Access to cancer clinical trials is the issue Joseph Mutalwa will take to Capitol Hill after being diagnosed with stage 4 prostate cancer. The University of Utah graduate spent nine days in the hospital before doctors connected his lower-back pain, arm and leg discomfort, shortness of breath, weight loss and difficulty walking to cancer that had spread to his bones. Now he is traveling to Washington, D.C., to urge lawmakers to give patients like him a better chance to enter trials.
Mutalwa, who is originally from Uganda and is a patient at Utah Cancer Specialists, will travel to the nation's capital on Sunday, according to KSL.com. He plans to meet with members of Utah's congressional delegation and attend the American Cancer Society Cancer Action Network's annual Leadership Summit and Lobby Day, which the group says will draw more than 700 cancer patients, survivors and advocates to Washington from September 13 through 16. The gathering will also feature the organization's Lights of Hope ceremony, where more than 25,000 illuminated bags are placed around the Lincoln Memorial Reflecting Pool, according to the American Cancer Society Cancer Action Network.
His symptoms began in January 2025, KSL reports, and eventually forced him to miss his own college finals even as he completed a bachelor's degree in international studies at the University of Utah. He's now pursuing a master's degree in financial management through Boston University while undergoing treatment. Mutalwa told the station that standard treatment was not working as hoped, and that clinical trials became his only remaining option. In May, he met with Gov. Spencer Cox, and this month he began participating in a clinical trial in Salt Lake City, which he said gave him more hope and treatment options, per KSL's reporting.
The Cost Barrier Keeping Patients Out of Trials
Mutalwa said transportation, lodging and medical expenses can be unaffordable for patients trying to access trials far from home, according to the same KSL account. The participation gap has also been discussed in oncology coverage, including Oncology Times. Utah Cancer Specialists’ patient-resources page lists the American Cancer Society’s Road to Recovery program, which provides transportation to and from treatment for people with cancer who do not have a ride or cannot drive themselves. FORCE’s travel-and-lodging assistance page says the American Cancer Society Patient Lodging Program provides overnight accommodations for cancer patients who must travel for outpatient treatment and need lodging assistance.
Utah’s Rural Access Challenge
Utah’s geography can make specialized cancer care and clinical-trial participation harder for patients outside the Salt Lake City area. According to the Utah Department of Health and Human Services, 77% of the state is rural, and rural residents face persistent health-care access barriers. The department also says rural counties have a severe shortage of local specialists, including urologists, forcing some patients to travel long distances and lose wages for care. Research published through PubMed Central identifies limited patient and provider knowledge, complex eligibility requirements, participation expenses and travel difficulty as barriers to cancer clinical-trial enrollment. Those obstacles can affect whether a patient is able to pursue a trial even when one is medically appropriate.
A survey from the American Cancer Society Cancer Action Network found that 89% of cancer patients and survivors said they would be more likely to join a clinical trial outside their local area if sponsors helped pay for or organize travel and lodging, per the organization's research. More than 100 patient advocacy and healthcare organizations, including the Patient Advocate Foundation, the PAN Foundation and the Association of American Cancer Institutes, sent a joint letter to Congress in August 2025 endorsing legislation meant to close that gap, according to The ASCO Post.
What the Clinical Trial Modernization Act Would Do
Mutalwa will advocate for the Clinical Trial Modernization Act while in Washington and will urge increased federal funding for cancer research along with expanded access to clinical trials, KSL reports. The bill was introduced in the House in 2025 and is intended to reduce financial and geographic barriers to clinical-trial participation. Provisions in the legislation would explicitly permit trial sponsors to cover participants' out-of-pocket medical co-pays and non-medical expenses such as travel, parking, food and lodging, while allowing the U.S. Department of Health and Human Services to award grants for community recruitment in underserved areas.
Bone involvement like Mutalwa's is common in advanced cases: roughly 80% to 90% of patients with metastatic prostate cancer develop bone metastases, which frequently cause severe skeletal pain and mobility problems. A study published in Cancer Epidemiology, Biomarkers & Prevention projected that by 2030, approximately 192,500 men in the U.S. will be living with metastatic prostate cancer, up from an estimated 120,400 in 2018. The disease also shows racial disparities.
Turning a Diagnosis Into a Mission
Mutalwa said he cannot control his cancer, but he can control how he uses his remaining time for others, according to KSL's reporting. He plans to keep fighting for other cancer patients even as he continues his own treatment. His trip to Washington, timed to this week's advocacy summit, puts a personal face on a legislative fight that patient groups and lawmakers alike say has been years in the making.
