For the first time in American history cancer incidence is expected to exceed 2 million cases in 2024 and claim more than 600,000 lives.¹ Over 480,000 of these new cases are projected to be urological, with prostate cancer remaining the second deadliest malignancy in men.² The advancement of treatment for these patients, and the potential for cure, rests on the shoulders of medical research. Despite this, less than 1% of government appropriations will go to medical research funding this year.^3,4 Simultaneously, the American public finds itself strikingly divided in its political ideals, and the scientific community the subject of immense scrutiny in the wake of the deadliest pandemic in this nation’s young history. Against this fiery backdrop, the question arises: How can we continue to improve health care and further aid the nearly half a million individuals facing the perilous reality of urological cancer in 2024? The answer hinges on commitment to medical research, which in turn relies upon robust patient advocacy.

Understanding the historical context of research funding in the United States, and its pivotal relationship with patient advocacy, is essential for its preservation. 1992 was coined the “Year of the Woman” because of the growing sense of urgency amongst the American public regarding the importance of women’s health.^3,5 Advocacy organizations, including the American Cancer Society, the Susan G. Komen Foundation, and the American College of Radiology, were critical in mounting support for this movement by spearheading a monumental lobbying effort for breast cancer research. The result was $400 million in funding for breast cancer in 1992, an increase from $158 million the year prior. Amongst these funds were $25 million appropriated by the Department of Defense, representing what would become the Congressionally Directed Medical Research Program (CDMRP).^3,5 The CDMRP has since developed into the second main avenue of government-funded research in America, and benefits from its unique position within the defense spending budget. It is second only to the NIH in terms of government funds awarded for medical research, and supports studies for the American public as well as its military members.³ The creation of the CDMRP marked a momentous achievement for medical research and cemented the importance of advocacy in the modern era.

The success of the breast cancer movement, and the creation of the CDMRP, demonstrates the astonishing number of individuals and organizations required to obtain funding for medical research. Chief amongst these are Patient Advocacy Organizations (PAOs). Dedicated to the protection and advancement of patient and caregiver interests, PAOs are formal groups that shape the landscape of research by identifying research priorities, advocating for funding, and facilitating collaborations between researchers and affected communities.⁶ Examples in the field of urologic oncology include the Bladder Cancer Advocacy Network, the Kidney Cancer Association, and the Prostate Care Foundation. The results of advocacy efforts by these organizations, and others, are demonstrated by the $587 million in NIH funding for urological research in 2020 and more than $160 million in awarded grants by the CDMRP in 2024.^7,8 Despite these remarkable achievements for urological research, and advancements in care for individuals affected with urological diseases, the importance of advocacy may be greater than ever before.

Although patient advocacy has produced tremendous results, the inherently limited amount of money for appropriations, and the volatility of political cycles, present enduring obstacles to funding research. Bladder cancer (BC) serves as an example of this struggle. Despite being the sixth most common malignancy amongst individuals in the US and the fourth most common malignancy among US service members and veterans, BC remains without a dedicated line of funding from the CDMRP.⁹ Unsuccessful attempts to secure these funds for the last 2 fiscal years means that CDMRP appropriations for this disease are still derived from a shared pool. Although researchers still access funding through NIH and shared CDMRP funding, dedicated CDMRP support could support critical research advancements for patients with BC. The absence of dedicated funding for this disease is a stark reminder of the uphill battle that advocacy organizations face to better care for individuals with BC.

While the benefits of government research funding can be profound, the absence of it may leave patients exposed to interests of private industry. As is true for most aspects of medical research, patient advocacy groups are also susceptible to potential conflicts of interest. Financial disclosures from major pharmaceutical companies in 2019 revealed roughly $120 million in contributions to PAOs.¹⁰ While industry-sponsored support often benefits patients, conflicts of interests can also pose harm. A strong advocacy effort to maintain unbiased government grant funding, without substantial conflicts of interest, is therefore vital to avoid potential reliance on institutions with vested interests. Maintaining a strong advocacy effort is paramount to preserve the impartial medical research that patients deserve.

Urologists, patients, and the medical research community represent a miniscule percentage of people vying for government support in America. If someone visited his/her/their local representative(s) on any given day, he/she/they would see the comings and goings of individuals from vastly different walks of life, each with a cause believed to be vital. To obtain the funding required to advance treatment of human disease, the voice of the urological community must resound amongst this sea of concerns. Doing so begins with an awareness of the importance of grant funding, and the role that patient advocacy plays in obtaining it. Advocacy is critical for urological research to not become relegated to a second-rate issue. Human suffering from the plight of disease cannot be left without representation; we must advocate for our patients, families, and friends.