AUA ADVOCACY United We Stand: Patient and Provider Takeaways From the Patient Advocacy Connections Program
By: Jacqueline Zarro, PhD, AUA Patient Advocacy Liaison, Philadelphia, Pennsylvania; Jason Jameson, MD Sexual Medicine Society of North America, Legislative Affairs Committee Member, Phoenix, Arizona | Posted on: 09 Jun 2023
The Patient Advocacy Connections Program is a Urology Care Foundation/AUA event held in parallel to AUA’s Annual Advocacy Summit. Representatives from advocacy organizations, AUA members, and industry partners met most recently in Washington, DC, in March 2023.
Four panel presentations began with cancer survivorship issues focusing on prostate cancer. Speakers included Hossein Sadeghi-Nejad, MD, professor of urology & ob-gyn, director of Men’s Health, NYU Langone Grossman School of Medicine; Christian Nelson, PhD, psycho-Oncologist and chief, Psychiatry Service at Memorial Sloan Kettering Cancer Center; and Terri Likowski, program director, Group Support Services, ZERO—The End of Prostate Cancer.
Discussions addressed the unmet needs of prostate cancer survivors. Patients overall, including those who have undergone surgery, radiation therapy, hormone treatment, and active surveillance, reported changes in sexual feelings and relationships, fear of recurrence and uncertainty, and concerns about the “worries of significant others.”1
Given that all active prostate cancer treatments impact sexual functioning, this issue has significant ramifications yet is often unaddressed, given the associated stigma. Accordingly, an international multidisciplinary team published “Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel,” empirically based guidelines to promote proactive medical education and holistic care.2 Guideline principles inform providers, patients, and partners on how each treatment affects sexual functioning, methods to mitigate the loss, and associated emotional sequelae, such as depression; and how multidisciplinary teams can be supportive. Urologists are urged to implement these recommendations, endorsed by the Sexual Medicine Society of North America, throughout clinical care to aid the more than 3.5 million individuals with prostate cancer.3
Another theme included financial toxicity of treatment, insurance coverage gaps, and barriers limiting access to necessary care. In a survey given to patients of prostate cancer, >60% reported negative impact because of the cost of treatment, prescriptions, and extended interventions for long-term effects. Importantly, it was found that men who experience financial hardship are more likely younger, non-White with lower income, and those who require a caregiver.4 The AUA and patient groups are advocating for policies to ease the financial burden, although copay assistance programs have become a critical means to help patients cover expenses.
To further counter the impact of prostate cancer on individuals and caregivers, support groups are available at no cost through dedicated patient advocacy organizations, such as ZERO Prostate Cancer, that provide national programming with regionally based directors.
Patient Engagement in Research was the second panel topic led by Lisa Schlager, vice president, Public Policy, FORCE: Facing Our Risk of Cancer Empowered, and Wade Bushman, MD, PhD, AUA Research Appropriations Committee member. Key takeaways highlighted how the intersection of research and advocacy benefits overall scientific advancement.
With the advent of genetic testing and its ability to inform research avenues, treatment course, and hereditary conditions, germline and somatic markers have garnered much attention in both the medical and patient communities. Urologists may receive more patient requests for testing, especially when hereditary cancers are suspected.
Notably, the cost of a genetic panel has dropped drastically in recent years, making it more attainable if not already covered by insurance. There are also legislative efforts underway, such as The Reducing Hereditary Cancers Act, requiring Medicare coverage for germline mutation testing and any implicated risk prevention and management measures.
Genetic testing also can be a gateway to expanded treatment options via clinical trials, a growing number of which are for biomarker-driven or targeted cancer treatments. Other avenues for patient engagement in research include participation in observational and longitudinal studies for benign and noncritical conditions, as well as patients serving as advisors for research teams to help review protocols and study materials.
Next, the discussion focused on Telehealth and Rural Access, a topic of great importance to the entirety of the urological community and beyond. Lisa Finkelstein, DO, AUA Urology Telehealth Task Force chair-elect; Mark Gibbons, president and chief executive officer, RetireSafe; and Alexa McKinley, manager of Regulatory Affairs, National Rural Health Association, provided a thorough overview of the topic (Figure 1). As part of the Public Health Emergency declaration under COVID-19, restrictions around reimbursement for telehealth services were relaxed. For urologists, this expanded the bandwidth and capacity to serve patients. For patients, it has been a bridge for accessing necessary care, particularly in rural and medically underserved areas. Continued legislative efforts are underway by the AUA and advocacy partners to establish permanent telehealth reimbursement flexibilities in the future.
In closing out the program, we were honored to have representatives from our industry partners presenting on the Cancer Testing/Screening Landscape: Daneil C. Kuftinec, MD, medical director of Global Medical Affairs, and Bruce Caroll, market access strategy leader—both from Lantheus; and Melissa Bishop-Murphy, senior director of National Government Relations and Multicultural Affairs, and Sue Hensley, senior director, U.S. Advocacy, Professional Relations, and Alliances—both from Pfizer.
Advances with radiopharmaceuticals have moved the needle forward with detection and surveillance. Specifically, prostate-specific membrane antigen and positron emission tomography imaging for prostate cancer may not only provide valuable diagnostic information but a way to closely monitor patients with prostate cancer for metastases. Further, the FIND Act (Facilitating Innovative Nuclear Diagnostics) was highlighted as legislation that would significantly expand access to and reimbursement for advanced nuclear diagnostic imaging technologies.
Closing out the meeting was a strong message for inclusive advocacy. Notably, Pfizer’s Multi-Cultural Health Equity Collective is an initiative to align organizations and address unmet needs. Throughout the Patient Advocacy Connections Program, participants highlighted the benefits of partnering to support the urological community at large (Figure 2). We invite you to learn more through the Urology Care Foundation at www.urologyhealth.org.
- Watson E, Shinkins B, Frith E, et al. Symptoms, unmet needs, psychological well-being and health status in survivors of prostate cancer: implications for redesigning follow-up. BJU Int. 2016;117(6B):E10-E19.
- Wittmann D, Mehta A, McCaughan E, et al. Guidelines for sexual health care for prostate cancer patients: recommendations of an international panel. J Sexual Med. 2022;19(11):1655-1669.
- National Cancer Institute. Cancer Statistics Review, 1975-2013—Previous Version—SEER Cancer Statistics Review. https://seer.cancer.gov/archive/csr/1975_2013/browse_csr.php?sectionSEL=4&pageSEL=sect_04_table.11.html.
- Herrera CD, Guerra CE, Narayan V, et al. Financial toxicity in prostate cancer survivors: a national cross-sectional assessment of subjective financial burden. Urol Oncol. 2023;41(2):105.e1-105.e8.