Let’s talk about it

Authored by Christopher C. Conway, Chief Philanthropy Officer & Executive Vice President for Strategic Communications

Nearly $60 billion is invested each year in the United States alone in the pursuit of cancer cures. At the Indiana Biosciences Research Institute (IBRI), we are part of an elite cohort of scientific institutions advancing the front lines of drug discovery. As the second leading cause of death worldwide, cancer cannot be ignored—and neither can the urgency to confront it. That urgency is why investment and research continue to grow year after year.

But what about the rarest forms of the disease, which impact the smallest numbers of people? Without the promise of widespread global impacts or commercial incentives, the rare and ultra- rare cancers attract less funding, and that means simply less research is done, less therapies are developed, and there is less hope for cures. Because ultra-rare cancers have extremely small patient populations, it’s also difficult to gather enough clinical data for traditional trials,  or gain regulatory approval using conventional pathways.

Earlier this month, IBRI’s Dr. Lou Stancato VP of Enabling Technologies and Global Leader of IBRI’s Pediatric Rare Disease Platform represented the Indiana Biosciences Research Institute at The Ultra-Rare Cancer Treatment Advancement Program where he talked about long-term sustainability and patient access to ultra-rare cancer therapeutics.

IBRI is part of this effort as The Ultra-Rare Cancer Treatment Advancement Program (ULTRA), a public-private partnership currently in the design phase, led by the Foundation for the National Institutes of Health in collaboration with major U.S. biomedical partners like the National Cancer Institute and the FDA Oncology Center of Excellence.  In science, peer to peer collaborations are critical because advances that might be incremental can be significantly accelerated when information is shared.  Collegial meetings and relationships are necessary, but these professional exchanges are just the starting point for where these conversations need to go.

Yes, scientists are talking about how to confront these challenges, particularly around cases and populations with biological vulnerabilities and high unmet medical need. Particularly around pediatric cancers. The smallest patients, the rarest cancers, the quietest conversations. Our goal is to challenge some of that, simply by amplifying this conversation: talking about it, taking on the hard and sad truth that these cancers happen in small children and have a devastating impact on their lives and families, and we don’t do enough or know enough because the disease  are rare and the patients are very young. It’s “too” sad.

Now I am shining a light on that conversation. Whispering and wishing this was not happening is not a strategy for curing ultra rare cancers. Science is supported when we have the courage to talk about the work, and investigate the whys openly and clearly. Let this be your invitation to offer support, to care about the rare. IBRI’s core mission embraces this work.

Please take a closer look, and, let’s talk about it.