The landscape of pediatric cancer research is undergoing a dramatic transformation, driven by a determined spirit of collaboration, data sharing, and technological innovation. This shift is fueled by a growing understanding of the unique challenges faced by young patients and a collective determination to find cures. Bridge To A Cure Foundation played a leading role defining and transforming the approach to pediatric brain cancer.

A Shared Vision

In recent years, researchers, clinicians, and patient advocates have formed powerful alliances to accelerate the speed at which information is gathered, organized, and shared. Organizations like Bridge To A Cure partner, The Children’s Brain Tumor Network (CBTN), have fostered cooperation and accelerated research so that scientists can identify promising findings, uncover new insights, and develop more effective treatments by sharing data, expertise, and resources.

The Power of Data

Data is the lifeblood of modern research, and the pediatric cancer community has recognized its immense potential.

Initiatives like the Pediatric Brain Tumor Atlas (PBTA) are where support from Bridge To A Cure ,and other nonprofits, can have a greater impact. The PBTA is a groundbreaking initiative that leverages the power of multi-modal data from over 8,000 enrollees. This rich dataset, encompassing genomic information, clinical records, digital imaging, and more, provides a comprehensive view of each patient’s journey. By unlocking the insights hidden within this data, researchers can develop more targeted and less toxic therapies, ultimately improving patient outcomes.

Government Support and Innovation

Governments worldwide have also recognized the importance of supporting pediatric cancer research. Increased funding for research initiatives has allowed scientists to explore new avenues, such as immunotherapy and gene therapy. Additionally, advancements in artificial intelligence and machine learning have opened new possibilities for drug discovery, clinical trial design, and personalized medicine.

Bridge to a Cure is proud to support collaborative efforts that are transforming the landscape of pediatric cancer research.

The Gabriella Miller Kids First Act has created a powerful platform for researchers to share data, insights, and expertise. By making the CBTN PBTA dataset accessible to the global research community, we are fostering innovation and accelerating the pace of discovery. Together, we can build a future where every child has the chance to thrive.

A Culture of Collaboration

The culture of pediatric cancer research has evolved significantly, with a greater emphasis on collaboration and open science. This movement away from competitive research models in pediatric research has paved the way to real progress in pediatric cancer research and understanding congenital disorders. Researchers are increasingly sharing their findings and working together to address complex challenges. Forums like the Bridge To A Cure-sponsored Children’s Brain Tumor Network Summit, attended by hundreds of scientists and technologists in Virginia this past October offer opportunities for the pediatric brain tumor research community to explore ideas together. This collaborative approach removes traditional research barriers and accelerates the pace of discovery.

The advancements in pediatric brain tumor research in recent years is directly attributed to a collaborative approach within and across institutions. Childhood cancer nonprofits should do the same.  Next month’s blog will begin to explore this opportunity.

Our goal for a childhood brain tumor cancer cure by 2030 continues to progress. Our enthusiasm and optimism about the potential of artificial intelligence (AI) in revolutionizing the search for a cure for childhood brain tumor cancer is why. The intersection of advanced technology and medical research holds immense promise, and AI stands out as a powerful tool in this endeavor.

AI algorithms can significantly enhance the analysis of vast and complex datasets related to childhood brain tumors. The ability of AI to process and identify patterns in large sets of genetic, clinical, and imaging data allows researchers to unravel intricate connections that may contribute to the development and progression of these cancers. This, in turn, accelerates the identification of potential therapeutic targets. Thanks to our alliance partner at the Children’s Brain Tumor Network (CBTN), these data sets are now available to researchers worldwide.

Indeed, AI-driven image analysis plays a crucial role in the field of medical imaging, aiding in the early detection and precise monitoring of brain tumors.

By leveraging machine learning algorithms, medical professionals can obtain more accurate and efficient results from imaging studies. This expedites the diagnosis and facilitates timely interventions, thereby improving the prognosis for young patients.

In one promising study by CBTN, 250 brain tumor subject scans were used to generate an AI algorithm. This algorithm generated 3-dimensional segmentations automatically, making note of any tumor progression. This model effectively captured tumor progression earlier than the traditional method in more than half of the cases.

Additionally, the application of AI in drug discovery is a game-changer for developing targeted therapies. By simulating and predicting the interactions between various drug compounds and specific cancer biomarkers, AI expedites the identification of potential drugs that could effectively combat childhood brain tumors. This approach not only reduces the time and resources required for drug development but also increases the likelihood of finding treatments tailored to the unique characteristics of each patient’s cancer. In fact, time has been reduced from 12 years to 4 years. Truly a game-changer.

