Letter: Help find a cure
July marks the beginning of Sarcoma Awareness Month. As you may know, I have been fighting CIC-DUX4 Ewing’s Like Sarcoma since September of 2017. Most people don’t even know what a sarcoma cancer is — much less the types of treatments these patients endure for years of there life. A sarcoma is a rare cancer in adults (1% of all adult cancers) but very prevalent in children (about 20% of all childhood cancers.) There are dozens of different subtypes because it arises from tissue structures such as nerves, muscles, joints, fat, blood vessels, and most often bones. The most frequent location it arises is the limbs because this is where most of our bodies connective tissue resides. My sarcoma originated in my left calf muscle called the soleus muscle.
The most common treatment options for sarcoma are chemotherapy, surgery, and radiation. Sarcoma is sometimes curable by surgery (about 20% of the time), or by surgery with chemotherapy and/or radiation (another 50-55%), but about half the time they are totally resistant to all of these approaches — thus the extreme need for new therapeutic approaches. At any one time, more than 50,000 patients and their families are struggling with sarcoma. More than 16,000 new cases are diagnosed each year and nearly 7,000 people die each year from sarcoma in the United States.
We need new treatment options. Seven kids are dying every day in the United States due to outdated treatment options. Forty-three kids will be diagnosed with childhood cancer today, tomorrow, and the next day after that. It’s even more disheartening to learn that large pharmaceutical companies do not invest in childhood cancer research because they do not see these kids as a profitable venture. Instead, they focus on adult cancers, and as a result, there are on average 12 new drugs that are FDA approved each year to combat adult cancer. By contrast, only eight drugs have been FDA approved in total since 1978.
The disease-free survival rate for rhabdomyosarcoma and Ewing’s sarcoma has remained unchanged for 47 years. Think of the progress that has been made in so many areas of medicine during that time, and yet the treatment of childhood cancer remains virtually the same as it was when my parents were kids. If my dad had been diagnosed with my type of cancer when he was 13 years old, he would have been treated with the same drugs I was treated with — and he’s 50 years old. Can you imagine if the treatment for heart disease, diabetes, AIDS, and adult cancers were still treated the same as they were 47 years ago? We need a cure! If you would like to help my friend Megan Bugg raise $180,000 to bring a drug to a clinical trial that could treat both relapsed Ewings Sarcoma and Alveolar Rhabdomyosarcoma, please click here.
All statistics and facts about sarcoma cancers are from the Sarcoma Foundation of America.