Way back in the spring of 2013 (the dawn of what I like to call the Blanke era in SWOG), our board of governors formalized our then patient advocate "group" as a standing administrative committee. With this came a recognition that an advocate should serve a standard five-year term in a disease area, renewable once, for an effective term limit of ten years.

We also recognized we should overlap the tenures of a new advocate and the advocate they would replace. This overlap has now been formalized in the role of patient advocate emeritus, a six-month role to smooth the transition and encourage knowledge sharing between outgoing and incoming advocates.

Ten years on from 2013 brings us to 2023, which means that as of our San Francisco meeting, several of our advocates moved into this outgoing category. Three veteran advocates “termed out” in May and are now serving as advocates emeriti. They merit recognition and our thanks.

Our advocates for bladder cancer (Rick Bangs), lymphoma (Hildy Dillon), and prostate cancer (Tony Crispino) each reached the end of their second term, and we have brought on new advocates in those disease areas (of course, Rick and Hildy are also chair and vice chair of the advocate committee – their terms in those roles will end at our October meeting in Chicago, and I’m now interviewing candidates to replace them in their leadership positions).

I want to take this chance to briefly introduce our three incoming patient advocates in these disease areas.

  • Darrell Nakagawa is SWOG’s new bladder cancer patient advocate. His advocacy experience includes work with the Bladder Cancer Advocacy Network (BCAN), contributing his skills and expertise to the BCAN Think Tank, Patient Summit, and Walk to End Bladder Cancer. He has also served as development committee lead for BCAN’s Chicago chapter. In his patient advocacy service with Northwestern Medicine, Darrell has moderated patient education webinars, and he facilitates Northwestern’s mixed patient support group in bladder cancer. As president of the firm DN Direct, Darrell has had a career in continuous improvement consulting, organizational transformation, process excellence, and marketing communications working with a wide range of organizations.
     
  • Our new patient advocate for lymphoma is Tricia Hernandez, MS. As a senior manager for community engagement with the Leukemia & Lymphoma Society, she works to strengthen the organization’s engagement with patients, caregivers, healthcare professionals, and volunteers. Her areas of focus include disease management and health disparities, community partnerships, and access to cancer education. Within LLS, she has worked with the Comprehensive Cancer Control National Partnership and the Adolescent and Young Adult Advisory Group. Tricia is a survivor of Hodgkin lymphoma.
     
  • Karen Costello, MSS, LSW, OSW-C, is SWOG’s new prostate cancer advocate. Karen’s husband was diagnosed with prostate cancer in early 2023, but her career in oncology care started long before then – in 1991 as a program coordinator at Fox Chase Cancer Center. After earning a master’s in social work, Karen became the oncology social worker at the Hospital of the University of Pennsylvania, where her role included co-facilitating the Abramson Cancer Center’s prostate cancer support group. Over the past 20 years, she has held leadership roles with the Leukemia & Lymphoma Society, the Penn Radiation Oncology Network, and the Cancer Support Community. With expertise in patient advocacy and navigation, she’s now senior director of patient navigation at Cancer Support Community’s HQ Helpline and chairs the Association of Oncology Social Work’s Patient Navigation Special Interest Group.

All three of these advocates are eminently well equipped to continue and expand on the work of their predecessors. Please look for them at our fall group meeting and introduce yourself, particularly if you specialize in one of their disease areas. 

As more of our veteran patient advocates complete their terms representing a disease or committee, some may move to other roles that will allow SWOG (and the larger network) to continue to benefit from their experience and perspective.

For example, our advocate in myeloma, Jack Aiello, will finish his second and final term in that role this fall (the committee is now searching for his successor). But Jack has recently also begun serving as SWOG’s patient advocate representative on the NCTN’s Accrual Core Team. His long experience with the group means he will serve the NCTN well in that role going forward. 

I am grateful to all of those who help give our patients a voice. I thank those who choose to continue to serve the group, and I am equally grateful to those who have just joined us – grateful for their commitment to representing patients in our research endeavor. It’s a critical role, and one I expect will continue to grow in importance and scope.

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Trial of Week

S2200: A Phase II Randomized Trial of Cabozantinib with or without Atezolizumab in Patients with Advanced Papillary Renal Cell Carcinoma (PAPMET2)

SWOG’s S1500 PAPMET trial established cabozantinib as standard of care for treating metastatic papillary renal cell carcinoma. S2200 – aka, PAPMET2 – seeks to build on that standard by randomizing these patients to cabozantinib with or without the added checkpoint inhibitor atezolizumab.

Patients with metastatic Type 1 or Type II papillary renal cell carcinoma may be eligible.

The study chair is Benjamin L. Maughan, MD, PharmD, of the Huntsman Cancer Institute at the University of Utah.

The trial was activated last September and has enrolled 4 patients thus far of its target enrollment goal of 200. It’s open at more than 100 sites, and many more are now working to open it. If your institution opened the S1500 PAPMET trial, you’re likely to find PAPMET2 a good fit as well.

We scored big with PAPMET, setting a new standard of care in this disease. Let’s see if we can do even better for these patients with PAPMET2.

Learn more on the SWOG S2200 page or the CTSU 2200 page.

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