AI enables the personalization of treatment plans through the analysis of individual patient data. This tailoring of therapies based on a patient’s genetic makeup, response to treatment, and other relevant factors enhances treatment efficacy while minimizing potential side effects. The era of precision medicine, powered by AI, offers a more targeted and less invasive approach to treating childhood brain tumors.

The integration of artificial intelligence into the realm of childhood brain tumor cancer research holds immense promise. From deciphering complex datasets to improving diagnostic accuracy, streamlining drug discovery, and enabling personalized treatment strategies, AI stands as a catalyst for innovation in the quest for a cure. As we continue to explore the vast potential of AI in healthcare, we at Bridge To A Cure Foundation are hopeful that these advancements will bring us closer to a future where childhood brain tumors are not only treatable, but ultimately curable.

New studies show that machine learning will forever change the diagnosis and treatment of brain tumors.

After decades of humankind accomplishing amazing feats, the children’s cancer space has continued to fall short. In the last forty-plus years, just four treatments have been developed—and nothing is close to a cure. That’s why, when we founded Bridge To A Cure Foundation, we exclaimed, “We’ve had enough.” We set out on a mission to collaborate with those who unleash discovery and accelerate breakthroughs. And, we’ve partnered with those willing with us to lead the charge: including the Children’s Brain Tumor Network (CBTN) and St. Baldrick’s Foundation. You can learn more about these partnerships here.

Our judgment to build these collaborative relationships has not been misplaced.

Artificial intelligence (AI) is something we hear about frequently these days. Essentially, AI enables the completion of complicated tasks using powerful, advanced computing technology. AI has demonstrated it can be assigned a task that may take humans months or years to complete and complete it in just days or even minutes. In the children’s cancer research space, it’s become potentially the biggest buzzword of the year—and for good reason. Because of the tremendous efforts of many in the Bridge To A Cure network, when it comes to AI applications in childhood cancer, big things are happening.

The Pediatric Brain Tumor Atlas gives researchers access to large and comprehensive enough data that AI is now being introduced to make better diagnoses and treatment protocols for children with brain tumors. This, in turn, means researchers are better informed—which translates to a better chance at a bright future for our most at-risk cancer fighters.

Some ways AI can advance progress for sick kids is by:

• Near-automatic detection of brain tumors on MRI scans
• Providing subtype predictions that can lead to quicker, more accurate diagnosis
• Help doctors identify the most appropriate treatment options for each individual child
• Assist in detecting disease progression

Without the CBTN Pediatric Brain Tumor Atlas, these monumental efforts simply wouldn’t be possible. Efforts such as:

Predicting underlying tumor subtypes

There are dozens, if not hundreds, of childhood brain tumor subtypes. This is one of the many reasons that research in this area is so complex. Led by Benjamin Kaan from the Harvard Medical School and using the CBTN data, researchers are developing methods that allow quicker and more accurate identification of tumor subtypes. These new technologies can help bridge the knowledge gap between researchers’ limited understanding of the characteristics of certain types of tumors. AI insights will allow researchers to better help children by matching each individual’s tumor to a specific therapy that can best help them.

Advancing imaging diagnostics

Dr. Nabavizadeh and his team at the Children’s Hospital of Philadelphia (CHOP) are focused on impact rather than popularity. This doesn’t mean that their work should go unnoticed, however. As the Director of Imaging at CHOP and an important research partner for CBTN, his focus now turns to improve MRI imaging procedures. Such procedures that will allow not just the quicker identification of tumor subtypes, but also better detect how tumor progression responds to treatments, allowing a quicker understanding of what is working and what isn’t.

In the overwhelming majority of studies performed so far, the implementation of AI technologies in imaging demonstrates superiority in areas from tumor diagnosis to dosage calculation for radiotherapies. In many cases, AI performs with more accuracy than clinical experts alone. Artificial intelligence capabilities for children’s brain cancer have grown exponentially in recent years — and although this progress is paramount, the fight isn’t over yet. Projects like the one led by Dr. Nabavizadeh face an endangering lack of resources that stymie technological advancement. Learn more about how you can support these efforts at the Bridge To A Cure website.

Initiative to build an exhaustive, accessible brain tumor database gains buy-in from leading pediatric cancer players.

Brain and central nervous system tumors are the deadliest forms of childhood cancer, and the #1 killer by disease of kids in the U.S. Yet there has never been a single drug developed to stop these malignant tumors from taking children’s lives.

For this reason, Bridge To A Cure Foundation is focused on removing key barriers that stand in the way of curing childhood brain cancer. At this year’s halfway point we want to update our supporters on the tremendous progress being made toward a 50% reduction in deaths due to childhood cancer by 2030.

Our 2021 strategic imperatives include:

• Development of an accessible, robust childhood cancer database;
• Establishment of a clinical trial process/protocol designed for children; and,
• Initiation of new approaches to fund childhood cancer research.

