Sarcoma Patient Advocacy : Hope and Help

Patient advocacy is the endeavor where laypeople advocate for patients, survivors and caregivers inside the healthcare ecosystem. While healthcare is intrinsically about patient care and outcomes, the complexity of the current healthcare ecosystem often creates many situations where the interests of the various stakeholders are in conflict. This conflict has resulted in the need for patient advocacy. Consider the various stakeholders in the healthcare ecosystem: providers, payers, patients, the government, and the pharmaceutical and medical devices industries. Historically the patients have had the smallest voice but that is not the case anymore. The creation and growth of patient advocacy has increased the importance and impact of the patient voice such that one of the leading issues in some of the most recent US legislation, 21st Century Cures and PDUFA VI, is patient-centric research. The accomplishment of the patient advocacy community in raising the impact and importance of the patient voice is a testament to how a group of people speaking with one voice can change the world for the better.

Patient advocates take on many roles in support of their patient community. These activities range from giving voice to the patient perspective in policy discussions to raising disease awareness with the public to help educate the patients and caregivers about their disease. I believe that one can separate the various activities of patient advocate into two buckets: activities focused on Hope and activities focused on Help. Hope for finding a cure and Help with the patient journey. Hope and Help is my patient advocacy motto.

Typically, patients and caregivers come together to form organizations focused on a particular aspect of the cause. Whether funding research, helping with the cost of treatment, or advocating for policy changes, the patient voice is always stronger and more impactful united than fragmented. Some examples of impactful patient advocate organizations over the years include the American Cancer Society, the Cystic Fibrosis Foundation, the Multiple Myeloma Foundation, St. Baldrick’s, and the Michael J. Fox Foundation. These are just a few of the larger, more recognizable organizations, but the truth is that most patient advocacy groups are much smaller in stature and still fill vitally important roles in addressing unmet needs for their patients and caregivers. Without all of these patient advocacy organizations, the patient journey would be more difficult and lonely for too many patients.

Sarcoma Statistics

Sarcomas are a diverse and relatively rare group of malignant tumors that develop in connective tissue. Sarcomas originate from transformed cells of mesenchymal origin and represent 1% of all cancers. Interestingly, the prevalence in pediatric patients is more significant at 15%. Typically, sarcomas are split into two broad groups: soft-tissue sarcomas and bone sarcomas. Soft-tissue sarcomas form in cartilage, fat, muscle, fibrous tissue, blood vessels, and other connective tissues of the body. Sarcomas are more likely to be found in limbs. Because sarcomas are typical found deep in the body, they tend to be larger tumors at identification.

There are more than 100 subtypes of sarcoma. Historically, sarcoma subtypes are determined by their histology, though as more is learned about the genomics of sarcomas it is expected that subtypes will more represent the genomic fingerprint of the tumor. To date, driver alterations have not typically correlated with histologic subtypes but when they have, such as in gastrointestinal stromal tumors, targeted therapies have had a significant impact on the treatment paradigm and outcomes for those particularly sarcoma patients.

Current estimates suggest that approximately 12,000 cases of soft-tissue sarcoma and 3000 cases of bone sarcomas will be diagnosed in the United States each year with approximately 4700 and 1500 deaths annually from soft-tissue and bone sarcomas, respectively. There are roughly 50,000 patients in the United States that have sarcoma.

The Sarcoma Foundation of America

The Sarcoma Foundation of America was founded by Dr. Mark Thornton, Mrs. Patricia Thornton, and Dr. John Brooks. It was incorporated in Maryland in 2000 and received its 501(c) (3) designation from the United States Internal Revenue Service on June 18, 2001.

The mission of the Sarcoma Foundation of America is to advocate for sarcoma patients by funding research, educating patients about their disease, advocating for legislative and regulatory policy changes to speed the development of new drugs, and increasing public awareness about the disease. Since its humble beginnings, the Sarcoma Foundation of America has attracted thousands of members in all 50 states. The Sarcoma Foundation of America members serve the sarcoma community through grass roots awareness activities to increase communications and activities for sarcoma patients and their families while fundraising for sarcoma research. While it is a small community, the sarcoma community is a very motivated group of patients, caregivers, and survivors that work tirelessly to help all future sarcoma patients.

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