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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.