CURE®’s Multiple Myeloma Heroes® Award Program honors and gives thanks to those who have made it their mission to change the lives of patients with multiple myeloma.
Two oncologists and three survivors turned patient advocates were honored last night during CURE®’s Multiple Myeloma Heroes® awards program.
In particular, CURE Media Group recognized Dr. Cesar Rodriguez Valdes and Tiffany Williams as inaugural recipients of the Multiple Myeloma Health Equity award; as well as Cynthia Chmielewski, J.P. Kealy and Dr. C. Anthony Blau as the Multiple Myeloma Heroes®.
These five individuals received their awards during an in-person celebration — which was also live-streamed to a virtual audience — hosted around the 64th American Society of Hematology Annual Meeting in New Orleans. Support for the 2022 Multiple Myeloma Heroes® award program was provided by Janssen.
“The people we’re honoring tonight with the Multiple Myeloma Heroes awards and the Multiple Myeloma Health Equity Hero awards have advocated for themselves and others in remarkable ways,” Tyrone Brewer, U.S. president of Janssen Oncology, said during the ceremony. “Each honoree delivers something unique in support of patients with multiple myeloma, carving new channels in advancing education, raising critical research funds, creating community connectivity, improving treatment access, addressing health equities and so much more.
“And as these individuals — and all of us here tonight — continue doing our part, someday, someday hopefully not far away, I believe we will find a cure for this rare blood cancer.”
Essays were submitted by colleagues, patients and family members that identified Rodriguez Valdes, Williams, Chmielewski, Kealy and Blau along with approximately two dozen other Multiple Myeloma Heroes® nominees.
Addressing Health Equity Disparities
During the awards program, actor, comedian and radio host D.L. Hughley moderated a panel discussion surrounding health equity in multiple myeloma.
Hughley was joined by Valarie Traynham, a patient advocate, and Dr. Joseph Mikhael, chief medical officer of International Myeloma Foundation and a professor in the Translational Genomics Research Institute at City of Hope Cancer Center in Duarte, California.
The trio addressed some of the challenges and disparities within the multiple myeloma space, and discussed ways all parties — including patients, advocates and oncologists — can improve health equity in this space.
Mikhael noted the significance of a discussion highlighting health care disparities during the event and addressed the challenges that the field faces in tackling what has inherently been built into society.
“What are the root causes that this has taken hundreds of years to build,” he said. “And we sadly build it from top down; from the essence of systemic racism; the way the health care system is built; to trust within that health care; for the insurance that individuals have; (all) those social determinants of health.
“When we talk about trying to get someone the right treatment, no one's going to come from chemo if they have an empty stomach. So making sure that we're caring for those very basic things,” Mikhael said. “And then indeed, at the level of myeloma (specifically), we can talk about awareness, we can talk about access, we can talk about the importance of engaging a community to overcome that. But unless we look at the big picture, and I think part of the problem now (is that) people want an instant solution, they want something that's going to change everything tomorrow. We want change, we want change right away, (but) we've got to look at the big picture and understand that this is built inherently within the society, we have to look at each of those steps.”
Traynham highlighted the significance of a lack of Black doctors in the space and why representation matters.
“When I went through this process, it was hard because there were no Black doctors,” she said. “And where I lived, there were plenty of myeloma specialists, but there were no Black doctors. So, I had to take it upon myself to learn as much as I possibly could and make the decision to go with the doctor that was available to me, although it wasn't a Black doctor, I did my research and picked the best one that I thought was going to suit my needs. And a lot of times we do have to do that, because there's just a shortage of African American doctors out here.”
Going the Extra Mile
Rodriguez Valdes was one of two individuals recognized for their work in breaking down systematic barriers and creating solutions to address health care disparities in the multiple myeloma community.
Rodriguez, who is the clinical director of multiple myeloma at Mount Sinai Hospital in New York, was nominated by his colleague, Donna Catamero.
In her nominating essay, Catamero explained in detail how Rodriguez exemplifies the perfect role model who champions for awareness of health care disparities.
