and what it means to want to fight back against pediatric brain tumors. Like them, Bridge To A Cure disrupts the status quo as we build bridges that can restore hope to hundreds of thousands of families devastated by childhood cancer.

Coming Together To Find Cures

Foundation president Robert Martin sits on the CBTN Executive Board to help direct its vision and priorities. In addition, Bridge To A Cure Foundation actively participates in the CBTN Executive Council—and now integrates a new, collaborative effort of dedicating our time and talent to supporting the amazing work being done by the Network. These aligned family foundations, which are often the fiercest advocates in children’s brain cancer research, also sit on the organization’s executive council. Together, the CBTN executive council has raised millions of dollars for research. We make vital connections, pave the way for legislative change, push technological innovation in healthcare, and contribute to the most impactful breakthroughs towards cures for childhood brain cancer in over 40 years. This is just the beginning.

Even though childhood brain cancer is the most deadly form of cancer in children, it is one of the least funded in cancer research, period. Through meaningful partnerships between the Children’s Brain Tumor Network, Bridge To A Cure Foundation, and other amazing foundations like the four mentioned here, big things are happening.

Let us never forget what was lost—and show gratitude for the efforts of these initiatives so that, in the near future, children no longer have to suffer. Through the collaborative efforts of CBTN and dedicated family-led foundations, we will cut the childhood cancer death rate 50% by 2030.

To this end, we’ve created a new Bridge To A Cure-CBTN Fun. Donate to help the Bridge To A Cure Foundation coalition here.

Congress is considering a bipartisan bill to extend and increase funding for childhood cancer research – without the need for taxpayer investment.

It’s not every day we get the chance to support bipartisan legislation to speed up research for cures to childhood cancer. So we at Bridge To A Cure are excited to support the Gabriella Miller Kids First Research Act 2.0.

In 2014, Congress passed the original Gabriella Miller Kids First Pediatric Research Act to fund a 10-year program to advance research into rare childhood diseases. The legislation has provided $88 million of non-taxpayer funding to the National Institutes of Health over seven years.

With this funding, NIH established the very successful Gabriella Miller Kids First Pediatric Research Program (Kids First), which has funded many important studies into the genetic basis of childhood cancers and structural birth defects. The legislation is expected to provide another $38 million before it expires.

With the current law set to sunset before long, we need to extend and expand it to keep dollars, data and momentum flowing in the fight against childhood cancer. The Gabriella Miller Kids First 2.0 legislation will do that (learn more and sign a petition to Congress in support of it here.)

The bill would greatly increase funding for childhood cancer research through the NIH without using any taxpayer dollars. It would do this by channeling the funds paid by companies that break the law directly into critical medical research.

As Congress continues partisan battles on many fronts, the Gabriella Miller Kids First 2.0 enjoys wide bipartisan support with more than 40 representatives and seven senators cosponsoring it. More than 250 foundations and organizations —including Bridge To A Cure Foundation — plus more than 1,200 advocates in all 50 states have signed a letter of support for the new legislation.

The bill’s chief advocate is Ellyn Miller, Gabriella’s mom. At age 9, Gabriella was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable brain tumor deemed terminal upon diagnosis. Gabriella quickly became a global advocate for children with cancer.

Less than a year after her diagnosis, Gabriella passed away. An interview filmed two weeks before her death led to her name being added to the first act allocating $126 million for childhood disease research.

Now the Gabriella Miller Kids First Act 2.0 legislation is working its way through Congress, and Bridge To A Cure is joining other partners in urging the public to support it. The new legislation strongly supports the third pillar of our action plan, to implement a new approach to childhood cancer research funding and increase funding allocated for research.

This is critical when we consider that cancer remains the single leading cause of death by disease among American children, yet currently only 4% of the National Cancer Institute’s $4.9 billion budget goes towards development of cures and treatments for childhood cancer. Because of limited research in the past 30 years, only four drugs have been developed exclusively to treat childhood cancer.

The new legislation is a also an important key to creating a national childhood cancer database, number one on Bridge To A Cure’s action plan. Funding from the legislation will help to develop a truly comprehensive shared-data resource for scientists researching the majority of pediatric cancers and structural birth defects; it will also support development of computational tools to analyze these very large, complex genomic and clinical data sets.

The Gabriella Miller Kids First Research Act 2.0 (HR 623) was introduced on Jan. 28 of this year by representatives Jennifer Wexton (D-VA10) and Tom Cole (R-OK4). In April, Senators Tim Kaine (D-VA) and Jerry Moran (R-KS) introduced a bipartisan Senate companion bill (S 1521). Both would take penalties that the U.S. Securities and Exchange Commission collects from pharmaceutical, cosmetic, food supplement, and medical device companies that violate the Foreign Corrupt Practices Act, and redirect them to critical research into rare pediatric diseases. Under the Gabriella Miller Kids First Research Act 2.0, these penalties would be perpetually designated for childhood cancer and disease research, instead of going into general treasury as they do now.

