Following a stage 4 prostate cancer diagnosis during his final year at the University of Utah, Joseph Mutalwa is traveling to Washington to urge lawmakers to increase research funding and advance the Clinical Trial Modernization Act, aiming to expand treatment access for patients nationwide.
What began as persistent discomfort in the lower back quickly upended the academic and personal trajectory of Joseph Mutalwa. I was thinking that it was something that was going to go away. The next day, I had pain in my arms,
he said, noting that his symptoms began in January 2025 during his final year at the University of Utah. He soon encountered symptoms that rapidly escalated across his body, reaching his legs while accompanied by significant weight loss, difficulty walking, and severe shortness of breath.
Following months of doctor visits, a bone marrow test confirmed a severe reality during his final year at the University of Utah. They told me news which I didn't even want to hear: 'Joseph, you have stage 4 prostate cancer,'
Mutalwa said. “I broke down.” The disease had already spread to his bones.
Every day, it was pain to me. I couldn’t sleep.
The physical toll required a nine-day hospital stay that forced him to miss his college finals while dealing with intense, sleep-disrupting pain. Even with ongoing treatment and a long list of medications, Mutalwa returned to school to complete his bachelor’s degree in international studies at the University of Utah and is now pursuing a master’s degree in financial management through Boston University.
Transitioning From Standard Treatment to Clinical Trials
Receiving care as a patient at Utah Cancer Specialists, Mutalwa eventually reached a clinical juncture where standard medical interventions failed to produce the desired clinical progress. That threshold led him to explore advanced investigative therapies.
I was thinking that it was something that was going to go away.
He began participating in a clinical trial, a step that provided renewed therapeutic options. After previously meeting with Utah Governor Spencer Cox in May, Mutalwa shifted his efforts toward national advocacy.
Advocacy in Washington and the Clinical Trial Modernization Act
Traveling to the nation’s capital, Mutalwa participates in the annual Leadership Summit and Lobby Day organized by the American Cancer Society Cancer Action Network. The national gathering brings together more than 700 patients, survivors, and advocates.
During meetings with members of Utah’s congressional delegation, the advocacy agenda centers on pressing federal legislators to elevate funding levels for cancer research. Alongside increased appropriations, advocates are pushing for the passage of the Clinical Trial Modernization Act.
The proposed legislative framework aims to dismantle persistent financial, structural, and geographic roadblocks that frequently block patients from enrolling in potentially life-extending studies.
They told me news which I didn't even want to hear: 'Joseph, you have stage 4 prostate cancer.'
Broader Landscapes in Oncology Research and Trial Access
Mutalwa’s personal push arrives amid wider developments across the national oncology sector. Federal agencies, research centers, and advocacy groups continue to grapple with persistent disparities in clinical trial availability and patient access across different regions of the country. Disparities in trial infrastructure often create a systemic misalignment between local disease burdens and the actual availability of investigative therapies.
At the same time, specialized research centers across the United States continue working to establish clearer comparative evidence for complex oncology care. Major institutions regularly secure dedicated funding, such as a $15 million award from the Patient-Centered Outcomes Research Institute (PCORI), to study whether intensive interventions like stem cell transplantation provide definitive survival benefits over modern non-transplant therapies for vulnerable patient populations facing aggressive blood cancers like acute myeloid leukemia (AML). As principal investigator Mohamed Sorror, MD, MSc, a professor in Fred Hutch Cancer Center’s Clinical Research Division and an associate professor of medicine at University of Washington School of Medicine, noted regarding older adults facing such decisions, For decades, patients, families and physicians have had to make these life-changing decisions without sufficiently strong comparative evidence.
Sorror added that while transplantation may offer the best chance of long-term disease control for some patients, it also carries substantial short-term risks and long-term burdens,
whereas modern non-transplant therapies may provide a better balance for others.
Personal Resolve and the Path Ahead
For Mutalwa, the journey through advanced disease and demanding academic programs has cemented a clear sense of purpose regarding systemic health reform. He emphasizes that federal research investments represent real individuals and families navigating severe health crises.
Every day, it was pain to me. I couldn’t sleep.
As congressional leaders review federal health appropriations and pending legislative proposals, advocates from across the country continue pressing for structural changes designed to make experimental therapies accessible to any patient who needs them, regardless of geographic location or personal financial resources.
