Cholangiocarcinoma, mesothelioma, esophageal cancer — these are just some examples of the cancers that lack funding, research and specific treatment protocols because they are considered ‘rare.’ But what does ‘rare’ really mean?
Look at Cholangiocarcinoma as an example. In 2008, in the United States alone, approximately 4,600 people were diagnosed with this disease. That’s enough to fill both the Fillmore East in San Francisco (seats 1,199) and the Orpheum Theater in Boston (seats 2,766).
And the band plays on…
Every five years the number of people newly diagnosed with cholangiocarcinoma easily maxes out the 20,000 seats of Madison Square Garden. In fact, those turned away at the Garden could head over to Broadway and overrun the Beacon Theater’s 2,844 seats. These numbers continue to add up year after year.
All cancers, no matter how rare, have an immeasurable impact. When someone you love has cancer, the statistics that dictate funding do not matter to you. You want to fight the disease. When Paul was diagnosed with cholangiocarcinoma at the age of 38, all that mattered to us was finding a way to help him live. He lived for two years with the disease- it was not enough.
More than half of all cancers are considered orphan cancers. These diseases aren’t so rare after all. And, the people who are diagnosed deserve a chance to fight them. Awareness, research, and funding are needed to give them that chance.