She noted that his foray into advocacy started in the early 2010s when he began arguing for an oral-parity law in North Carolina. Catamero wrote that Rodriguez started advocating for the law after witnessing the inequalities surrounding minority and low-income patient access to oral chemotherapy.
As a faculty member of the Maya Angelou Center for Health Equity in Winston-Salem, North Carolina, Rodriguez promoted grants to provide financial aid for minority and underrepresented patients who would otherwise not be able to participate in clinical trials without the necessary funds. He also partnered with nonprofit organizations, such as the Leukemia & Lymphoma Society, to provide educational talks to Spanish-speaking patients on the importance of joining clinical trials.
This effort, according to Catamero’s essay, increased the number of minorities enrolled in clinical trials at Wake Forest Baptist — Comprehensive Cancer Center in Winston-Salem.
Most recently, Rodriguez joined Mount Sinai Hospital in 2021. Catamero explained that Rodriguez reviewed the demographics of the five boroughs — The Bronx, Brooklyn, Manhattan, Queens and Staten Island — of New York City and identified Kings County as the area with the highest concentration of minorities with myeloma and the highest death rate attributed to the disease.
As a result, he devised a campaign known as “instead of you coming to us, we go to you.” According to Catamero, who is the associate director of myeloma translational research within the Mount Sinai Health System, the myeloma outreach clinic has tackled many obstacles the underserved community faces. For instance, one of those obstacles is that patients often avoid taking off from work since they cannot afford to lose a day’s income traveling to their appointments.
Rodriguez recently met with the Food and Drug Administration to present the clinic model and seek government support for other initiatives like it.
Finding a New Mission
Williams was a pediatric nurse practitioner who dedicated her career to addressing health disparities in children and teenagers. However, after a multiple myeloma diagnosis and the aftereffects of her disease and treatment, she retired.
But, as Williams’ nominator Dawn Brazell wrote in her essay, she found a new mission.
While speaking with Brazell, Williams said, “Throughout my entire nursing career, I have always taken care of people in marginalized populations, people with chronic health care needs, people with major health disparities.
“But when I was diagnosed, I became even more aware of the health disparities that impact people of color with cancer. And I feel like my career set me up for the place I found myself in, as a patient with multiple myeloma, and seeing the statistics, knowing the outcomes, hearing the stories; I just felt like I had an obligation to give a voice to that.”
Williams co-founded the Charleston Area Multiple Myeloma Network Group after learning that there were no local multiple myeloma patient groups. She then founded and continues to facilitate the Orangeburg Myeloma Network Group in South Carolina. One of the goals of both groups, according to Brazell’s essay, is to educate and empower patients.
“Most people don’t know the symptoms and signs of multiple myeloma, but that’s not the way it has to stay,” Williams told Brazell. “I want to do for multiple myeloma what the Komen Foundation did for breast cancer.”
A Lifelong Teacher
Chmielewski received a myeloma diagnosis in July 2008. At the time of her diagnosis, Chmielewski was a fifth-grade science teacher.
However, she had to retire from her 29-year teaching career because of the treatments for her blood cancer. Although she was no longer an educator, she began using her experience as a lifelong learner and teacher to educate herself about myeloma.
According to her nominator, Jennifer Ahlstrom, Chmielewski realized that people needed to be better educated about myeloma to obtain better outcomes. So, she took her love of science, coupled with her passion for teaching and launched a Twitter account, @MyelomaTeacher. Here she began to share relevant information related to myeloma to the broader community.
In fact, Ahlstrom — who was among the inaugural group of Multiple Myeloma Heroes® in 2016 — wrote that Chmielewski is routinely one of the top tweeters at major academic conferences, such as the annual meeting of the American Society of Hematology.
In 2018, Chmielewski was tapped by Ahlstrom — who is also the founder of HealthTree Foundation — to become the director of HealthTree University. The aim of this program was, according to Ahlstrom, to develop video curriculum about the blood cancer to help patients and their families learn more about the disease. To date, there are 41 courses with more than 730 video lessons that are taught by 136 experts in the field of myeloma.
