IT’S CHILDHOOD CANCER AWARENESS MONTH

HERE’S WHAT MATTERS MOST!

Pediatric glioblastoma is among the most lethal and devastating childhood cancers. My family has lived this journey Documentary Film.mov – Google Drive

The truth is stark: progress has been painfully slow—not for lack of brilliant scientists or promising technologies, but because too many institutions choose competition over collaboration.

Prestigious centers are hoarding patient data, research findings, and funding. Some are even diverting scarce dollars away from hospitals that urgently need support, while building financial reserves far beyond what is required.

The result? Duplication of effort. Fragmented silos. Wasted time. Vast regions of the country without adequate resources. And while institutions protect their turf, children continue to die from a disease that has seen little meaningful progress in decades.

Over the past 50 years, billions of dollars and countless hours have been invested. Yet the return on that investment has been negligible. The culprit is clear: a siloed culture that donors have—often unknowingly—funded. We all know what must change.

If a cure is to be found, collaboration and transparency must replace competition and concealment. Institutions must explicitly commit to collaboration in their mission statements. This demands a culture shift—and donors have the leverage to make it happen.

What You Can Demand as a Donor:

• Open Data Sharing – Require institutions to share patient and research data without delay or restriction.
• Collaborative Trials – Expand access for families by insisting on multi-institutional clinical trials.
• Collective Investment – Direct funding toward shared infrastructure—biobanks, genomic commons, AI platforms—where every dollar multiplies impact.
• Accountability – Ensure donor intent is honored; funds must advance cures, not inflate reserves.

Every child lost is a reminder that fractured efforts cost lives. A cure will not emerge from one laboratory or one hospital; it will come only from a unified front.

Your investment is precious. Make it count—insist that it fuels collaboration, transparency, and urgency. Together, we can demand results. Make your pledge below.

Click to sign the Donor Pledge for Collaboration in Pediatric Brain Cancer Research

CHILDHOOD CANCER AWARENESS MONTH DONORS

IT’S CHILDHOOD CANCER AWARENESS MONTH

RESEARCH INSTITUTIONS ARE THE BARRIER!

NOT THE RESEARCHERS

Pediatric glioblastoma remains one of the most devastating childhood cancers. My family has lived this journey Documentary Film.mov – Google Drive

The greatest obstacle to progress is not science or technology—it is culture. Too many prestigious institutions hoard data, guard funding, and even divert resources from hospitals that struggle to meet the needs of their patients. The result: duplication, silos, wasted resources, and entire regions left without adequate care. While institutions protect their turf, children are dying from a disease that has seen little meaningful progress in decades.

Why Change Is Non-Negotiable

• Rarity demands scale. No single center sees enough cases or holds enough data to solve this disease. Only pooled knowledge and shared resources can yield statistically valid insights.
• Collaboration accelerates progress. Unified trials and infrastructure reduce duplication, broaden patient access, and generate results in years—not decades.
• Resources are scarce. Every dollar consumed by competition or redundant effort is a dollar not spent advancing cures. Shared platforms ensure maximum impact.
• Mission must outweigh prestige. Institutional rivalries cannot be allowed to determine life-or-death outcomes for children.

For fifty years, billions of dollars and countless hours have been invested with negligible return. Progress has been stalled not by lack of ability, but by a siloed, protective culture. We know what must be done:

• Open, unrestricted data sharing across all centers.
• Shared infrastructure for biobanks, genomic data, and AI platforms.
• Joint clinical trials that expand access and accelerate results.
• Transparent research sharing to prevent duplication and expand the data pool.
• Equitable funding distribution that strengthens resource-limited hospitals.

If a cure is to be found, collaboration and transparency must replace competition and concealment. Every institution should embed transparency and collaboration in its mission.

The Path Forward

Change will not occur by good intentions alone. Institutions are unlikely to move independently. What is required is a pediatric glioblastoma summit—a forum where leaders agree on principles, establish timetables, and commit to implementation.

Childhood Cancer Awareness month is the time for each institution to pledge their support for such a summit; a summit that will knock down barriers, one that will advance collaboration, transparency, and urgency. Make your pledge below.

Click to sign the Institution Pledge to Drive Collaboration and Transparency

CHILDHOOD CANCER AWARENESS MONTH RESEARCHERS

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.

Five-year survival rates don’t begin to tell the story of the cruel toll cancer inflicts on innocent kids — and all who love them.

“No. No, this isn’t possible. This is wrong. All wrong. Someone run another test. Get me another doctor. For Christ’s sake, someone punch me and wake me up from this nightmare.”

