Forging Partnerships to Fight Cancer
Forging Partnerships to Fight Cancer
Cancer researchers and community members come together to address racial disparities in prostate cancer at the molecular and patient level.
Sunlight streams through the windows at the New Covenant Church in Germantown, Philadelphia. It’s the church that Moriah Cunningham grew up in. As she surveys the crowd filled with her family, friends and people who raised her, she’s filled with gratitude. But she also sees a community that faces an insidious, yet profound, threat — cancer. For Moriah, the threat hits close to home.
“My father was diagnosed with cancer when I was seven,” she recalls. “I didn’t even know it at the time. It wasn’t until I was older that my mom told us that he is a cancer survivor.”
Moriah’s father was one of several family members who would be struck by the disease. Particularly, many of her uncles have had prostate cancer. It’s a microcosm of the disproportionate impact that the disease has: Black men are 1.76 times more likely to be diagnosed and 2.14 times more likely to die from prostate cancer compared to white men. The personal impact has driven Moriah to research the biological underpinnings of this racial disparity as a PhD student at Thomas Jefferson University.
But the biggest challenge she has encountered is the pronounced scarcity of data on Black prostate cancer patients in clinical and basic science research.
She soon realized the science was just one aspect — to increase participation in cancer screenings and clinical trials in order to improve representation in the data, she had to engage her community. The gathering at the New Covenant Church, whose congregation is historically African American, was an outreach event she had organized to raise awareness about prostate cancer and provide access to free screenings.
Community engagement is central to decreasing cancer disparities and health disparities in general. Indeed, comprehensive cancer centers, which have the highest designation given by the National Cancer Institute (NCI), must demonstrate a commitment to the communities they serve through outreach. When Thomas Jefferson University’s Sidney Kimmel Comprehensive Cancer Center applied for “comprehensive” status, outreach programs like Moriah’s were noted as an area of strength, along with leading-edge and transdisciplinary research.
The Cancer Center is now one of 57 centers in the country with comprehensive status. With this comes an ever-clear responsibility and ability to connect Philadelphia’s most at-risk populations to cancer research and care in a mutually beneficial way, whereby the science and the community support each other.
Understanding the Racial Disparity in Prostate Cancer
“The reasons why African American men are more likely to develop and die from prostate cancer compared to white men continue to baffle us,” says researcher and clinician Leonard Gomella, MD, the Bernard W. Godwin, Jr. Professor of Prostate Cancer, who chairs the department of urology and is a senior director for clinical affairs at the Cancer Center. “While we’ve come a long way, we haven’t been able to definitively identify the root of this disparity.”
The drivers of this phenomenon are complex and wide-ranging: Evidence points to healthcare access problems, comorbidities, social inequities that result in lifestyle and dietary issues, as well as differences in genetic and molecular pathways that can impact tumor biology in different patient populations. Which of these factors is the most significant has been hotly debated.
This discussion is further complicated by the fact that “race” is a social construct rather than a biological definition. African American communities have diverse and genetically heterogeneous ancestry, and so the biological properties of their cancer as well as their response to cancer treatment is likely to be equally diverse.
“We know that mutations in certain genes can make prostate cancer more aggressive,” says Moriah. “These genetic mutations may vary across and within different populations. The problem is we simply don’t have robust data to make comparisons.” The lack of representation makes it difficult to parse out biological factors from socioeconomic factors that drive disparities.
“One of the ways we can start to overcome this gap in data is to be more targeted with our screening and awareness programs and reach out to communities who are going to benefit the most, like African American men,” says Dr. Gomella. Over the last year, the Cancer Center has worked with community organizations like the Prostate Conditions Education Council and corporate partners such as Dietz & Watson and Janssen to conduct screening in their catchment area. Of the 322 participants, 43% identified as African American. “This data is important for us to know we’re reaching communities with the highest burden of prostate cancer,” says Dr. Gomella. “Moriah’s connection with the New Covenant Church and her project there expands these efforts.”
Compared to white men, black men are:
1.76 times
more likely to be diagnosed with prostate cancer
2.14 times
more likely to die from prostate cancer
How Can Community Engagement Bridge Cancer Disparities?
An important part of that connection is Deacon Albert Blackstock, who has been a church leader for the past 40 years and helped Moriah in her efforts. In fact, he has been at the helm of organizing numerous health-related events for the church’s multicultural community, with particular outreach to Black men. “It was a realization that we are dying at a higher rate.”