Creating a database that contains everything we need to fight childhood brain cancers is our top priority this year.

We’re driving advancement toward building a database that will contain everything we know and need to develop the treatments that successfully fight brain tumors. To this end, we’re relentlessly pushing forward on these key fronts:

Partnership Funding & Counsel

• Pediatric Cancer Database Commons (PCDC): Bridge to A Cure Foundation granted PCDC $50,000 to accelerate the completion of a childhood brain tumor dictionary that gives the scientists, researchers, and oncologists a single, unified vocabulary worldwide for recording and interpreting data.
• Children’s Brain Tumor Network (CBTN): CBTN is a model for the national childhood cancer database Bridge To A Cure is advocating to make a reality. This repository houses more than 50,000 childhood brain tumor samples, making it the country’s largest of its kind. With these records they compile high quality data and make the information available to any researcher worldwide who requests it. Bridge To A Cure is a member of the CBTN Executive Council, helping to push for institutional buy-in and peer foundation support. In June, Bridge To A Cure Foundation provided a
• St. Baldrick’s Foundation: In June, Bridge To A Cure Founder and President Robert Martin joined the board of directors of St. Baldrick’s Foundation, the largest non-government funder ofchildhood cancer research grants. Bridge To A Cure Foundation pitched in $10,000 toward the more than $310 million St. Baldrick’s has raised to fund 1,620 research grants at more than 379 in 29 countries. It is the goal of Bridge To A Cure to influence this important funding organization to support not only research projects, but also development of a robust, unified database from which all researchers can draw.

Resource Building

As Bridge To A Cure Foundation continues to become more invested with these key partners and the childhood cancer community, it has become imperative to develop relationships to fill resource gaps with best-in-class consultants and professional service providers.

Bridge To A Cure has reached its first such agreement with Kirkland & Ellis, one of the world’s largest law firms, to provide pro bono counsel related to the building of a national childhood cancer database. Discussions are underway to secure proven consultants with strategic planning, database monetization, and communications expertise.

Advocacy

• During Brain Tumor Awareness Month in May, we outlined our plan to improve data collection, storage, and access in collaboration with the groups mentioned above, with the goal of eradicating brain tumors in children.
• Gabriella Miller Kids First 2.0 Act: We’re calling on Congress to pass the Gabriella Miller Kids First 2.0 Act, which would fund childhood cancer and disease research in perpetuity without relying on taxpayer dollars. It’s common-sense legislation that can save thousands of lives. To learn more and add your voice to the call on Congress, click here.
• National Cancer Institute: We continue to push for the National Cancer Institute’s Childhood Cancer Data Initiativeto fund consolidation and expansion of childhood brain tumor data to develop a model that can be used for all childhood cancers.
• Database Consortia: There are currently three consortia that have built their own unique databases for pediatric brain tumors: Children’s Brain Tumor Network, Pediatric Brain Tumor Consortium(PBTC) and Pacific Pediatric Neuro-Oncology Consortium(PNOC). Bridge To A Cure is uniquely positioned to work all three groups to achieve our goal of consolidating these three distinct databases into one.

By harmonizing existing clinical research data and leading international efforts to standardize data collection, we’re breaking down long-standing barriers that have held back advancements in research on rare childhood diseases. We also eliminate waste and duplication as we streamline research toward a cure.

Our commitment to creating new efficiencies in children’s brain tumor research extends to our own operations. Bridge To A Cure Foundation is building relationships to supplement resources in areas where we need support, such as contracting pro bono legal support and strategic planning services.

We need your continued support as we continue to leverage our resources toward a bold goal: to unify and transform the pediatric cancer community to reduce childhood cancer deaths 50% by 2030. Please join our momentum to dismantle the barriers that have left children and their families without hope for too long.

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?

We are sparking collaboration to solve the immense challenges of  building a comprehensive database to fight childhood cancer.

At Bridge To A Cure Foundation, we sometimes hear praise such as “Congratulations on securing the national childhood cancer database initiative from the NCI!” While we are proud of our work building the groundwork for a National Childhood Cancer Database, we know that this is not the end, but only the beginning.

It’s just not acceptable that childhood cancer remains the number one cause of death by disease for kids, and a source of suffering and worry for so many families. We must keep pushing for the breakthroughs needed to find cures and effective treatments for the 16,000 kids diagnosed annually, and the countless children and families already battling cancer.

We believe building a robust and comprehensive database is the most important thing we can do to speed the delivery of effective treatments, and even cures. Yet there are many obstacles that lie in the way, including the immense challenge of harmonizing data of many different types and from many different sources.