Each session is followed by a quiz to encourage retention of the information. The program has become one of the foundation’s most popular offerings, surpassing more than 380,000 views with 17,735 hours watched.
“With a globally viewed program, Cindy is a myeloma hero to hundreds of thousands of viewers around the world,” Ahlstrom concluded in her nominating essay.
Summiting the Fundraising Mountaintop
Kealy and his family joined a new “club” in April 2014 when he received a multiple myeloma diagnosis, according to his nominator, and wife, Annamarie Kealy.
Immediately following his diagnosis, J.P., Annamarie wrote, wanted to figure out how to best manage his disease while remaining optimistic. A friend told him about a nonprofit organization and an upcoming 5K in a neighboring town outside of Stamford, Connecticut.
Annamarie noted that he registered and set a fundraising goal, which was tripled within a few days. That experience would give him the boost he needed, according to Annamarie, and be the springboard to a life of raising funds for myeloma research.
Not long after the 5K, the family learned about a program that would offer a group of individuals with a connection to the blood cancer to trek across notorious mountains while raising money for research. He was selected to join a group of other patients, doctors and caregivers to trek to Everest Base Camp in Nepal.
Annamarie wrote that they both trained every day while he continued to receive weekly infusions of chemotherapy along with other treatments.
“His resilience and stamina to tolerate this war against his cancer while fundraising and training to climb a mountain, many healthy individuals would never attempt, was inspiring,” she wrote in the essay.
Since that climb to Everest Base Camp, J.P. has trekked Fitz Roy in South America, as well as the Kenai mountains in Alaska.
Through all of these efforts he has helped raise approximately $150,000, of which more than 90% has gone directly toward cancer research.
His focus to raise funds has trickled down to his four children as well, according to Annamarie. She wrote that the children have hosted bake sales and joined in fundraising efforts by running in the New York City half-marathons.
J.P. has also become a mentor for those newly diagnosed with myeloma to help them navigate their “new normal.”
“He has inspired countless patients over the past eight years, but no one more than me,” concluded Annamarie in her essay.
A Personal Connection
Blau was a professor of medicine in hematology for 27 years and was the founder of the Center for Cancer Innovation at the University of Washington in Seattle. Moreover, Blau was the co-founder of the University of Washington Institute for Stem Cell and Regenerative Medicine and chaired the Molecular and Cellular Hematology Study Section for the NIH.
However, none of those accolades factored into Abra Kelson’s decision to nominate Blau as a multiple myeloma hero. Instead, she wrote, Blau has used his experience, expertise and personal cancer journey — he received a diagnosis of multiple myeloma in 2015 — to passionately care for patients and advance the treatment of the disease.
His ability to make his patients feel heard and valued is evidenced by his care of Kelson’s mother. In December 2011, Kelson was caring for her mother who had terminal cancer. She recalled that her mom wanted to go home to continue receiving care rather than continue to travel the 55 miles for treatment.
Compared with other oncologists who pushed for her to relocate closer to the cancer center, Blau facilitated transfer of care to an oncologist closer to where Kelson’s mom lived.
“His compassion and care for my mother, and her family, remain clear,” she wrote in her essay. “I remember he did not rush or make us feel burdened by the time taken. My mother felt heard, cared for and valued. Because of him, my mother could enjoy a better quality of life in the last months of her life.”
Kelson also commended Blau for his recent work as an entrepreneur. Blau founded All4Cure several years ago with the aim of developing a knowledge-sharing platform where patients, health care providers and researchers could collaborate and share their knowledge about the blood cancer and its treatment.
Via the All4Cure forum, patients with multiple myeloma are encouraged to consult with physicians and researchers around the world.
“Breaking down institutional barriers, All4Cure virtually unites patients, physicians, researchers, and subject matter experts worldwide,” she wrote.
Currently, 756 patients with myeloma and 270 physicians and researchers participate on the platform. He also plans to expand the platform to include clinical trials, integrate operations with cancer centers as well as other technology initiatives.
“Undoubtedly, the foundation for every business decision he makes to expand into the future is his guiding principle of honoring what is in the patient's best interest,” she wrote in her essay.
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