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Mesothelioma Awareness Day: Getting to Know A Different Kind of Rare Disease

26 September 2017   |   AbelsonTaylor

This Tuesday the 26th is Mesothelioma Awareness Day. It’s a meaningful day to me as a healthcare marketer because it is a chance to raise awareness about a rare disease that profoundly impacts people’s lives. And it’s an important day to me personally because mesothelioma took my grandfather many years ago.

Mesothelioma  is a cancer—typically of tissue surrounding the lungs—caused by exposure to asbestos. It is considered a rare disease because only around 3,000 patients are diagnosed in the US each year. And it’s a very challenging diagnosis; median survival is 11 months. There are great resources online where patients and families can learn more about the condition, such as

Mesothelioma isn’t genetic.
So many rare diseases are inherited that we sometimes forget that they aren’t necessarily genetic. Mesothelioma is caused by exposure to asbestos, and so people who work(ed) in certain industries like asbestos mining, ship building, and demolition of old buildings are at higher risk.

It’s a rare disease, but in some communities, it’s a lot less rare.
Across the US, 1 person in 100,000 is diagnosed. But the risk is three times higher in states that have asbestos-related industries (eg, New Jersey, Maine, and Washington) than it is in the states with the lowest incidences.


SOURCE: Henley SA, et al. Mesothelioma incidence in 50 states and the District of Columbia, United States, 2003–2008. Int J Occup Environ Health. 2013;10(1): 1-10. 

Because asbestos exposure often has occurred in the workplace, the rate of incidence is four times higher in men than it is in women (0.41 vs 1.93 of 100,000).  And age matters too—because both risk of cancer increases with age and use of asbestos peaked in the 1970s. Among men over the age of 75, the incidence of mesothelioma is an incredible 17 times higher than in the general US population.

There are reasons to be inspired.
My grandfather was at the intersection of these risk factors: a guy who’d reached a certain age, living in a small town in New Jersey that once housed a company that processed asbestos. When my grandfather was exposed to asbestos, people weren’t aware of its risks. But now we are. Mesothelioma awareness matters, because regulations and precautions that reduce people’s exposure to asbestos today (whether at work or in buildings) can help make mesothelioma an even more rare disease in the future.

And there are other reasons to be inspired, both as a healthcare marketer and as a granddaughter. Advances in care are on the horizon that have the potential to positively impact patient outcomes someday…not only in mesothelioma, but in many other life-threatening rare diseases where treatment options are limited.

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About the Author

For 35 years, AbelsonTaylor has specialized in telling stories that focus on health and wellness decisions by uncovering the emotional side of the science and digging into the data to tell a human story.