As part of our mission to connect the people and resources needed to find cures, we are teaming up with one of the leading institutions on the Pediatric Cancer Data Commons initiative (PCDC), The Volchenboum Lab at the University of Chicago. They are doing the painstaking work of creating a universally shared language to make data mining viable.

This work is critical to address substantial challenges inherent in creating a national effort to sequence childhood and young adult cancers as outlined in a report of the Board of Scientific Advisors on the Childhood Cancer Data Initiative (CCDI).

CCDI is the government initiative to create a national database. PCDC is a member of the CCDI that is helping to shape how this new database will function effectively. PCDC has been working since 2004 to create lexicons (standardized language) for each form of childhood cancer so that the information in the data is consistent and can be clearly understood. Part of that work requires overcoming logistical and patient privacy complexities in existing datasets.

For example, the Therapeutically Applicable Research to Generate Effective Treatments (TARGET) program applies a comprehensive genomic approach to determine molecular changes that drive childhood cancers. Its goal is to guide development of more effective, less toxic therapies.

The usefulness of any data depends largely on being able to connect it to other sources of information. For instance, genomic data in TARGET is much more useful when connected with clinical information being compiled by our partners at the Pediatric Cancer Data Commons. But connecting them relies on a privacy-preserving linked patient identifier. The NCI-funded Children’s Oncology Group (COG) solved the issue by having the Biopathology Center at Nationwide Children’s Hospital in Columbus, Ohio, replace patient-identifying data with a code that can be publicly displayed while preserving patient privacy.

This is just one example of the challenges of creating a seamless database. There are many other issues relating to policy, regulations and privacy ethics that will have to be addressed, as well as other technological, logistical and human resource hurdles that must be overcome.

These include the need for:

• Computational biologists: Research into promising “targeted therapies” that disable cancer cells in specific ways is fueling a push to understand the basic mechanisms of cancer growth. This is creating massive amounts of data and driving demand for “translational researchers with computational, analytical, and clinical trial expertise who can turn data into concrete knowledge.”
• Visualization tools to extract and exploit information from genetic and molecular profiles and to develop artificial intelligence algorithms that can “understand” and respond to data.
• Data architecture and solutions to adapt to innovations of platforms, structures and tools, and solve problems such as sequentially analyzing and aggregating data on different clouds.
• Global reach. We need to develop integrated analysis with large databases on other platforms in other countries to give researchers into childhood cancers access to all the information they need.

Working with organizations such as The Volchenboum Lab and others, we are working to increase collaboration to address these and other challenges.

September is Childhood Cancer Awareness Month

In dedication of Childhood Cancer Awareness Month, we’re giving you a new opportunity to help support our mission and the fight against childhood cancer.

With a gift of $50 or more to Bridge To A Cure Foundation, you’ll receive the new SuperClara coloring book. Kids color along on an adventure sure to inspire fun and deliver an injection of courage. This uplifting story, based on the book “SuperClara — A Young Girl’s Story of Cancer, Bravery and Courage!,” helps put into perspective the challenges and disappointments we all face.

To donate and receive the new SuperClara coloring book, please click here.

As recession, debt, and declines in charitable giving jeopardize funding, we offer a new model to beat childhood cancer.

With the pandemic and recession reaping ongoing economic turmoil, organizations leading the fight against childhood cancer face funding shortfalls that threaten to set back efforts to find cures and effective treatments.

Even before the pandemic and recession, pediatric cancer was underfunded, despite the fact that cancer is the number one cause of death by disease among children. Only 4% of the billions of dollars the government spends annually on cancer research goes toward childhood cancer. Reasons funding for pediatric cancer research lags spending on adult cancers include:

• Childhood cancers are relatively rare compared to adult cancers, yet each year an estimated 15,780 American kids are diagnosed with cancer and another 1,800 die.
• Priorities for government funding and pharmaceutical investing are determined by the biggest bang for the buck, period. Children (ages 0-19) represent only 1% of new cases each year, or 4% if based on the life-years potentially saved.
• Childhood cancer does not get the same level of publicity as adult cancers, such as the pink ribbons that adorn so many products during Breast Cancer Awareness Month. Did you know, for instance, that September is Childhood Cancer Awareness Month?

At Bridge To A Cure Foundation we are committed to revolutionizing how we fight childhood cancer, through building a comprehensive pediatric cancer database, boosting collaboration, and promoting our Millennial Organization model to increase investment in finding cures. But like so many charitable organizations, we face a funding crunch due to the pandemic and recession. The overall economic outlook is not reassuring.

Spending on the pandemic and other government programs is expected to result in a $7 trillion unbudgeted hit to the national debt, economists and wealth managers from top investment firms predict.[1] That includes $4 trillion in government spending to respond directly to the pandemic, more than $2 trillion in infrastructure spending, and declines in tax revenues of at least $500 billion.