This is how one mom described her feelings upon getting the cancer diagnosis that would lead eight days later to the death of her baby girl.

Losing a child has been called the ultimate loss — the deepest, darkest hole of grief into which a human can plunge.

Yet childhood cancer is so inexplicably painful, so agonizing, so brutal, that cancer charities, researchers, and oncologists take heart where they can. For many, it’s in statistics such as an increased five-year survival rate for kids with cancer.

In recognizing June, Cancer Survivors Month, The American Association for Cancer Research touts “spectacular advances in cancer research” that have lengthened lives. The American Cancer Society says 84% of children with cancer now survive five years or more, a huge increase since the mid-1970s, when the five-year survival rate was about 58%.

They are measuring childhood survival rates like a batting average in baseball. But a child’s struggle against cancer is a journey, not a single event. Both the distance traveled and the quality of the journey is how we should measure success. And right now, that journey remains fraught with massive physical, mental, and emotional suffering for kids and their families.

The statistics overlook the trauma routinely inflicted in the standard of care treatments — the trembling fear of the child anticipating her next visit, the family’s economic devastation, the stress and emotional anguish of watching your child suffer through painful and debilitating treatments that can last for years. All these can leave lifelong scars for those fortunate enough to survive to adulthood.

 Cancer Traumatizes Everyone in the Family

The horrors that kids and families experience in battling cancer are cruel and agonizing, as anyone who has lived through this ordeal can attest. The pain and suffering children endure as they undergo standard cancer treatments spread devastation like tornadoes as they tear through parents, siblings, grandparents and other relatives, friends, and caregivers.

It starts with having to try to explain to a child that he or she has a potentially deadly disease — that the headaches, nausea, tiredness, swelling, lump, or aches in their bodies can’t be kissed or wished away. How can you as a parent answer when your child asks you: “Why me, Mom? Did I do something wrong? Is God mad at me?”

 Kids’ Suffering Brings Tears to Their Eyes and Their Parents’

Kids undergoing chemotherapy are constantly poked with needles and injected with powerful chemicals that destroy their immunity, making them more susceptible to other potentially fatal diseases, including COVID-19. The drugs are so toxic that we would probably not use them if there were any other choice. Cytostatic antibiotics, for instance, are among many chemotherapy drugs that are “cardio toxic” and can damage the heart if used too long.

Watching a child suffer has been called a living nightmare for parents. There’s nothing more agonizing than listening to your child cry “Stop, please, stop!” when the pain gets too much for them to bear. You feel so helpless as you watch them lose their hair, their appetite, and their energy and struggle through pain, nausea, rashes, sores, kidney and bladder problems, anemia, and bleeding. These are all among the long list of side effects kids endure through our current inadequate arsenal of chemo, radiation, and other standard treatments.

Then there is the sadness you feel in trying to comfort a child who feels isolated from their friends and sad as they miss out on doing things other kids can do. Cancers upset family dynamics, as siblings have to step up and help out parents facing exhaustion, and give up part of their childhoods as they wrestle with their own fears about the illness.

Financial Stress and Your Worst Fears

With all that you do to try to comfort your child, you face the added stress of wondering how you’ll be able to pay off massive medical bills that pile up as you are forced to take time off from work to drive, often long distances, for treatments. At the very time you need to be focused on caring for you child, you must wrestle with thoughts like: “I can’t keep missing work….What’s going to happen to my job? How am I going to pay off these thousands of dollars on my credit card?” All the while you struggle to keep up a hopeful and cheerful outlook for your child, while pushing down fears of losing your baby.

For too many families, there is no happy ending — just a never-ending string of days filled with loss, of dreams destroyed and milestones that will never be measured.

“The death of a child is considered the single worst stressor a person can go through,” Deborah Carr, chair of the sociology department at Boston University, says in Fatherly. “Parents and fathers specifically feel responsible for the child’s well-being. And they’re not just losing a person they loved. They’re also losing the years of promise they had looked forward to.”

Dread, Uncertainty and Lifetime Scars

As we applaud the fact that more children are living beyond five years, we can’t overlook the struggles they endure to reach that milestone, or the continued pain and suffering that may await them the rest of their lives.

Long-term side effects (called late effects) include damage to the heart, lungs, brain, nerves, kidneys, thyroid gland, or reproductive organs that can impact growth and development, emotions, thinking, learning, and memory. Adults who experienced childhood cancer have twice the suicide risk as the general population. The impact to mental as well as physical health is substantial.