Join us in calling on Congress to pass the Gabriella Kids First Research Act 2.0. Learn more and sign the childhood cancer community letter of support at the Bridge To A Cure Foundation Kids First 2.0 landing page.

We need a national healthcare strategy to cut waste and redirect billions, especially toward the fight against childhood cancer.

The United States’ bloated healthcare spending is projected to surpass $4 trillion this year — up from $3.81 trillion last year, according to a report from the Centers for Medicare & Medicaid Services. Most startling of all, those projections “do not account for spending related to the coronavirus epidemic.”

Even before the pandemic, our nation was spending 18% of GDP on healthcare — almost twice as much per capita as other high-income countries. At least a quarter of all that spending is waste, according to a study published in the Journal of the American Medical Association (JAMA).

If we were to redirect even 1% of that wasted money  — $1 billion — to fighting childhood cancer, that would be double the $500 million the government plans to spend over the next 10 years to build a National Childhood Cancer Database.

Building that database is our top priority at the Bridge To A Cure Foundation in our fight against the most common cause of death by disease for children in America. Yet the $50 million the government plans to spend annually is peanuts compared to what we need to truly accelerate the search for cures and save children’s lives.

We need to boost that funding, and reining in waste is a good place to start.

The JAMA study found that approximately 25% of healthcare spending — between $760 billion and $935 billion annually — “can be characterized as waste.” Some key areas where money is being wasted, and estimated ranges of the amount wasted, include:

• Failure of care delivery, $102.4 billion to $165.7 billion
• Failure of care coordination, $27.2 billion to $78.2 billion
• Overtreatment or low-value care, $75.7 billion to $101.2 billion
• Pricing failure, $230.7 billion to $240.5 billion
• Fraud and abuse, $58.5 billion to $83.9 billion

Despite potential waste close to $1 trillion, the report identified just $191 billion to $286 billion in savings from interventions to address the problem.

Another report found that 10% of healthcare spending in the U.S. goes toward end-of-life care, typically defined as care in the last six months of life. Of the $3.65 trillion Americans spent on health care in 2018, $365 billion of it went to end-of-life care.

There is also a well-documented disparity in money raised to fight different forms of cancer. For instance, breast cancer gets the lion’s share of funding at $460 million, accounting for a third of all cancer-specific nonprofit revenue. Childhood cancer accounts for $177 million, about 13%. The large amount of money focused on breast cancer has resulted in many advances in treatments.

The average age at diagnosis of breast cancer is 61. In contrast, the average age that a child is diagnosed with cancer is 10. This calculates to 67 years of life lost when a child dies from cancer, compared to an average of 16 years lost on average to breast cancer.

We are not accustomed to thinking of mortality in such terms. Our nation has not faced the hard conversations to decide where our healthcare priorities should be. We spend 10% of healthcare dollars to keep people alive for the last six months of their lives and consider it an essential part of healthcare.

We can and must do much more for sick children who deserve an opportunity to live their lives and chase their dreams.

Much of the waste in our healthcare system is due to our lack of a national healthcare strategy. We have no unified policy that governs how we spend healthcare dollars. Developing such a strategy would help us to define our priorities and provide a blueprint for how we should be spending (and not wasting) our money.

A national healthcare strategy is a document that outlines a country’s priorities, budgetary decisions, and course of action to improve and maintain the health of its people. Rather than having such a comprehensive policy, the US relies on national health initiatives, strategies, and action plans, a series of plans to address specific diseases, conditions, and issues. But this siloed approach does not help us answer the big questions about how to prioritize healthcare spending, which is often driven by a “squeaky wheel gets the grease” mentality rather than overall vision.

We need to stop doing what we’ve done, and move toward finding lasting solutions for childhood cancer and many other diseases. We won’t do that by looking at each disease in isolation, but by taking a holistic look at what our nation needs to help people live healthier lives.

When we get serious about weeding out waste in our healthcare system, and making tough choices about how much we should spend on end-of-life care, we will free up billions or even trillions of dollars. With a national strategy, we could target those savings to initiatives that make the most difference — such as building a National Childhood Cancer Database, streamlining the clinical trials process, and unleashing the power of artificial intelligence to fight disease.

Children battling cancer and their families have been forced to abandon the idea of a “comfort zone.” We need to get out of ours, break out of the status quo of waste and inefficiency, and give researchers the tools they need to finally conquer the diseases that rob kids of their childhoods and their lives. We can do this through Bridge To A Cure Foundations’ strategic imperative to implement a new approach to funding childhood cancer research.

