Sarcomas are a rare type of cancer growing in the connective tissue, i.e., cells connecting or supporting other kinds of tissues in the body. We spoke with CEO Brandi Felser of The Sarcoma Foundation of America (SFA) about the foundation, the everyday challenges that sarcoma patients face and Sarcoma Awareness Month.
First of all, could you please tell us about The Sarcoma Foundation of America (SFA) as such, its aims, and your role within the foundation?
The three pillars of the Sarcoma Foundation of America (SFA) are: research, education and advocacy.
- Research: SFA is an advocate for increased research to find new and better therapies with which to treat patients with sarcoma. As the leading funder of research in the sarcoma community, the organization raises money to privately fund grants for sarcoma researchers. Since its inception in 2000, the Sarcoma Foundation of America has invested over USD 13 million in research; including over 200 sarcoma research grants, eight American Society of Clinical Oncologists (ASCO) Young Investigator Awards, two Advanced Clinical Research Awards (ASCO) Conquer Cancer Foundation Awards, and two ASCO Conquer Cancer Foundation Career Development Awards.
- Advocacy: SFA serves as the voice for the sarcoma community by educating legislators, federal and state agency officials, health and research communities, and the general public about the need for additional research and new therapies. SFA advocates for increased research funding for sarcoma both from the public and private sectors and works with government, for-profit and non-profit cancer organizations, and the biopharmaceutical industry to improve the level of awareness, interest, and investment in research for sarcoma.
- Education: An educated and empowered community is key in efforts to bring change to the sarcoma landscape. Education not only aids patients and caregivers in advocating for their own care, but also helps to build a group of advocates who can work on behalf of others to raise awareness and influence research and drug development activities. SFA’s advocate education and engagement initiatives include thought-provoking in-person education sessions with esteemed speakers, interactive webinars, advocate/researcher networking at national meetings, and briefings on the latest developments in sarcoma research. SFA’s education program is a comprehensive program to provide patients with information and tools needed to be a leader in the sarcoma advocacy community.
The Race to Cure Sarcoma
SFA also hosts the Race to Cure Sarcoma event series, the premier run/walk series in the United States focused on raising awareness and research funds for sarcoma. The Race to Cure Sarcoma is made up of family-friendly run/walks held in cities across the nation. More than USD 1 million each year is raised for sarcoma research through the Race to Cure Sarcoma.
Why is sarcoma still considered to be the “forgotten cancer”?
Sarcoma has made significant progress over the last several years in terms of more research and therapies. However, sarcoma still suffers from inadequate investments in research funding to advance drug development, limited awareness about the disease, and limited sarcoma centers and specialists. All of these create challenges for sarcoma patients. Moreover, the rarity of the disease makes it difficult to generate research investment and awareness.
What are the everyday challenges that sarcoma patients face?
Treatment options are limited. Once a patient is diagnosed, getting treatment specific to their subtype is challenging. Sarcoma is curable by surgery (approximately 20% of the time), or by surgery with chemotherapy and/or radiation (another 30%), but about 50% of the time they are totally resistant to all of these approaches. For many subtypes, there is no therapy approved by the Food and Drug Administration (FDA). Patients suffer from limited treatment options and limited sarcoma centers to access treatment. The journey to diagnosis can be long, often taking years.
What can you tell us about pediatric sarcoma and the (unmet) needs of the young patients (and their families)?
Although still rare, sarcoma represents 15–20% of pediatric solid tumors with the most common tumor type being rhabdomyosarcoma. Risk factors for pediatric sarcoma include inherited disorders such as Li-Fraumeni syndrome, RB1 gene changes, and Neurofibromatosis type 1 (NF1), and past treatment with radiation therapy. Similar to adult sarcomas, treatment options are limited for pediatric patients. In addition, survivors of pediatric sarcoma face the challenge of lifelong health problems due to the cancer treatments that seriously affect their quality of life. These can include organ, tissue, and body function; growth and development; social and psychological adjustment; and second cancers.
July was Sarcoma Awareness Month: How did you perceive the awareness event, and what can we do after the actual awareness month?
Sarcoma Awareness Month is an important time for the community to come together to honor patients and survivors, remember the loved ones lost, and raise awareness about sarcoma. The sarcoma community wore yellow, engaged in educational activities, and shared stories about patient journeys and our loved ones. Thousands of members of the sarcoma community joined SFA for our National Virtual Race to Cure Sarcoma to help raise much needed funds for sarcoma research. The combined efforts of the sarcoma community were effective in educating the world about sarcoma and no doubt lifted the voice of sarcoma patients and survivors.
Our work to create change for the sarcoma community, however, cannot end there. The month of July, Sarcoma Awareness Month, is a time for the community to join forces, to unite and raise awareness about the disease. Importantly, it is also a time to unite and work toward more and better treatment options for all sarcoma patients.
But not just this month. Every month.
How and to which extent has the COVID-19 pandemic changed your work as well as the lives of sarcoma patients?
How we work as a team, in terms of not being in the office, has changed, but outside of that, mostly our advocacy and public policy focus. The pandemic made all of us re-think how we approach treating patients. Especially in sarcoma, it is important for sarcoma patients to be treated at a sarcoma center, which often means travel to that location. That became nearly impossible during the pandemic. Medical professionals and patients were forced to find ways to care for patients, and receive care, differently. This worked well in many aspects because the sarcoma community is already a very collaborative group. But it did crystalize that some of these changes should continue after the pandemic such as telemedicine, non-priority (scans, blood tests, even chemotherapy) being administered at a more local institution while being supervised by a medical professional who might be far away. We would like to see some of these changes stick. It can tremendously benefit sarcoma patients.
In terms of research funding and education, we are able to have those discussions and sessions via webinar so that actually made things easier for us and helped us to reach more people.
Many thanks for your insights!