I’ve participated in multiple Head to the Hill events, both remotely and now in-person. This National Brain Tumor Society event directs patients, care partners and advocates to meet with US Congressional Representatives and Senators to encourage better funding of brain tumor research along with supporting legislation helping brain cancer patients. All of which, I agree with and am happy to assist.
The dimension that sticks in my craw each year is it seems brain cancer research continues to be underfunded. Brain cancer has the highest cancer mortality rate, tumor burden and years of life lost. It affects children, young adults, men, women and elderly. Even with high profile US Senators dying from it, Kennedy and McCain, US funded brain cancer research still garners an insufficient and far from equitable budget.
I understand funding for cancer research is based on a combination of factors. Clearly prevalence, incidence rate, public awareness, politics and fundraising tip the scale. If you ask Chat GPT how to improve a more equitable distribution of funding for brain cancer and other rare diseases, it will respond with a multi-faceted approach with the following strategies:
- Increased awareness and advocacy
- Research prioritization
- Collaboration and networking
- Patient and community involvement
- International cooperation
- Long-term funding commitments
- Outcome focused funding
- Transparent funding processes
The first five suggested strategies are what rare disease advocacy groups have been doing for years with little improvement in research allocations. While research funding has increased and tools at hand have improved, the size of the pie has not increased. Maybe it is because rare disease populations are smaller than the other diseases or maybe it’s diseases like brain cancer has more hurdles with the blood brain barrier or a more heterogeneous nature. Not all brain tumors though are heterogeneous and other cancers can and often do metastasize to the brain.
While I understand Pharma making a business decision regarding rare disease research, I feel Americans should question the allocation of funding by the NIH/ NCI. I think the last three recommended strategies have merit, see below from Chat GPT:
- Long-Term Funding Commitments: Ensuring sustained funding for rare disease research is crucial. Long-term funding commitments can provide stability for research programs and allow for the development of comprehensive research strategies that span multiple years. Governments, philanthropic organizations, and private donors can contribute to establishing sustainable funding mechanisms.
- Outcome-Focused Funding: Shifting towards outcome-focused funding models, such as outcome-based grants or pay-for-performance models, can incentivize researchers to achieve specific milestones or outcomes. This approach encourages efficiency and accountability in research funding and may help prioritize research with the potential for significant impact.
- Transparent Funding Processes: Ensuring transparency in the funding process is essential for fairness and accountability. Clearly defining funding criteria, evaluation processes, and decision-making procedures can help minimize biases and ensure that funding is allocated based on scientific merit and the potential impact of the research.
We now have more advanced data science tools that NIH/ NCI leaders could employ to move the needle to better address diseases with higher mortality rates, tumor burdens and years of life lost. Imagine a breakthrough treatment like Imatinib was for CML, but for children with DIPG who never reach adolescence or mothers/ war vets with Glioblastoma who miss their children growing up, graduating, marrying and bring life into this world. These dimension possibilities are seemingly ignored under the current funding model.
We can do better.