The national debt is expect to rise to $32 trillion by the end of this year — 150 percent of GDP and almost twice what has historically been deemed “financially unstable.” Stabilizing our economy and reducing debt levels will be priorities for the next five years, if not longer. This is expected to result in significant tax increases on the wealthy and corporations.

As a result, the revenue that cancer foundations and research institutions have depended upon will decline sharply. Foundations are already reporting dramatic declines in giving. For instance:

• The American Cancer Society expects a $200 million shortfall due to pandemic, a funding gap that has forced it to cut an estimated 1,000 positions across the US.
• Economic damage from the pandemic is causing people to forgo donations and could devastate charities more than the Great Recession did, Michael J. Nathanson, former chairman of the National Brain Tumor Society, Cure GBM, and Pediatric Cancer Cure, predicts in a recent op-ed.
• Medical charities that have relied on in-person fundraising events have been hit hard by cancellations, with some having to take out loans through the government’s Paycheck Protection Program to stay afloat.
• The global health emergency has shut down scientific research labs across the country, leaving some scientists scrambling to save their work. It has also disrupted clinical trials and fundamentally altered “essential” cancer treatments. While some labs have started to reopen, the long-term effects on research are unknown.
• The pandemic has been “devastating to clinical trials,” delaying some and diverting funds earmarked for cancer R&D to COVID-related projects. About a quarter of the delayed trials involved cancer treatments, “interrupting the ability of patients to obtain treatment in clinical trials,” said Dr. Richard Schilsky, chief medical officer of the American Society of Clinical Oncology.
• The pandemic has created a nightmare scenario for children facing cancer and their families. Cancer patients who contract COVID-19 face a 16-fold increased mortality risk, according to a recent study.

The pandemic has diverted massive resources from the fight against cancer and is expected to continue to do so, researchers state in an editorial titled “The future of cancer research after COVID-19 pandemic: recession?”

“Many opportunities related to the development of new cancer drugs will be missed because of the redirection of funds for the study of SARS-CoV-2. In fact, a part of the governmental funds and resources of pharmaceutical companies that are dedicated to cancer therapies trials will be transferred to studies on COVID-19 detection, testing, treatment and vaccines.”

Dr. Ned Sharpless, director of the National Cancer Institute, predicts the pandemic could reverse the US streak in improved cancer mortality that’s lasted more than 25 years.

All of these factors will disproportionately affect prospects for funding research into curing childhood cancers, given the tiny fraction of total cancer funding that goes to pediatric cancer research.

Given the outlook for the economy, the pandemic, and research, foundations and charities devoted to fighting cancer, and pediatric cancer in particular, are bracing for dramatic declines in giving. The result will be cutbacks in existing research projects and lack of funding for potential breakthroughs. Worse, the hopes of cancer victims who have put their faith in science will be shattered.

From crisis and adversity often springs opportunity through new and better ideas. The model for Childhood Cancer Research advocated by the Bridge to a Cure Foundation does just that. In three years we have laid the groundwork to:

• Build a National Pediatric Cancer Database to allow researchers to access to all available information on the diseases, drugs and treatments, and to identify patterns that will help them prevent, diagnose, treat, and ultimately cure cancer.
• Boost Collaboration and Rethink Reward Systems to remove barriers to pediatric cancer research, including rewarding partnerships among teams, disciplines, and even companies and institutions by making teamwork a criteria for awarding grants.
• Tap Artificial Intelligence and Machine Learning to find new ways to attack disease and overcome barriers posed by the existing patchwork of data.
• Boost Investment to Find Cures for Childhood Cancer through our Millennial Organization, a new model for valuing companies based on their contributions to improving the human condition. Our goal is to encourage pharmaceutical and other corporations to invest in pediatric cancer initiatives previously considered unjustifiable. We are working to identify top business, medical and academic institutions to lead this initiative.

We’ve come too far to let the pandemic and its economic turmoil derail our efforts to beat the scourge of childhood cancer. With so many worthwhile organizations working to address humanitarian needs during the crisis, we ask you to consider Bridge To A Cure Foundation in your giving to help us keep hope alive for children and their families facing the darkest diagnoses. Learn how you can support our work at bridgetoacure.org/support, and thank you!

[1] Based on research and interviews with a UBS Economist, Strategist Wealth Management executive, and other wealth managers from other investment firms.

Government regulations and controls hinder discovery, treatment, and affordability

The mission of the Bridge to a Cure Foundation is to increase the pace and success of pediatric cancer research. In order to do that, we need to remove barriers to finding cures and effective treatments. In this blog we will look at:

• How government red tape hinders cancer research.
• Costs of childhood cancer to families and society.
• Why we need a national strategy to align priorities and streamline the search for cures.

