A Rare Cancer in Need of Congressional Recognition

Sarcoma has long been under-represented in the research landscape, in part because it represents just 1 percent of all cancers. There are more than 50 subtypes of sarcoma, making it challenging for researchers to harness research breakthroughs because of the unique complexity of each subtype, which may have unique biomarkers, pathways, proteins, molecular and genomic make-up.  

Leiomyosarcoma represent between 13 percent to 20 percent of all sarcomas, with four subtypes within the Leiomyosarcoma subtype itself (vascular, uterine, bone, muscle).  Leiomyosarcoma represents an even more challenging research effort because of its complexity, and difference from other sarcoma subtypes.

While immunotherapies have been somewhat successful in some of the subtypes of sarcoma, Leiomyosarcoma so far has been difficult targets for immunotherapies.

Most people are familiar with common cancers. They are well known through literature, television ads, designated annual observance, and events connected to the date. Raising awareness is critical to not only improving the diagnosis of sarcomas, but also driving research forward. In an effort shine a spotlight on sarcoma and leiomyosarcoma, advocates are calling for a National Sarcoma Awareness Month and a Leiomyosarcoma Awareness Day.

In 2016, the National Leiomyosarcoma Foundation working with Senator Deborah Stabenow, D-Michigan, won passage of legislation to create National Leiomyosarcoma Day on July 15, 2016.  She introduced the Resolution again on June 28, 2017, but without bi-partisan co-sponsorship, the bill could not continue forward for Congressional approval.

The National Leiomyosarcoma Foundation in 2018 is pushing not only for National Leiomyosarcoma Day, but for the entire Sarcoma community to be represented for a National Sarcoma Awareness Month in July.

A National Awareness Month for Sarcoma and a National Awareness Day for leiomyosarcoma is an opportunity to bring attention to one of the very rare cancers that needs more research. The average age used for diagnosis of leiomyosarcoma has fallen to the 40s from 58.5 years for diagnosis of leiomyosarcoma. It is now affecting a younger population.  There is even a child, age 8 that is a leiomyosarcoma patient.

Please add your voice in calling on Congress to recognize these diseases. You can do so by clicking here to reach your representative. Sarcoma knows no age boundaries. It affects people of all ages. Just because a cancer is rare cancer doesn’t mean it shouldn’t have a voice that is heard in the cancer echo system. 

Annie Achee is president, medical research liaison of the National Leiomyosarcoma Foundation

February 5, 2018