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Multiple Myeloma Patient Advocate Leaves Lasting Legacy

Multiple Myeloma Patient Advocate Leaves Lasting Legacy
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Published on September 15, 2020

Remembering Cheryl Boyce: Myeloma Advocate, Mentor, Friend

Cheryl Boyce

Cheryl Boyce

Cheryl Boyce, who made a lasting contribution as founding executive director of the Ohio Commission on Minority Health (OCMH) and was a tireless advocate for communities of color, a mentor to myeloma patients and a 22-year multiple myeloma survivor has died.

Boyce died on August 25 in a Columbus, Ohio, hospital. She was 71.

Boyce was diagnosed with multiple myeloma in 1998. According to a tribute by Jennifer Ahlstrom posted on myelomacrowd.org, when initially treated by a doctor who wanted to "watch" her myeloma, she asked, "What are we going to do, watch it grow?"

Improving Communication in Cancer Care

In a 2013 Patient Power interview, Boyce emphasized the importance of open and honest communication with doctors, friends and family.

“I think that there were times that I thought things were so insignificant, he was so busy, and that I shouldn’t have shared it with him,” she said, referring to her relationship with her doctor. “I got to the point I share everything. Multiple myeloma is really confusing because there aren’t definitive answers. Everybody walks their own journey and they experience this disease in their own way. Every tidbit of information you can pick up along the way, everything you can share with somebody else fortifies you for the battle.

She added: “And so I think that for the people who don’t want to share the weakness, for people who feel like they’re talking too much — we all have something to share and to give that will help somebody else, and you just never know what that is or when you’re the person sharing it or receiving it.” 

Ending Racial Disparities in Multiple Myeloma

After her diagnosis, Boyce traveled to Little Rock, Arkansas, to consult with Dr. Bart Barlogie, founder of the Myeloma Institute at the University of Arkansas for Medical Sciences. (He is now the director of Myeloma Research at the Icahn School of Medicine at Mount Sinai in New York.) According to Ahlstrom, while sitting in the waiting room, Boyce asked herself, “Why am I the only black patient here?” 

She later organized the annual Hicks Harris Ferguson Multiple Myeloma Symposium, a myeloma education event focused on the Black community. (The 10th anniversary was canceled earlier this year because of the COVID-19 pandemic.)

According to an article by Greg Brozeit published on myelomacrowd.org, the event was named for three friends and respected community leaders who had myeloma: the Rev. Richard Harris, an African Methodist Episcopal pastor who had an aggressive form of myeloma that caused his sudden death; Eleanor Hicks, a Columbus Public Schools educator and wife of a Baptist pastor whose son became a hematologist-oncologist in large part because of her experience; and Lugenia Ferguson, a singer, missionary and nurse who, according to her son, was given two weeks at diagnosis and went on to live for five years.

“Cheryl was a dynamo when it came to advocating for access to quality and state-of-the-art care for a diverse community of patients,” Patient Power Co-Founder Andrew Schorr said. “As a Black woman living with multiple myeloma, she was a shining light in nationwide efforts to end healthcare disparities.

Childhood Loss Leads to Lifetime of Service

Boyce was raised in East St. Louis, Illinois. According to Ahlstrom, she was inspired to dedicate her life to a career in public health by the premature, preventable, death of her father from a heart attack when she was 14 years old. She earned a BS in Health Education from Southern Illinois University at Carbondale and an MS in Health Planning and Administration from the University of Cincinnati, where she met her husband, Russell Boyce. The couple had one child — Dr. Ebony Boyce Carter, an assistant professor of obstetrics and gynecology at Washington University in St. Louis, Missouri.

She held several positions in health and human services: coordinator of the Ohio Governor's Task Force on Black and Minority Health; program director and associate program director for Advocacy and Protective Services; and worked in the Ohio Department of Health and the Ohio Rehabilitation Services Commission. In 1986, she founded the OCMH, the first state agency in the nation created exclusively to eliminate health disparities for minorities, where she worked until her retirement in 2010.

Myeloma Community Will Miss Mentor, Friend

Friends recalled her passion for patient advocacy and mentorship.

“When Cheryl spoke, you listened,” said Jack Aiello, who was diagnosed with multiple myeloma in 1995 and facilitates a support group in the San Francisco Bay Area. “She articulated her patient’s perspective with clarity and passion, and the myeloma community, and I will miss her dearly.”

“Cheryl was a strong, insightful and caring advocate,” added Cindy Chmielewski, who has been living with multiple myeloma since 2008 and is part of Patient Power’s Patient Engagement team. “Her unique perspectives were always welcomed and eye-opening. Besides an advocate in the myeloma community, Cheryl was my friend. I will miss her warm personality and mentorship dearly.”

 ~Megan Trusdell

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