The MCA BlogConnecting with others one story at a time
Advocate and 11-year mesothelioma survivor Heather Von St. James has had a lot of great opportunities to tell her story and raise awareness for mesothelioma and asbestos. Through blogs, opinion pieces, collaborations with organizations like Greenpeace, and even in-person meetings with members of Congress, she has truly made such a difference in the community.
Recently, Von St. James was featured in the largest cancer-focused consumer publication in the United States. CURE magazine interviewed her for its July issue which focused on rare cancers. The magazine prides itself on being the “indispensable guide to every stage of the cancer experience.” Any cancer patient, survivor, or caregiver can receive a free subscription to the magazine. It can be a helpful resource to anyone touched by cancer in some way, as the topics range from advocacy, treatment news, and any supportive care issues like long-term effects from treatment.
Raising Awareness for Mesothelioma
Von St. James works hard to share her story with as many people as she can in the hopes of bringing awareness to both this rare disease and the deadly toxin that causes it.
She realizes there are many misconceptions around the disease, largely from the well-known TV commercials about potential lawsuits for those exposed to asbestos. Too many people have only heard about the disease in this way, and don’t take it seriously enough. Von St. James faces people thinking she’s rich from having mesothelioma. Or they think asbestos is no longer a concern and only impacts those who worked with the toxin decades ago. Many others don’t even realize asbestos is still not banned in the United States.
While asbestos is no longer a prominent industry in the country and only the chlor-alkali industry still relies on asbestos imports today, the toxin is still a big problem. It was used heavily in construction, automotive parts, on ships, and countless other products for decades. That means any older uses of the product can break down and show their age over time. Damaged asbestos can lead to fibers becoming airborne, and thus cause mesothelioma or other asbestos-related diseases years later. So even though those who worked with asbestos products in the past have a higher risk of developing these diseases, people are still at risk of exposure today.
These misconceptions and poor overall awareness help fuel Von St. James’ desire to keep raising awareness and educating people on asbestos and mesothelioma. With her story and collaborations in publications like CURE, she works to help people realize the truth about the disease, help educate about prevention, and support the mesothelioma community.
Bringing Attention to Rare Cancers
CURE’s issue highlighting rare cancers and some recent research for these cancers is so important to patients and their families facing these diagnoses. So many in the rare cancer community feel overlooked. An estimated 6 people per 100,000 are diagnosed with a rare cancer each year, which is about 20% of all cancer diagnoses in the United States. In comparison, breast and prostate cancer (the two most common among women and men) are diagnosed in an estimated 123 people per 100,000 each year.
Though it may not seem like a lot of people are impacted by rare cancers, the National Organization of Rare Diseases estimates 30 million Americans are affected by over 7,000 rare diseases. The American Cancer Society estimated 208,000 new rare cancer cases in the U.S. for 2017 alone. The second most common cancer in the U.S., lung cancer, was estimated to cause 222,500 new cases in 2017.
Despite the growing incidence rate, many rare cancers and diseases still don’t get the attention they deserve. Researchers and various institutions have recognized that rare cancers and diseases don’t get the same scientific consideration or funding as their more common counterparts. This can put those diagnosed at a bigger disadvantage as discoveries on better diagnostic techniques or treatment options may be much more limited.
While survival rates for common cancers have tended to improve over recent years, researchers have seen little progress in survival rates for rare cancers. Mesothelioma, for example, has seen a steady survival rate for decades. From 1973 – 2013, researchers saw the same rate of only about 7% – 9% of patients living five years or more. In another study conducted from 1992 until 2012, however, researchers found survival rates improving slightly for pleural mesothelioma and peritoneal mesothelioma patients.
For mesothelioma, research has had several encouraging advancements in the last decade with emerging treatments and new ways to detect the cancer, but there is still a long way to go. With the support of publications like CURE, numerous cancer and health organizations, and advocates like Von St. James, hopefully more and more attention will be brought to mesothelioma and rare diseases and impact lasting change for these patients and their families.