Kids and teens that have undergone some types of chemotherapy may face higher risks of developing other cancers as they grow up. They often live with anxiety, depression, and fear that the cancer will come back. As survivors of childhood trauma, they may carry hidden scars that never go away.

“Because childhood cancer survivors are living longer, they are having more late effects after cancer treatment,” the National Cancer Institute says. “Survivors may not live as long as people who did not have cancer.”

The most common causes of death in childhood cancer survivors are:

1. The primary cancer comes back.
2. A second (different) primary cancer forms.
3. Heart and lung

When you consider the pain, suffering and agony cancer inflicts on families kids — even those fortunate to survive five or more years — it’s clear that how far we have to go before we can claim victory over this enemy.

We must clear a path to finding cures and treatments that don’t subject survivors to lifelong suffering, and give every child a chance to chase their dreams. To do that, the Bridge To A Cure Foundation proposes a radical change in the way we conduct clinical trials.

The clinical trial process was created for adults — not children. As a result, 50% of medicines used to treat children have been extrapolated from adult data without data to support safe and effective dosing for kids. The performance criteria for clinical trials is also based on adults, and fails to consider the child’s horrific suffering, the emotional strain on parents and siblings, the potential for deep psychological scars, or the debilitating impact of the financial burden.

Children are not small adults, and their bodies’ physiology and chemistry react differently to cancer treatments. We need a new clinical trial protocol tailored to children, and performance standards that protect their quality of life as they and their families go through this journey. Next month, we’ll look at this in more depth.

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.

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.

The Mission of the Bridge to a Cure Foundation is to increase the pace and success of pediatric cancer research. Building a robust national database is essential to making that happen. But it won’t happen without creating an environment of collaboration within and across research institutions.

This blog discusses:

• Why collaboration is important.
• The primary barrier to collaboration within the pediatric cancer research community.
• What needs to be done to fix it.

Why collaboration is important.

• Pediatric cancer is so complex and multifaceted that to expect individual researchers or institutions to have the breadth of knowledge necessary to deliver breakthroughs is unrealistic. To solve the many urgent challenges that individuals have failed to solve on their own, science must be able to harness ideas, people, and resources from across disciplinary and organizational boundaries.
• The building of a robust national pediatric cancer database will require a level of transparency and data sharing our nation has never seen before. It won’t happen unless collaboration is institutionalized throughout the pediatric cancer research community.
• It works. We know one attribute that the most successful companies in the private sector share is a culture of collaboration.
• An extensive study by the National Bureau of Economic Research illustrates the changing nature of scientific work with the need for large numbers of individuals with distinctive expertise to work collaboratively in the solution of a complex scientific problem.
• Collaboration is more than just getting a group of people in a room to work together to solve a problem. Collaboration is a mindset and a way of life, a core value that helps define an organization’s culture. Collaboration is how an organization works to achieve goals and objectives.

Primary barrier to collaboration – reward systems

• The study noted above highlights that while the demands for new, more expansive modes of organization push scientists towards larger collaborative groups, the reward system for science has not necessarily changed as dramatically.
• Reward systems are foundational to the culture within many organizations. Yet reward programs in pediatric cancer research often reinforces a culture of insularity that discourages collaboration. We need to change these systems to inspire collaboration if we are going to start generating breakthroughs in pediatric cancer.
• The reward system in medical research, including pediatric cancer research, generally recognizes behavior that is in conflict with collaboration; rewards and awards tend to go to individuals for breakthroughs. This is true for research institutions, grants issued by foundations, and national recognition programs.

How to fix it

• Pediatric cancer research institutions need to establish reward and recognition programs that inspire and motivate individuals to work collaboratively. Some ways to do this include:

Have team goals and team milestones. Make the team achievements the focus of the reward system.

Don’t ignore the individual. Each team member is still thinking about how their individual performance review will go. Include their individual performance towards collaboration and team goals, not just individual goals, in their reviews.

Keep the team focused on achieving outcomes, but reward acts of collaboration as well, especially if your team is in the early stages of creating a collaborative culture.

• Foundations need to add collaboration as criteria for awarding grants.

Foundations can influence and change culturesollaborative, if they make teamwork and information sharing a requirement for awards.

They need to find ways that allow the evaluation of grant proposals to factor in collaboration – between teams, disciplines, and even companies and institutions that may be considered competitors.

Within the context of collaboration, grant awards must include data sharing and transparency.

• Most annual recognition programs reward individual achievements. This holds true across all organizations, from the Nobel Prize to research foundation awards to the numerous industry association citations presented each year. Collaboration should be made an important criterion for all annual recognition programs.

Making collaboration a priority for the pediatric cancer research community 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.