By: Cheryl Jernigan and Patty Spears
Komen Advocates in Science
On March 26th, we lost a beloved friend and exceptional advocate to metastatic breast cancer.
Karen Durham was a dedicated and passionate advocate for Susan G. Komen for many years before her metastatic diagnosis in 2009. She was diagnosed with stage II, ER+ breast cancer in 1989, at age 38, at a time when breast cancer was treated with a “one size fits all” approach: almost all women underwent mastectomy and most received chemotherapy. After completing treatment, Karen served in several volunteer positions at the Komen Dallas Affiliate. In 1995, she moved to Tucson and became a founding Board Member of the Southern Arizona Komen Affiliate. When she returned to Texas in 2000, Karen became a volunteer for the Tyler Affiliate where she held a myriad of roles including, Affiliate Education Chair, and represented the Tyler Affiliate at National Lobby Day. She received the Komen Cameo Award (2005), the Promise of One Award (2009) and her Affiliate awarded her the Joyce Greenberg Volunteer of the Year Award in 2011. Karen was involved in the Komen Advocates in Science since 2007, where she participated in peer review, working groups, and the Susan G. Komen Metastatic Breast Cancer Roundtable.
Karen’s cancer returned almost 20 years after her initial diagnosis, a shocking reality for patients with ER+ breast cancer. Her advocacy only increased as she began the most encompassing and challenging journey of her life. Karen’s courage and willingness to openly share her experience inspired and opened the eyes of many to the ravages of metastatic breast cancer (MBC). She wouldn’t hesitate to share what it was like for her and her husband to be living with metastatic breast cancer. “It is hard when there is no end point. When you finish your treatment at our cancer center, you ring a bell. A metastatic person never gets to do that because they never finish their treatment.” She’d talk about the side effects, the challenges, and their hopes in the constant battle to keep metastatic cancer at bay. Many people didn’t understand her new reality. “I felt like I had a stigma. As if people were saying, ‘Don’t get close to Karen, you are going to catch this from her.’” Often, she was the lone voice in the room, but she seized every opportunity to educate others about MBC, advocate for research and make an impact.
Cheryl Jernigan and Patty Spears
Within a month of her MBC diagnosis, Karen volunteered to participate in a clinical trial that compared the standard of care with the standard of care plus a drug that was approved for certain leukemias. Fortunately, she did exceptionally well on this new therapy; and was allowed to continue receiving the experimental drug even after the trial ended. Karen’s clinical trial experience – which she shared in a 2014 blog post – catapulted her resolve and commitment to research advocacy, and she became a passionate voice for clinical trial participation. Karen recognized the relevance of her participation in the various trials, as it “will possibly help someone else in their journey. I feel so honored to have been able to participate.” She knew that patients participating in clinical trials are key to making progress against MBC and that every therapy that is used to treat breast cancer today was developed and tested in clinical trials.
In 2013 Karen was selected to serve on Komen’s Advocates in Science (AIS) Steering Committee and became one of the inaugural advocate Komen Scholars. In this role, she chaired AIS’s Committee on Advocate Involvement in Peer Review for many years, leading the effort to effectively engage advocates in Komen’s scientific research grant review program. Karen was instrumental in initiating a mentor program for new Komen advocates that guided and supported them through the review process, ensuring they were well prepared, confident and empowered to provide the patient voice to Komen’s grant review.
Karen represented Komen and MBC patients on many local and national programs and events. She served as a member of the Patient Advisory Committee for the American Society for Clinical Oncology (ASCO) CancerLinQ project, spoke at many Komen Affiliate events, and participated in focus groups advising researchers and pharmaceutical companies on their clinical trial design. As a volunteer patient advocate in the Alliance for Clinical Trials in Oncology, she served on the Health Outcomes and Community Oncology Committees for 4 years. Karen was also actively involved in the Metastatic Breast Cancer (MBC) Alliance, a collaboration of many breast cancer advocacy organizations, including Komen, that is focused on improving the lives of those living with metastatic breast cancer.
Over time, her disease progressed and limited her ability to travel, but Karen was not to be stopped. She continued her advocacy work, attending meetings when she was able and participating in others virtually. Just a few months before her death, she was featured in a video about the importance of research and clinical trials.
Karen lived and thrived for 9 years with metastatic breast cancer. Her metastatic diagnosis fueled her passion and drive to make an impact in everything she did, whether it was grant review, mentoring grantees, serving as a consultant or sharing her story. Although outwardly appearing to be a somewhat meek and mild Texan, Karen will always be remembered as a “tough as nails, motor-cycle riding” advocate for research and metastatic breast cancer patients. Her voice, her smile and her determination to make a difference will be greatly missed. But her spirit, passion and inspiration will continue to be a touchstone for many of us in our quest to put an end to breast cancer. Her legacy will live on in the hearts and minds of those she mentored and worked with over the years. Her participation and promotion of clinical trials will leave a lasting legacy to help advance MBC research well into the future. Her impact will never be forgotten.
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