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When I had my first child, my friends told me it was like having my own heart walking around outside of my body, and they were right. The thought of that heart stopping beating was the worst possible thought, yet for many parents, it is a reality they contend with every day.
Kasey Altman, 25, had been a college athlete and was just hired for her dream job at Google when the diagnosis came. It was stage four cancer. Altman went into action and left those of us who knew her in awe. In the midst of grueling treatments for alveolar rhabdomyosarcoma (ARMS), which is classified as a pediatric cancer, she became a passionate and compelling advocate for investments in childhood cancer research. She raised funds for her own treatment, launched a podcast featuring people who turned adversity into action, and took every opportunity she could to raise awareness.
Altman attended the Milken Institute Global Conference in May (after 10 months of chemotherapy and clinical trials) to speak about the business case for patient engagement. She laid bare the story of her cancer — and raised a point that for me, as a mother of two small children, was especially jarring. She pointed out that cancers affecting children are considered rare — and that no attention or quantification is put onto the devastating loss of productivity, creativity and potential of the children or the families affected.
We learned that Altman passed away on July 4, barely two months after her address to the Milken Institute. This bright, talented, young woman with a whole future ahead of her had her life stolen away from a disease that because of its rarity, is underfunded, and therefore not studied.
Pediatric research only accounts for $4 billion of National Institutes of Health funding. That is about 10% of its total budget. Of that, pediatric cancer research funding is only about 4%. If children are the future, why then, is so little funding going to keep future generations healthy and well?
Investment in pediatric research can be a tough case to make. Childhood disease is comparatively rare. The research infrastructure for children is weaker compared to other age groups, and diseases don’t behave the same way in children as they do in adults. You’ll often hear researchers say, “Children aren’t just miniature adults.” Childhood biology isn’t well understood — in part because it hasn’t been studied enough.
This is where philanthropy comes in. Philanthropy has filled voids in pediatric research funding, and the Center for Strategic Philanthropy (CSP) has played a role in directing some of that capital toward creating a healthier future for children everywhere. For donors looking to invest in pediatric healthcare, there are some options to have a meaningful impact, and other philanthropists to learn from.
- Invest in prevention - Investment in prevention, early detection, and child wellness sets children up for better health experiences and outcomes and philanthropy can play an important role. For example, it was fierce advocacy by the Cystic Fibrosis Foundation that ultimately resulted in the wide adoption of newborn screening for CF that has led to extended and improved lives. Recently, CSP worked with the Helmsley Charitable Trust to develop a Roadmap for the Implementation of Type 1 Diabetes (T1D) Autoantibody Screening in the general population. While there is no cure for the disease, implementing this screen as part of pediatric preventive care can prevent serious complications at the time of symptom onset and identify participants for T1D care and research. The roadmap outlines the preventive care landscape, common barriers and practical solutions for getting preventive care interventions through the rigorous system of regulations.
- Improve care now - There is also ample opportunity to optimize existing treatment regimens to improve health outcomes using shared clinical and outcomes data. For example, the Starzl Network for Excellence in Pediatric Transplantation is a learning health network of 10 transplantation centers in the U.S. and Canada, managed by Children’s Hospital of Pittsburgh, that was launched with philanthropic support from Citrone 33. With philanthropy, the Starzl network has enabled the sharing of protocols and data to identify variations in care, promote adoption of best practices, and ultimately improve clinical outcomes, particularly with regards to anticoagulation and immunosuppression practices in pediatric transplantation. These types of learning networks have proven to be beneficial across therapeutic areas – from inflammatory bowel disease to cardiology – and pediatric health more broadly.
- Fund breakthrough research - Most pediatric disease is rare, so there is less incentive to pour funds into research that will see little financial return. Philanthropy, more than any other funding mechanism, has the ability and the opportunity to pull together multidisciplinary teams to work on solutions that wouldn’t otherwise be funded. You can learn more about how CSP worked with the Gilbert Foundation to pave the way for gene therapies with the goal of addressing the underlying genetic abnormalities that could lead to a cure, not just symptom management, for neurofibromatosis type 1.
It’s time to flip the script on the "rarity" of childhood disease. Anyone who knows a family with a child who has a chronic illness knows the devastating impact. There is the tragedy of lives either cut short, and the overall stress of a life swallowed up by time in hospitals or enduring treatments that feel like a crapshoot at best.
These families know that it doesn’t matter how rare their child's condition might be. Collectively, as Altman pointed out so compellingly before her passing, the economic costs, the opportunity lost, the potential lost add up to nearly $1 trillion. There is so much potential for philanthropy to be the force that creates pathways to a solution for so much of this loss.