Cancer Health Disparities: How Inequity Affects Patient Outcomes
Featuring: Eugene Manley, PhD, Brad Power, Emily Kim
In short
Eugene Manley, PhD, founder of the STEMM & Cancer Health Equity (SCHEQ) Foundation, walks through the concrete barriers Black and Hispanic cancer patients face — from low clinical trial participation (often under 4%) and limited biomarker testing to financial toxicity and a historical lack of trust in the medical system. He explains how a less diverse healthcare workforce makes these problems worse, and offers practical steps patients, caregivers, and systems can take to push toward more equitable care.
- •Ask your oncologist specifically about biomarker testing and all available treatment options — don't wait to be offered them.
- •If clinical trials are relevant to your cancer type, ask your care team whether you qualify; Black and Hispanic patients are significantly underenrolled and trials need broader representation.
- •If cost is a barrier, ask about community health centers, sliding-scale payment options, or financial assistance programs — 'financial toxicity' is a recognized problem your team can help address.
- •Connect with patient communities like the 'Shades of Color' Facebook group for Black and Latino lung cancer patients, where you can find support and share experiences with others who face similar challenges.
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Brad Power and Emily Kim August 28, 2024 “The mission of SCHEQ is to increase some workforce diversity and improve outcomes for underrepresented, underserved, and marginalized populations navigating the cancer care continuum.
Meeting Summary
Black and Hispanic patients face all of the challenges that other cancer patients face: emotional distress and anxiety, lack of knowledge about their disease and testing and treatment options, access to information and therapies, and the complex and dis-integrated medical and payment system.
People of color face added challenges: a medical system with doctors who don't look like them and understand their issues, medical databases that don't include a representative sample of people of their background, a history of mistreatment by the medical system which has created a culture of skepticism and avoidance, and a culture of not openly discussing health issues.
Eugene Manley, PhD, the Founder and CEO of the STEMM & Cancer Health Equity (SCHEQ) Foundation, is uniquely qualified to explore these challenges and offer solutions. The mission of SCHEQ is to increase STEMM (Science, Technology, Engineering, Math, and Medicine) workforce diversity and improve outcomes for underserved populations navigating the cancer care continuum.
By training, he is a mechanical engineer, biomedical engineer, and cell and molecular biologist with expertise in musculoskeletal biology, cancer biology, and biomechanics. He also happens to be a first generation scholar from inner city Detroit, so he has seen and overcome many barriers along the way.
He transitioned to the nonprofit space and worked for the American Association for Cancer Research and two lung cancer patient advocacy organizations in roles spanning fundraising, grant administration, mentorship and training program development, career development award creation, health equity, and advocacy for underserved patients navigating the lung cancer care continuum.
He still partners with institutions to publish studies on the lack of diversity in lung cancer cell lines and the experiences of black patients navigating lung cancer screening. He serves on local, national, and international organizations offering his unique insights. He is a member of the National Lung Cancer Roundtable Stigma & Nihilism and Health Equity Task Forces.
He also is a member of the PCORI (Patient Centered Outcomes Research Institute) Healthcare Delivery and Disparities Research (HDDR) Advisory Panel, and serves as a Patient Grant Reviewer. At a local level he is a member of the Stony Brook Medical Center Community Advisory Council and sits on the Advisory Board for Philly Student Doctors. What are the unique challenges that Black and Hispanic cancer patients face?
•Low representation in clinical trials (often less than 4% participation)
•Limited access to comprehensive biomarker testing
•Higher likelihood of being underinsured or uninsured; “Financial toxicity” of cancer treatments
•Lack of diverse healthcare providers and medical staff
•Systemic bias and racism in healthcare delivery
•Limited information and resources in their communities
•Digital divide preventing access to health information
•Cultural barriers that discourage discussing health issues What can Black and Hispanic patients and their loved ones do to overcome their unique challenges in navigating cancer care?
•Be an active advocate for yourself by seeking second opinions, asking about all available treatment options, requesting comprehensive biomarker testing, and understanding your full range of healthcare choices.