1. Government red tape and cancer research.

The cost of government regulations is well known to the industries that pay the burden. One study put the cost of new regulations implemented in the Obama era at $100 billion. These costs are not just born by manufacturers and utilities, but also in the research arena where agencies such as the Food and Drug Administration have stymied development of drugs to treat cancer. Thousands of families have suffered as a result of government red tape.

Dr. Vincent DeVita, who developed the first curative chemotherapy protocol for adult cancer, argues that the FDA has held up vital cancer treatments through its cumbersome and outdated approval process. In his book The Death of Cancer, he says that bureaucracy is the only thing standing in the way of transforming cancer from a killer to a “chronic but survivable illness.”

DeVita argues that the FDA should not be approving drugs for treating cancer because it treats them like traditional drugs, not taking into account the fact that cancer patients may die without trial medicines. FDA approvals, he argues, are one of the biggest obstacles to patients receiving life-saving treatments.

“The FDA is approving drugs based on outdated methods,” he said in an interview. “It should approve new cancer drugs based on their safety profile and their ability to hit important molecular targets. And I think cancer centers have matured enough to handle all the early trials by themselves.”

The National Cancer Institute (NCI) and FDA should delegate responsibility for all phase I and II trials to NCI-approved cancer centers, he says. This would increase the speed of developing new drugs tenfold, and cost a lot less than the current system.

“Guidelines are backward-looking in a rapidly changing field like cancer,” DeVita says. “But what worries me more are the constraints on innovation. New approaches to treatment in this era of targeted therapy need maximum flexibility to mix and match treatments in order to control the wily cancer cell.” He also calls for greater collaboration between cancer treatment centers.

2. Government and the high costs of childhood cancer.

Since the early 1900s, medical special interests have been lobbying politicians to reduce competition. By the 1980s, the U.S. was restricting the supply of physicians, hospitals, insurance and pharmaceuticals, while subsidizing demand. “In too many areas of the economy — especially health care — free enterprise has given way to government control in ‘partnership’ with a few large or politically well-connected companies.” (Ryan 2012).

Meanwhile, a National Children’s Cancer Society survey of 449 families coping with childhood cancer found that 95 percent reported their child’s cancer caused a financial burden on the family. Among families who were not poor when their child was diagnosed, 10 to 15 percent became impoverished as a result of medical bills. A quarter of families reported losing more than 40 percent of their income to help pay the bills, and this did not even count out-of-pocket expenses like travel to hospitals and childcare.

These findings are not surprising when you consider that the average cost associated with each case of childhood cancer is $833,000. The average cost of hospitalizations for pediatric cancer is $40,000 — nearly five times as much as hospitalizations for other pediatric conditions. And let’s not forget that cancer is just one of the pediatric diseases that rob family finances. An estimated 30 million children in America struggle with a chronic disease or psychological disorder.

The economic cost to families and our nation is staggering. The emotional stress on families is not quantifiable — nor is what our nation forfeits from not having many of these children achieve their potential.

Disturbingly, the culprit contributing to this emotional and economic devastation is the medical industry’s antiquated approach to childhood cancer research and their influence on government.

3. Why we need a national strategy to align priorities and streamline the search for cures.

Government regulations should be linked to an overarching strategy that improves our individual and national health, safety, and economic conditions. Economic return must be part of the strategy.

Regulations on automobile safety and emissions are as example. A study by the Institute of Transportation Studies at the University of California, Davis found that added costs from such regulations are significant, but “represent only a modest part of overall vehicle cost increases.” Regulations “had little discernible effect on industry performance and activities,” with cost increases “largely accommodated within normal business and market planning processes of companies.”

The same cannot be said of government regulations restricting new cancer drugs, since they actually prevent patients who have been diagnosed with terminal diseases from accessing medications that are experimental in nature.

I am not arguing for eliminating all regulations, but rather for eliminating those that create barriers for research into cancer and other pediatric diseases — the kind outlined in a study by the Regulatory Transparency Project:

“Poorly designed regulations may cause more harm than good; stifle innovation, growth, and job creation; waste limited resources; undermine sustainable development; inadvertently harm the people they are supposed to protect; and erode the public’s confidence in our government,” the study found.

We should also work to eliminate regulations that drive up the cost of research and treatment in response to legal risk. On the other hand, we need new regulations to address the imbalance in funding for childhood vs. adult diseases. Here’s the dilemma:

• The 60+ age group is huge and they face many medical issues. It’s an attractive market for the pharmaceutical industry and other research institutions. But our youth are the future of our nation, the “seed corn” that hold the key to productivity and a better life.
• Despite their tremendous potential, children under 18 make up less than a quarter of the total population. Those suffering from serious diseases are an even smaller percentage. About 11,060 children in the United States under the age of 15 will be diagnosed with cancer this year. This accounts for less than 1 percent of all cancers. Yet while their numbers are small, the costs to families and society are enormous.