Where there is a will, there is a way. The question is, do we have the will?

The mission of the Bridge to a Cure Foundation is to increase the pace and success of childhood cancer research. In order to do that, we need to remove barriers to finding cures and effective treatments. The clinical trial process is one such barrier. Without clinical trials, there are no new drugs. In this blog we examine:

• Why we need childhood cancer clinical trials.
• Proof that today’s clinical trials are a debacle.
• The reasons why the current process is failing.

Why we need childhood cancer clinical trials

• To ensure that the drug(s) are effective. “Children and adolescents are not small adults, and their bodies’ physiology and chemistry react very differently to illness and disease. Thus, pediatric clinical trials are critical to developing treatments and cures for childhood disease and illnesses.”
• To identify harmful side effects and “provide reliable evidence of treatment effects by rigorous controlled testing of interventions on human subjects.“

Proof that today’s clinical trials are a debacle

• In the last 25 years, the FDA has received only 30 applications for new drugs for use in pediatric-specific oncology.
• Few drugs have been developed — Since 1980, fewer than 10 drugs have been developed for use in children with cancer.
• The few drugs that have been developed have not delivered a cure and have been appallingly harmful and ineffective. As a result:
  • Cancer remains the number one cause of death by disease among children.
  • There has been no change to the survival rate for children with brain and other nervous system cancers for the past 20 years.
  • Even with survival defined as a child living for a mere five years, only 75% of childhood cancer patients meet that yardstick.
  • More than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age.
• Many clinical trials for children are abandoned and their results never published.
• Few clinical trials are conducted in childhood patients compared to the number of industry-supported clinical drug trials conducted in adults, a 2012 study found.

Why the current childhood clinical trial process is failing

• The criteria for approval is insufficiently vigorous — Children are considered survivors if they live a meager five years. If a child surviving five years is a goal researchers can celebrate and be rewarded for, then we should not be surprised that that’s what our solutions deliver. The five-year measurement fails to acknowledge the child’s horrific suffering, the emotional strain on parents and siblings, or the financial impact on the family.
• Lack of participation — One study identified 30 potential barriers to participation in childhood clinical trials including a relatively small population of available participants; high cost and lack of incentives for pharmaceutical companies to perform drug trials; potential legal risk to the pharmaceutical sponsor; ethical concerns regarding participation of children in trials; and a lack of adequately trained pediatric investigators.
• Lack of Funding — Pharmaceutical companies won’t invest. “One significant challenge in developing drugs for children is the perspective that pediatric medicines do not provide industry with similar financial rewards as adult medicines,” said Benjamin Ortiz, MD, who formerly served as Medical Officer in the Office of Pediatric Therapeutics at the FDA.
• The pharmaceutical industry “may have been reluctant to study medicines in children” for several reasons, another NCBI study says in an obvious understatement. “The market for the sale of many drugs for children is smaller than that for adults, and therefore investment in childhood drug testing might be less attractive financially. Other reasons cited in this report include ethical difficulties, problems with blood sampling, and difficulties in recruiting sufficient numbers of children.”
• Pharmaceutical companies won’t provide drugs — “Access to drugs and the ability to explore them are the biggest barriers to changing standard of care for pediatric patients,” says childhood cancer expert Patrick Brown, Associate Professor of Oncology and director of the Pediatric Leukemia Program at John’s Hopkins. “We can’t mass-produce drugs, so we usually rely on drug companies to provide drugs for clinical trials,” says Brown. “The much smaller number of patients with childhood cancers compared to adult cancers and the risk of something going wrong with a drug being tested in children can make pharmaceutical companies reluctant to provide drugs.”
• The current clinical trials process favors research into diseases that affect adults over those that afflict children — There are over 300,000 clinical trials available today worldwide, of which there are only 26 childhood clinical trials in the U.S. (https://pediatrictrials.org).
• Ethical concerns — “Pediatric trials are more challenging to conduct than trials in adults because of the paucity of funding, uniqueness of children, and particular ethical concerns,” says a study from the National Center for Biotechnology Information (NCBI), which is under the National Institutes of Health.

We need a new national strategy and commitment to improve the clinical trials process for childhood cancer drugs and therapies. In part 2 of this blog, we will explore what needs to be done.

To read our prior posts providing solutions to improving our approach childhood cancer research, visit Bridge to a Cure.

The Bridge to a Cure Foundation is the lead advocate for modernizing our approach to childhood cancer, with a priority on building a childhood cancer database to speed up the search for cures. We have met and gained the support of over 120 institutions and practitioners, including the former NCI Director Ned Sharpless, who has become a forceful proponent and driver of this initiative in Washington. To learn more about the foundation and add your support, visit Bridge to a Cure.