Bladder Cancer in the Gap Between Rare and Common
Bladder cancer is expected to be the sixth most common cancer in the United States in 2019. Yet, when my first husband was diagnosed with it, neither of us had ever heard of it.
Bladder cancer statistics
And therein lies the status of bladder cancer: it is common enough to be the sixth most common — over half a million Americans living with it, about 81,000 expected to be diagnosed with it and about 17,000 expected to die from it in 2019 — but it is far less common than some other cancers.1
The National Cancer Institute (NCI) estimates that new cancer cases in 2019 will include the following number of each cancer type: (1) breast (271,000) (2) lung (228,000) (3) prostate (175,000) (4) colorectal (146,000) (5) melanoma (96,000) and (6) bladder (81,000).1
As these estimates show, there are more than three times as many cases of breast cancer than bladder cancer, nearly three times as many cases of lung cancer and more than double the number of prostate cancer cases.
Funding for research to develop bladder cancer treatments
But if you have bladder cancer, you really don’t care how the number of cases compares to other cancers. You care that there are treatments available and ongoing research towards a potential cure.
And herein lies a big problem for bladder cancer patients: the lack of broad public knowledge about bladder cancer has resulted in less research funding when compared to other cancers.
NCI-funded bladder cancer research totaled about $36 million in fiscal year 2017 (the most recent available data on the NCI website).2
Bladder cancer receives far less funding on a per-new-case basis
When I first reviewed data on NCI’s funded research portfolio for bladder cancer research versus other cancers, I wondered if maybe the funding was more similar if you considered it on a per-case basis. But, no, even when analyzed on a per-new-case basis, bladder cancer as a topic receives far less funding than these other cancers.
If you take NCI’s spending by cancer type for FY 2017 divided by the American Cancer Society’s number of new cases for FY 2017, this reveals that even when spending is considered on a per-new-case-basis, bladder cancer receives significantly less funding as shown in the table.3
Table 1. Research spending per cancer type for FY 2017
|Cancer Type||Total NCI Portfolio (in millions)||Total New Cases||Per Cancer Case NCI Spending|
Source: (1) NCI Funded Research Portfolio FY 2017 (2) American Cancer Society Cancer Facts & Figures 2017
NCI’s bladder cancer research portfolio was about $456 per-new-case of bladder cancer in FY 2017. Melanoma, a cancer with slightly more new cases in FY 2017, received almost four times as much on a per-case basis.
The real-life impact of a lack of funding
The real-life impact of this was how I felt in the summer of 2013 when I learned that there had been no new FDA-approved treatment options for metastatic cancer since 1978. I was shocked. I hadn’t really paid attention to cancer as a topic, but it seemed as though we had heard in the news for years that the country was “winning the war” on cancer and that new breakthroughs were constantly discovered.
I realized that this was true for some cancers but not for bladder cancer.
Another statement that surprised and shocked me was when I asked our primary care doctor why I was having so much trouble finding information online about metastatic bladder cancer. Her response was: “Researchers can’t build a career on bladder cancer.”
That struck me as incredibly cynical. I realized that if you’re going to be unlucky enough to get cancer, you better hope to be lucky enough to get once on which researchers can build a career.
Bladder cancer needs to be as well-known as other cancers
These NCI numbers in the context of the number of new cases show us why it has historically been difficult for researchers to build careers on bladder cancer. That is slowly starting to change, but these numbers also remind us why it’s important to advocate for research and to tell your story. Bladder cancer needs to be as well known as prostate, lung, or breast cancer.