Experience of Diverse Patients and Families in Clinical Trials

Megan-Claire Chase is the Partnership Director for GRYT Health and lives in Atlanta, Georgia. In this role, she is working to build relationships with non-profit patient advocacy groups to engage their expertise in virtual patient education programs and amplify their resources to support the GRYT Health community. Megan-Claire is an accomplished media and marketing professional with over 15 years of experience in these industries. After being diagnosed with breast cancer (stage IIA invasive lobular) in 2015, she became heavily involved in patient advocacy and research post-treatment. She is a powerful communicator, public speaker, researcher, published writer and blogger of Life on the Cancer Train. In her spare time, she is a consumer reviewer for the Department of Defense Breast Cancer Research Program, a contributing writer for WebMD and host of The Megan-Claire Show for Ancora.ai. Megan-Claire and her work has been featured in national press including The New York Times and People Magazine, as well as through numerous patient advocacy organizations.

Wendy Short Bartie is the Senior Vice President and Head of US Oncology.  Prior to joining BMS, Wendy was Vice President and Head of Commercial Operations for US Oncology at Merck.  In this capacity, Wendy was responsible for leading the Sales, Key Accounts, Market Access, Pricing and Policy organizations within the US Business Unit.  Previously, Wendy served as Associate Vice-President of Global Marketing for Genitourinary Cancers (GU), including renal cell carcinoma, prostate cancer and bladder cancer and as the Global Disease Lead for Women’s Cancer.  Prior to joining Merck, Wendy held a range of commercial roles with increasing responsibility in sales, business analytics and marketing in cardiovascular neuroscience, osteoporosis, lung cancer, supportive care and chronic myeloid leukemia at various companies including Novartis, Heron Therapeutics, Johnson and Johnson, Pharmacia and Abbott Labs.  

Ms. Venus Ginés, a 29-year breast cancer survivor, who in 2017 after 25 years of survivorship suffered a recurrence. In 2018, Venus retired as a faculty member at Baylor College of Medicine in Houston, teaching cultural competence and health literacy, as well as conducting research on Latino medical mistrust.

From her personal experience with breast cancer and her sister’s untimely death to cervical cancer, Venus founded Día de la Mujer Latina, Inc., (DML), in 1997 as a national non-profit organization, celebrating its signature health fiesta in 40 states, Puerto Rico, Mexico, and the Dominican Republic, providing the medically underserved Latina community with culturally and linguistically proficient health education, early detection screening for cancer and other chronic diseases, culturally-tailored preventive programs for Latino teens and patient-centered navigation. She also trained 4512 Promotores/Community Health Workers (P/CHWs) in Texas alone this past year. Venus is a State Certified Instructor of P/CHWs with DML being the first approved bilingual Texas State-Sponsored Certification Training Program. She developed a bilingual training curriculum on the subject matters that affect Latinas disproportionately such as Dispelling Myths and Rumors about Women’s Cancers, STDs, Patient-Centered Care, Mental Health, and more recently on COVID -19, Clinical Trials and Vaccines. On April 9, 2020, she launched the Telehealth Community Navigation Program, Behavioral Health Community Navigator, and in December 2020, the Clinical Trial Community Navigation training, preparing Promotores/CHWs to debunk Misinformation on COVID 19, Vaccines & Clinical Trials. She recently launched the bilingual Telehealth Community Navigation Contact Center to debunk misinformation.

Sheila was diagnosed with Stage IV HER-II+ ER/PR+ breast cancer at the age of 43 in 2009. She has been living with metastatic breast cancer (MBC) for eleven years. She says, “I never knew that metastatic was another word for Stage IV and how important that word would become in my life.”  Sheila’s platform is raising awareness about the racial disparities that exist within the African American breast cancer community and to also raise awareness about clinical trials and how important they are in the recruitment of black women.

Sheila is a 25-year Air Force decorated military veteran, receiving four Air Force Meritorious Service Medals, seven Air Force Commendation Medals and four Air Force Achievement Medals. She is a Young Advocate for Living Beyond Breast Cancer Young Women’s Initiative Program and has just been announced as a Komen Scholar. She is also a Consumer Reviewer for METAvivor and the DOD Breast Cancer Research Program, where she reviews proposals for DoD funding. She is also involved in The Metastatic Breast Cancer Project. She is a board member and a facilitator for Breast Cancer Recovery, an organization that provides the solitude and safe place to integrate all parts of who we are- mind, body, and spirit toward healing.  She is an active member of the National Breast Cancer Coalition and is a 2015 graduate of NBCC’s Project Lead Institute and Advanced Project Lead 2016. Sheila is featured in "A Story Half Told" an initiative started by Pfizer to give MBC patients a voice to telling our side of the breast cancer story.

Judith Abella is a 5-year multiple myeloma survivor in Chicago, IL. Originally diagnosed in 2016 with stage III multiple myeloma, she was given approximately six months to live. She refused to believe that prognosis even with difficulty in her initial treatments and sought a second opinion which ultimately saved her life. Judith’s mission is to help empower patients by knowing their rights to seek a second opinion if they do not feel heard or believed by their care team. She is also an Imerman Angel mentor. Her story has been featured in patient advocacy organizations The Patient Story and Diverse Health Hub.

Ron Fong was a caregiver and advocate for his wife Joan, moving through plans A through P during their 45 month lung cancer journey. He is a lung cancer advocate for those battling lung cancer to honor his wife, who died at age 59, 45 months after being diagnosed with stage IV lung cancer. She went through 15 lines of treatment, including three phase-one clinical trials. Ron chronicled his lung cancer journey on caringbridge at http://bit.ly/blog4Joan. His advocacy is focused on early detection as well as raising awareness about lung cancer. Ron advocates for better early detection to avoid accidental discoveries, and the need for more research to find better treatments to #beatlungcancer. Ron has received recognition for his advocacy, including Caregiver of the Year Award 2017 by the Addario Lung Cancer Foundation https://cdn3.rallybound.com/content/images/img/13159/Gala_past_honorees_7.1.19.pdf and https://www.facebook.com/rfong/videos/10154861449300064/
Ron is a native San Franciscan, has three boys with Joan during their 32 year marriage, and recently re-married. He’s an avid reader and researcher, and a Christ follower.