When it comes to new regulations, we should adopt ones that encourage collaboration, investment and promising new approaches. At the top of the list is building a national pediatric cancer database — one that will allow us to tap into the power of artificial intelligence to end the scourge of childhood cancer.

What regulations can be put in place to encourage government, research institutions, and private industry to do the right thing: collaborate and invest in our future? If the government can demand that carmakers invest in seatbelts, why can it not demand that pharmaceutical companies invest more in pediatric research?

It’s time to review our country’s regulatory strategy to eliminate regulations that are a barrier to research, and to add regulations and incentives to accelerate meaningful breakthroughs.

Redefining the role of government in pediatric cancer research is essential to achieving the breakthroughs so many children are counting on. To read our prior posts providing solutions to improving our approach pediatric cancer research, visit www.bridgetoacure.org.

The Bridge to a Cure Foundation is the lead advocate for modernizing our approach to pediatric cancer, with a priority on building a pediatric 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 www.bridgetoacure.org.

Young lives are lost daily because we’ve put blinders on research;
a National Pediatric Database will break down silos and shine light on finding cures

The cures for pediatric cancer and other terminal and chronic diseases are out there waiting to be discovered. Do we have the vision to find them?

As we examine what it will take to end the scourge of pediatric cancer and other “incurable” illnesses that strike kids, we’ve looked at what the following entities must do to change:

• Investors
• Donors
• Government (the National Cancer Institute)

Today we’ll look at research being conducted to fight pediatric diseases through public and private institutions. This is a vast area that encompasses work at major cancer research centers, universities, and children’s hospitals across the US.

There are hundreds such institutions working on different aspects of childhood health and disease – so many that no one seems to know exactly how many there are. For instance, there are more than 220 children’s hospitals where various forms of research are ongoing.

Yet despite all the research that’s going on, and billions of dollars spent, “the causes of most childhood cancers remain unknown,” according to NCI. This is one reason why cancer remains the leading cause of death from disease among children and adolescents in the US.

“Although substantial progress has been made in the treatment of several types of childhood cancer over the past five decades, progress against other types has been limited,” NCI states.

Research on childhood cancers and other diseases tends to be narrowly focused on specific drugs, treatments, and genetic or other causal factors. For this reason, there is good chance we may be missing the forest for the trees when it comes to finding cures.

For instance, the National Institutes of Health announced last year it had formed a new Trans-NIH Pediatric Research Consortium to coordinate pediatric research programs across its institutes and centers to “advance pediatric research on a global level.”

“The new consortium aims to harmonize these activities, explore gaps and opportunities in the overall pediatric research portfolio, and set priorities” among the 27 NIH institutes and centers that fund some aspects of child health research.

Yet when we at Bridge to a Cure contacted the consortium to find out if they were participating in building a National Pediatric Cancer Database, a spokesman referred us to NCI, saying, “This is an initiative of the National Cancer Institute.”

The consortium is made up of NIH officials. NCI is part of NIH. Yet they did not seem to be aware of what we believe is the most promising avenue for results in curing pediatric cancers and other diseases. This despite the fact that in FY 2017, NIH funded pediatric research grants and projects totaling almost $4.2 billion out of its annual budget of about $37 billion.

The main purpose of the NIH consortium is “to identify opportunities for collaborative research, identify gaps that need to be addressed, and try to harmonize the overall research effort at NIH directed toward child health.” So they should be deeply involved in work to create a National Pediatric Database that would combine everything we know about childhood cancers.

As we’ve pointed out, we need a National Pediatric Database now to empower researchers to:

• Access to all available information on the diseases, drugs and treatments to identify patterns that will help them prevent, diagnose, treat, and ultimately cure cancer and other diseases.
• Use the power of Artificial Intelligence and Machine Learning to search for synergies among existing conventional and alternative treatments and new ways to attack disease.
• Overcome hurdles posed by the existing patchwork of data, including data from unstructured electronic health records and other other sources collected for disparate purposes. Most existing databases “do not have sufficient quality to be used by AI algorithms to achieve the quality standard required for clinical trials.”

We have researchers with great minds spending mountains of money, yet there are many children’s diseases for which we don’t have a cure. This is unacceptable when we consider:

• In the United States in 2019, an estimated 11,060 new cases of cancer will be diagnosed among children from birth to 14 years, and about 1,190 children are expected to die from the disease.
• The most common types of cancer diagnosed in children ages 0 to 14 years are leukemias, brain and other central nervous system (CNS) tumors, and lymphomas.
• Ten to twenty million children and adolescents in the United States have some form of chronic illness or disability.