•Join supportive communities like the new "Shades of Color" Facebook group for black and Latino lung cancer patients, advocacy groups focused on specific cancer types, and patient support networks that provide information and resources; share your experiences to help other patients.
•Educate yourself by attending health equity summits and webinars, using digital health tools and resources, learning about clinical trials and screening guidelines, and understanding your specific cancer's biomarkers and treatment options.
•Seek out healthcare providers who understand your community's needs.
•Investigate financial support for treatments, e.g., sliding scale or community health center options. What are the core areas that need to be addressed at a systems level to make change for people of color?
•Increase STEMM (Science, Technology, Engineering, Math, and Medicine) access and exposure for diverse scholars at early ages so they know they can go into STEMM fields.
•Develop and implement comprehensive mentorship, training, professional development, workshops, and wrap-around skills to help diverse scholars from undergrad through early career faculty navigate their degrees, career transitions, and set them up to be more successful professionally.
•Create infographics with diverse representation to break down basic medical information and then cancer information.
•Have patients advocate for the care they should get versus what they do get. How can you learn more about racial disparities in cancer care and how to improve outcomes for people of color?
•See the work of SCHEQ (STEMM and Cancer Health Equity) to increase STEMM (Science, Technology, Engineering, Math, and Medicine) workforce diversity and improve outcomes for underrepresented, underserved, and marginalized populations across the cancer care continuum
•Contact Dr. Manley at EManley@scheq.org
•Research Rabble Health which is using digital tools and partnerships with pharmaceutical companies to improve access to care for underserved communities The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. Meeting Notes KEYWORDS patients, eugene, talk, cancer, lung cancer, people, work, trials, rochelle, black, community, screening, care, issues, disparities, representation, populations, sarcomas, health, prostate cancer SPEAKERS Eugene Manley (47%), Brad Power (24%), Rochelle Prosser (10%), Tucker Herbert (5%), Frank Nothaft (5%), Chris Apfel (3%), Ryan Moon (2%), Rebecca Driscoll (2%), Brian McCloskey (1%) SUMMARY Eugene Manley is the founder of the STEMM & Cancer Health Equity (SCHEQ) Foundation. Its mission is to increase STEMM (Science, Technology, Engineering, Math, and Medicine) workforce diversity and improve outcomes for underserved populations navigating the cancer care continuum. Health inequities cost $320 billion annually and lead to $42 billion in lost productivity. There is a lack of diversity in clinical trials, with only 3-4% black participation in lung cancer trials. Minorities are underrepresented in STEMM fields and need better mentorship. Digital tools and community outreach can improve access and advocacy. COVID-19 reduced cancer screening rates. Underserved communities need financial and informational support. OUTLINE Introductions
•Dr. Eugene Manley, the founder and CEO of the STEMM and Cancer Health Equity Foundation, talked about equity in cancer care.
•He trained as a mechanical engineer, biomedical engineer, and cell and molecular biologist.
•He has worked in musculoskeletal biology, biomechanics, and cancer biology, specifically lung and breast cancer.
•He transitioned to the nonprofit space, working at the AACR, Lung Cancer Research Foundation, and Lungevity.
•Diverse scholars in academic fields face challenges, including a lack of diversity in leadership and mentorship. Health Inequities and Clinical Trial Diversity
•Dr. Manley discussed the economic impact of health inequities, citing $320 billion annually and $42 billion in lost productivity due to racial and ethnic disparities.
•He mentioned the lack of diversity in clinical trials, with the Acute View report showing the lowest trial diversity in a decade.
•He pointed out the bias and racism in care delivery, affecting underserved communities and patients who do not speak English.
•He emphasizes the need for diverse teams and accurate representation in clinical trials to improve outcomes for all populations. Mission and Objectives of the STEMM and Cancer Health Equity Foundation
•Dr. Manley outlined the mission of the foundation: to increase workforce diversity, improve outcomes for underserved populations, and enhance research impact.