When asked why Black men seem particularly reluctant to go to the doctor, Deacon Blackstock points to multiple observations from his community. “So many men would more readily fix their car than fix themselves. But there is also a level of mistrust of the medical community.”
There is a legacy of mistreatment of Black people by scientists and doctors, most notably the Tuskegee syphilis study, which took place between 1930-70, in which lifesaving medication was withheld from Black men. Race continues to play a role in health care, through implicit bias and “race correcting” clinical algorithms that have been shown to systematically disadvantage Black patients. Consequently, a 2022 survey by the Pew Research Center found that 61% of Black adults say that research misconduct is just as likely to occur today; and only 35% say there are measures in place today that will prevent serious cases of misconduct.
This mistrust is a major barrier to Black people participating in research, particularly in clinical trials that could be life-saving. Clinical trials involve the testing of a novel, more targeted therapy, before it’s available on the market.
“Our designation as a Comprehensive Cancer Center means that patients will have even greater access to the latest clinical trials, and potentially earlier in their treatment journey,” says the Center’s director Dr. Andrew Chapman. The benefits of this are reflected in research that has shown that cancer patients treated at comprehensive cancer centers generally lived longer than those treated elsewhere.
But the benefits of clinical trials are largely dependent on patient participation. Numerous studies have shown that minority populations are often underrepresented in clinical trials in the U.S., which can lead to research findings being generalized across populations.
This is problematic in the face of disparities, particularly Black Americans having the highest overall cancer death rate of any racial or ethnic group in the U.S. for more than four decades.
In order to improve clinical trial participation, the NCI made a call to action to cancer centers to engage their catchment areas to build trust and respond to the needs of underserved communities. In fact, in 2016, the NCI added community outreach and engagement as an evaluation criterion for a center to be NCI-designated, a status that the Cancer Center earned again in 2017.
Establishing Community Engagement Across the Cancer Research Continuum
“While every NCI-designated cancer center has a community outreach component, what you do with that can set you apart,” says Amy Leader, PhD, director of the Cancer Center’s office of community outreach and engagement, which was established three years ago.
Since its inception, the Cancer Center’s outreach office has gradually built an infrastructure to sustain a bidirectional relationship between the Cancer Center and the community. These include mobile cancer screenings, bringing clinical trial advocates to communities, and inviting community members to work with scientists at the Cancer Center so they can experience research behind-the-scenes. These approaches have the capacity to improve health outcomes and empower community members.
However, there are challenges. A study found that only 5% of cancer survivors reported participating in research, even though 26% expressed interest in participating. One barrier is the disconnect between laboratory scientists and the community. Historically, patients are more likely to interact with clinicians and population science researchers like Dr. Leader. But basic science researchers are far more removed, and lack formal training in communicating to the general public.
To bridge this gap, the Center’s outreach office and the office of cancer research training and education coordination collaborated to create a unique program in which cancer research trainees like Moriah design, implement and evaluate a community engagement project. This is an opportunity for early-career scientists to build communication skills and an appreciation for the community’s needs, and in turn for community members to voice their personal experiences to scientists. This dialogue can generate research that is useful to and trusted by patients.
When Moriah’s mentor at the time Matthew Schiewer, PhD, learned about the program, he knew it was right up Moriah’s alley and encouraged her to apply. “I already had a strong interest in science communication and outreach,” says Moriah, “but when I realized how the lack of community engagement directly impacts my research, it became a passion.” She became one of four trainees in the program’s inaugural cohort.
Bringing the Science to the Community
As Moriah thought about how her project could address the burden of prostate cancer among Black men, her childhood church seemed like a great place to start. When she reached out to Deacon Blackstock with the idea, he jumped at the opportunity. “We are keenly aware of the burden of prostate cancer in our community,” he says. “Moreover, Moriah represents a voice at the table.”
The impact of her community seeing themselves represented in the scientific arena was not lost on Moriah. Black people are historically underrepresented in science: a recent report found that just 9% of the STEM workforce in the U.S. identifies as Black. “Many men we’re trying to reach remember things like the Tuskegee experiments,” says Moriah. “Knowing that research that might help them is being done by someone from their community helps to build trust.”