I believe the reason we don’t yet have cures or effective treatment for so many childhood illnesses lies in the fact that research today still lacks the unified database needed to tie together everything we know about these diseases.

It’s time for leadership of research institutions – whether they are cancer centers, universities, children’s hospitals, or other entities – to realize how a comprehensive national pediatric database could be a game-changer.

I am totally focused on building a national database that has everything we know about the specific diseases and every drug or treatment that could be used to attack those diseases, including:

• Causes of disease (still unknown for many forms of childhood cancer).
• Weaknesses in the diseases themselves (the approach most research centers take today.
• Bolstering the immune system and other systems such as angiogenesis and apoptosis to defend against disease.
• Fighting the energy sources that fuel disease processes.

To be truly comprehensive, a National Pediatric Database must also include data from every medical file of every child that has a specific disease, and information on non-traditional treatments and how they interact with conventional medicine. Right now we don’t have this data on conventional – let alone alternative – treatments. This is the system we must build if we are serious about stopping the diseases that rob children of their lives and their futures.

Our research institutions are full of skilled and dedicated people who want to achieve these breakthroughs. We must give them the data and the technological support they need to make sense of it. Artificial intelligence and quantitative analysis will give us the ability to hunt for synergies in drugs and treatments that hold the keys to cures.

Think about it: These cures could be staring us in the face. Will we have the vision to see them?

The resources are available today to cure pediatric cancer. We’ll explore this in the third installment of a five-part series that provides the framework necessary to unlock these resources. The key drivers are:

• Investors (See May blog)
• Donors (See June blog)
• Government
• Practitioners
• Educators

Today’s blog focuses on government, specifically the National Cancer Institute (NCI) – what it needs to do better and what it needs to stop doing. Let’s start by looking at the National Cancer Institute’s FY 2020 Annual Plan and Budget Proposal. It calls for funding in four areas to:

• Develop the workforce of cancer investigators.
• Reaffirm our commitment to basic science to drive novel approaches and technologies.
• Innovate the design, administration, and analyses of clinical trials.
• Increase data aggregation and interpretation to speed work across the cancer enterprise.

The first two areas are what the NCI should stop doing. The latter two are what the NCI needs to do better and soon.

What NCI needs to stop doing

1. NCI, like other government institutions, has grown so large and diverse in its responsibilities that it is inefficient and ineffective. Like the failed model of corporate conglomerates that were once popular, NCI is trying to do too many things. The result is an unfocused approach to fighting cancer with incremental results.
2. Like all large bureaucracies, NCI’s focus is on maintaining and increasing the flow of taxpayer dollars to its programs. The institute’s 2020 budget proposal calls for spending more than $6.5 billion, with $662 million in new spending, including an additional $70 million for “understanding the mechanisms of cancer” and an additional $35 million for “strengthening the cancer research enterprise.”

Why should this be the role of the federal government, when the private sector, universities, and medical institutions can do the job better? It should be up to each individual to decide which institutions they want to donate to or invest in, not the government. Government should not be in the business of human resource development, or investing taxpayer money in the private sector. This is a distraction that helps explain why we still don’t have a robust national pediatric database, nor a clinical trial process designed specifically for pediatrics.

What NCI needs to do better

1. Improve the clinical trial process. This is and should be the responsibility of NCI. It is important that all research follow a standard protocol. However, what we have today is outdated and was never designed for pediatric cancer research. Studies have uncovered flaws in the clinical trials process, including the FDA setting benchmarks that are outdated by the time trials start, and testing inadequacies that lead to experimental drugs failing in the final and most costly phases of trials. We should hold NCI accountable for delivering a faster and more effective clinical trial process and monitoring the results.
2. The fourth area in the latest budget, data aggregation and interpretation, is by far the most important. Translated, this means building a robust national pediatric cancer database – one that includes information from every single institution involved in pediatric cancer, including research, patient data, clinical studies on drugs, and research into promising alternative therapies. This will require addressing many of the barriers that prevent organizations from collaborating at the level required, including addressing privacy laws and technology to convert handwritten patient records into digital formats.

Our government is too large; as a result, it is inefficient, ineffective, and poorly governed. It reminds me of the corporate conglomerates that dominated business in the 1960s and 70s, but disappeared in the 1980s because they were too large and unfocused.

Most private corporations today recognize the value of specializing in doing a few things well. It’s time for government to do the same, introducing the U.S. Millennial Government – where technology, focus, and organizational effectiveness generate results above expectations. In this case, NCI as a part of the U.S. Millennial Government needs to revisit its budget with a focus on building a robust national pediatric database, and modernizing and streamlining the clinical trial process.