From only being able to choose between surgery and radiation as treatment options in 1947 to reaching the milestone approval of the first cancer-specific gene therapy just seven decades later, it’s undeniable that cancer research and treatment have progressed significantly over this short period of time. But as it turns out, only the cancers that have been more extensively characterized have reaped the benefits of this scientific progress. Because research funding for studying cancers and developing treatments is unevenly distributed across cancers, patients with rare cancers have seen minimal progress compared to patients with more common cancers.
According to an editorial published 2017 in the British Journal of Cancer, one out of four cancer patients can’t make full use of the developments in science due to the manner in which funding is allocated to the rare forms of the disease they suffer from. This problem itself is wildly ironic. Generally, if a disease is classified as ‘widespread,’ it’s unfavorable. Though in this contradictory scenario, the lower the prevalence of a cancer, the less research funding it sees, meaning those suffering from rare cancers are at an incredible disadvantage and haven’t exactly reaped the benefits of the last 100 years of cancer advances.
This disparity in funding and research between rare and common cancers is evident from the National Cancer Institute (NCI) funding. A study conducted by researchers at California State University Long Beach in 2012 looked into the funding levels for a variety of different cancers, based on the direct impact of the diseases on patient lives. This impact, or “burden” as the researchers dubbed it, was investigated in terms of a number of different metrics, including years of life lost (YLL), which takes into account the age that people are killed and weighs that against the severity of the disease. They found that when NCI funding relative to YLL was calculated as a ratio, more common cancers like breast, prostate and leukemia were categorized as “overfunded” (ratios > 1). On the other hand, those cancers that are considered relatively rare were identified as “underfunded” (ratios < 1), and included types like stomach, oral and uterine.
While this blatant inequality in resource allocation for cancer patients has been established in the scientific literature, there are widely different explanations as to why it persists. Manuel Salto-Tellez, a chair and professor of molecular pathology at Queen’s University Belfast, identified what he believes is the main reason for this large funding gap. Referring to the paper he co-authored titled ‘Rare cancers: the greatest inequality in cancer research and oncology treatment,’ he noted, “Rare cancers research standards are difficult to meet for the individual researchers because of the lack of critical mass for a single institution to find.” In other words, proper funding for rare cancer is challenging to secure because of inadequate patient samples and a lack of supporting clinical trials. Despite this, rare cancer research proposals and clinical trial designs are still held to the same standards as more common cancers, resulting in the significant funding gap. This means that recruiting a sizable clinical trial is still a requirement for investigating a disease with minimal diagnosed patients, something near impossible for researchers to achieve.
When asked what could help remedy the situation and get more research off the ground for rare cancers, Salto-Tellez emphasized modifying how these proposals and trials are evaluated. This could be done by “protecting some funding for [these] neglected areas of science,” and purposefully designating funds to the cancers that lack them.
For his part, Salto-Tellez hopes to close the gap between rare and common cancers by personally “encouraging donors to invest in this area,” he says, while simultaneously conducting his own research “according to appropriate standards of quality and opportunity.” With this, he hopes rare cancers can finally begin to profit from the scientific advancements in the field, thereby stepping out of the funding shadow cast by the well-understood and common cancers.
Image: “A comparison of cancer burden and research spending reveals discrepancies in the distribution of research funding,” BMC Public Health, 2012.