Championing Better Treatments and Outcomes for People with Sarcoma
Brandi Felser, CEO
Last month SFA hosted our annual Stand Up to Sarcoma gala. Once again, it was an impactful event filled with meaningful discussion, opportunities for new connections, and celebrating progress. Like our Race to Cure Sarcoma events, the gala brings together diverse members of the sarcoma community. Listening to the journeys of the patients and survivors and applauding the work of our honorees always connects me to why SFA’s mission is so important.
Our mission is to improve outcomes for people diagnosed and living with sarcoma. Our entire organization is passionate, and laser focused on achieving that mission. A central focus is advancing new and better treatment options. While we are the largest funder of research in the sarcoma community, that is only part of the equation. Not only are clinical trials often treatment for many sarcoma subtypes, but they are also necessary to advance therapy approvals. That’s why SFA works closely with our industry partners to provide the patient voice, share information with patients and facilitate access through our Jordan’s Dream Fund program to advance clinical trials.
In the last several years, we have seen increased options for sarcoma clinical trials and increased FDA approvals, some for rare subtypes. But we have also seen many potential therapies fail. Either because they did not show efficacy or because of barriers rare cancers encounter.
We appreciate the investment from industry in a rare cancer like sarcoma and we encourage more. But the reality is, the rarity of sarcoma poses challenges other cancers do not face and industry investment alone will not fix that. Aside from the challenges associated with traveling to sarcoma centers for expert treatment, a limited number of trials, and open trials have limited sites. Current regulatory processes create barriers to FDA approvals and industry investment.
There is currently no single effective approval pathway for rare cancers like sarcoma. Realizing better and less toxic therapy options must include working closely with legislators and regulatory bodies to develop and implement fit for purpose approval pathways, recognizing that more than one approach may be needed. We, the sarcoma community, must have a voice in the creation of these processes. SFA is leading the way in ensuring our voice is amplified in the places where decisions are being made. Our Sarcoma Advocacy Day is one part of ensuring our voices are represented. We also work behind the scenes with other organizations, policy makers, and public policy experts to insert the voice of the sarcoma community, so we are not left behind.
Earlier this year, I participated in a roundtable that produced a whitepaper with recommendations to lawmakers on how we can improve the regulatory process for rare cancers like sarcoma. This paper has been provided to our lawmakers on capitol hill with ongoing discussions about how we can affect necessary changes. We recently submitted formal comments to the FDA in response to their draft guidance to industry on Approaches to Assessment of Overall Survival in Oncology Clinical Trials. Our position is clear; this guidance, if not framed with rare cancers, like sarcoma, in mind, could significantly impact the potential for new sarcoma treatments to be developed It is necessary that the sarcoma, and rare cancer, voice is included.
As the largest sarcoma organization representing all subtypes of sarcoma, we understand the strategies necessary to improve outcomes. We will not stop until there are better, less toxic, and more accessible treatments for every person diagnosed with sarcoma. Our mission is clear, and we remain fully committed to making meaningful progress.