The groundwork for this trust involved educating the community about the disease and offering transparency around related research findings. Moriah put together a short presentation on important prostate cancer facts. She also gave insight into the scientific process, using her own work as an example: She focuses on a protein called Poly (ADPribose) polymerase-1 or PARP-1, which plays a role in DNA damage. Drugs that inhibit PARP-1 activity are sometimes used to treat prostate cancer.
Moriah also invited Jefferson urologist Dr. Whitney Smith and epidemiologist Dr. Charnita Ziegler-Johnson to speak — they both identify as Black. For some in the audience, it was their first time encountering researchers and clinicians who looked like them. Even the event volunteers from nearby West Chester University’s student organization called “Empowering Communities Around You” identified as Black. “I really wanted this event to be by the community, for the community,” says Moriah.
Free prostate cancer screening for prostate specific antigen (PSA) was offered on-site during the event to emphasize the importance of early detection. Of the 47 attendees, all who identified as Black men, more than half received screening — for some it was their first time. Five men ended up having an elevated PSA level and were referred to a urologist at the Cancer Center for follow-up care.
“I’m really thankful I got screened. It turns out I had a recurrence of prostate cancer that I had developed decades ago,” says one individual, who has been a key figure in Moriah’s life at the church. “But because I caught it at an early stage, my prognosis is good, despite being older.”
For Moriah, it was deep and personal validation of the project. “It was so rewarding to learn that the event changed someone’s life,” she says. And it changed hers too – she went back to the laboratory with ideas that would influence her research trajectory.
Bringing the Community to the Science
When Moriah presented her work on PARP-1 at the event and how targeting its activity can affect prostate cancer, someone in the audience asked: Do Black men respond differently to PARP inhibitors?
It’s something that had already been percolating in Moriah’s mind and was unexplored in the field. But hearing her community express interest spurred her to make this a focus of her thesis research. She first had to understand whether there were differences in PARP-1 between Black and white prostate cancer patients. Normally, PARP-1 helps recruit repair proteins to a site of damaged DNA, moving away once the repair protein is in place. However, in prostate cancer, PARP-1 becomes overactive, allowing the cancer cells to grow with abnormal DNA. A few years ago, Dr. Schiewer had collected important data to describe the mechanisms of how overactive PARP-1 influences the availability of repair proteins in prostate cancer.
Moriah decided to reanalyze this data and separate the tissue samples by race. There were around 50 European American samples and only 12 African American samples with prostate cancer. She compared PARP-1 activity between the two groups and her preliminary analysis indicated that PARP-1 activity is higher in African American patients. This could, in turn, make prostate cancer more aggressive in African American patients vs. European American patients. It could also mean that PARP inhibitors might be differentially effective in African American patients.
While the preliminary results are promising, Moriah is collecting more evidence. Using tissue explants derived from patients that retain all the salient features of the original tumor, she plans to explore if there are any other genetic differences in PARP-1 and response to PARP-1 inhibitors between different racial backgrounds.
“I hope this work shows why representation of different patient populations, especially high-risk ones, is so important in clinical research,” says Moriah.
Expanding the Personal Connection
Moriah would go on to organize a second event for prostate cancer at the New Covenant church — she was one of two trainees who continued their work beyond the scope of the Cancer Center’s outreach program. She brought in more Black scientific experts and an advocate from Prostate Cancer Zero, the leading national nonprofit that provides education and support to communities impacted by the disease.
Dr. Leader and the outreach office are rigorously collecting data on their programming, including the projects of Moriah and the three other trainees in her cohort. “This data allows us to evaluate the effectiveness of our initiatives so we can improve them in the future,” says Dr. Leader.
The Cancer Center will continue to build on their outreach to at-risk communities, providing evidence-based solutions for community engagement in research. “Moriah stepping out of the laboratory and into the community sends a powerful message,” says Dr. Gomella. “Anytime we can make that personal connection, it resonates more with people. The information becomes more meaningful and they’re more likely to be proactive about screening and participating in research.”
“We want our patients to know we envelop you with care,” says Dr. Chapman. “You’re not only going to be surrounded by the brightest minds in cancer research, but you are also going to be supported in every way.”
For Moriah, community engagement will continue to be a central part of her scientific career. “I feel like you have to have a certain amount of love for your community to do research that is going to change lives,” she says. “This work is a labor of love.”
A recording of the prostate cancer outreach event held in 2023 at the New Covenant Church, Philadelphia.
