Joseph Mutalwa, a 2025 University of Utah graduate diagnosed with stage 4 prostate cancer, is traveling to Washington to urge members of Congress to increase medical research funding and expand clinical trial access, highlighting geographic and financial barriers faced by patients.
What started as persistent lower back discomfort during his final semester quickly unraveled a life-changing medical reality for Joseph Mutalwa. Originally from Uganda, Mutalwa was navigating his final year at the University of Utah in January 2025 when the symptoms began. Within days, the discomfort spread to his arms and legs, accompanied by severe weight loss, shortness of breath, and trouble walking.
The cancer had already spread directly to his bones, keeping him hospitalized for nine days and forcing him to miss his college final exams. Despite chronic pain that made sleep nearly impossible, Mutalwa pushed forward academically. He completed his bachelor’s degree in international studies at the University of Utah and is currently pursuing a master’s degree in financial management through Boston University.
Advocating for the Clinical Trial Modernization Act in Washington
After finding that standard medical treatments were failing to curb his disease progression, Mutalwa enrolled in a clinical trial in Salt Lake City this month. Speaking about his therapeutic options, Mutalwa noted that the clinical trials provided him with more hope and treatment alternatives when conventional care fell short.
Following a meeting with Utah Gov. Spencer Cox in May, Mutalwa is taking his advocacy to the nation’s capital. He joins more than 700 cancer patients, survivors, and advocates taking part in the American Cancer Society Cancer Action Network’s annual Leadership Summit and Lobby Day. During the summit, he plans to lobby Utah’s congressional delegation for increased federal support for oncology research.
A core focus of his trip is pushing for the passage of the Clinical Trial Modernization Act. The proposed legislation targets structural hurdles such as transportation costs, lodging limitations, and out-of-pocket medical expenses that often lock vulnerable patients out of experimental therapies.
Broader National Landscape in Oncology Research Trials
Mutalwa’s push for improved clinical trial access unfolds amid a wider national landscape of high-stakes developments in cancer research. While individual advocates lobby lawmakers for structural reform, researchers across the country are navigating both major breakthroughs and unexpected trial terminations.
In late-stage research, institutions are tackling aggressive malignancies through large-scale consortiums. For instance, Fred Hutch Cancer Center recently announced it will lead a national clinical trial initiative supported by $15 million from the Patient-Centered Outcomes Research Institute to evaluate treatment strategies for older adults with acute myeloid leukemia. That initiative aims to enroll roughly 800 patients across 18 medical centers.
At the same time, experimental mRNA cancer therapeutics have faced a mix of clinical advances and setbacks. Drugmakers Merck and Moderna reported positive data from a late-stage trial combining a personalized neoantigen vaccine with Keytruda for melanoma patients. Conversely, BioNTech halted a mid-stage trial for its colorectal cancer mRNA vaccine after an independent review committee identified an overall survival numerical imbalance, while AstraZeneca discontinued a late-stage lung cancer trial for volrustomig following a futility recommendation from a data monitoring committee.
For patients like Mutalwa navigating advanced diagnoses, the macro-level shifts in drug development underscore the daily urgency of expanding experimental options. Looking ahead at his own uncertain prognosis, Mutalwa remains focused on utilizing his remaining time to advocate for systemic change.
I can’t control cancer, but I can control the time which I have left to use it for others and patients like me,
Mutalwa said.