Closing Funding and Specialty Care Gaps in Soft Tissue Sarcoma: Vicki Keedy, MD

Young adults with sarcoma face challenges that extend well beyond treatment, and closing gaps in research funding and specialty care could improve outcomes for this population and beyond, according to Vicki Keedy, MD, MSCI, clinical director of the Sarcoma Program at Vanderbilt-Ingram Cancer Center.

Why Young Adults With Sarcoma Have Unique Needs

Keedy notes that this population often sits at the financial and caregiving center of their families. Many are primary income earners and the source of their household's insurance, so months of therapy that keep them from working can jeopardize both. Others are caring for young children or aging parents, placing them, as she puts it, on both ends of the care spectrum. These realities, she says, make the practical and economic burdens of a sarcoma diagnosis distinct from those faced by older patients.

Where Research Funding Falls Short

Keedy points to basic research as an avenue to help the field advance. Much of sarcoma's progress has come from repurposing drugs approved for other cancers, but true advances, she argues, begin at the bench. Funding is needed for the cell lines, mouse models, and other preclinical tools that do not yet exist for the roughly 80 to 100 distinct cancers grouped under sarcoma. Just as important is supporting junior investigators who have little incentive to enter a field defined by small patient numbers and thin funding mechanisms. 

How Specialty Centers Could Change US Outcomes

Keedy praises the European model, in which several countries designate sarcoma specialty centers and route patients there at diagnosis. Robust data show that when a patient's first therapy is delivered at a specialty center, outcomes are better. In the US, guidelines recommend a specialty-center consultation, but Keedy says that is not happening for many patients.

She traces part of the problem to delayed diagnosis. Because sarcomas often strike young people, clinicians may attribute symptoms to benign causes, and surgeries are sometimes performed without a biopsy or proper workup. Educating surgical and primary care colleagues about what constitutes a red-flag mass, she argues, is the first step, followed by directing patients to specialty centers early. With 80 to 100 subtypes, guidelines cannot dictate care for every case, leaving clinicians reliant on experience and anecdotal data, further underscoring the need to enroll patients in trials that can speed drug approvals.