•The foundation aims to support diverse scholars from K-12 through academic training, providing exposure, access, and mentorship.
•The foundation also focuses on improving outcomes for underserved populations by providing information and resources.
•He highlighted the importance of enhancing research that impacts these populations and the need for a trained workforce that reflects the communities they serve. Data on Representation in STEM and Clinical Trials
•Dr. Manley presented data from the NSF, showing the lack of representation of American Indian or Alaskan Native, African Americans, and Hispanics in biology degrees and PhDs.
•He discussed the underrepresentation of these groups in the medical workforce and clinical trials.
•He shared data from lung cancer trials, showing low participation rates of black and Hispanic populations.
•He emphasized the need for more targeted clinical trials to address disparities and improve outcomes for all populations. Challenges in Lung Cancer Research and Cell Line Diversity
•Dr. Manley discussed the lack of racial and ethnic diversity and gender representation in lung cancer cell lines.
•He highlighted the significant male-to-female ratio in cell lines and the need for more diverse representation.
•He mentioned the importance of using cell lines that reflect the populations with the greatest disparities.
•He emphasized the need for more inclusive and representative research to address health inequities. Building Trust and Representation in Cancer Communities
•Brad Power and Dr. Manley discussed the challenges of engaging African American men in cancer forums and the importance of representation.
•Rochelle Prosser shared her experience with support groups and the need for trust and representation to build community.
•Dr. Manley and Rochelle Prosser emphasized the importance of intentional outreach and building partnerships with community groups.
•Brian McCloskey asked for recommendations on building trust with underrepresented communities, and Dr. Manley suggested reaching out to advocacy groups and community leaders. Digital Tools and Access to Information
•Frank Nothaft discussed the importance of digital tools in making information accessible to all, especially in under-resourced settings.
•Dr. Manley agreed but highlighted the digital divide and the need for both digital and print resources.
•Rochelle Prosser and Ryan Moon suggested potential contacts for collaboration, including Dr. Kim Rhoads and the Zero Cancer group.
•Tucker introduces Rabble Health, a mobile app to help patients and caregivers navigate the healthcare ecosystem, and discusses its success in Memphis. Addressing Financial and Access Barriers
•Dr. Manley discussed the financial toxicity of cancer treatment and the need for more affordable options.
•Rochelle Prosser mentioned the National Institute of Health's failed program to pay for patient transportation to screenings.
•Dr. Manley and Rochelle Prosser emphasized the importance of educating providers and improving access to biomarker testing.
•Rebecca Driscoll highlighted the challenges of offering and covering targeted therapies, especially for underserved populations. Upcoming Summit and Facebook Group
•Dr. Manley shared information about the second Lung Cancer Health Equity Summit in November, which aims to bring together stakeholders to discuss solutions for reducing disparities and improving outcomes for black and Latino patients.
•He mentioned the creation of a Facebook group for black and Latino lung cancer patients and survivors.
Full transcript
Brad Power This is the Cancer Patient Lab. We're honored to have Eugene Manley join us. He'll be talking about equity in cancer care and some of the issues that he's been working on in disparities, which is, of course, a well understood issue that got highlighted by the pandemic. Eugene was introduced to us through Rochelle Prosser, who is a super caregiver, both for her family, but also more generally.
If you haven't seen or heard of Rochelle, you should check her out and the session we had with her . This is for information purposes only. This is not medical advice. We try to give information to patients such that they can take it to their medical team and help guide their care. The Cancer Patient Lab is a patient-led, non-profit, all volunteer organization.
We request that people make donations of their time and money, and you can do that through our website. Eugene Manley 2:02 I'm Eugene Manley, the founder and CEO of the STEMM and Cancer Health Equity Foundation, or SCHEQ Foundation. I'll have more description about the nonprofit. By training, I'm a mechanical engineer, biomedical engineer, and a cell and molecular biologist.
A lot of my work has revolved around musculoskeletal biology, biomechanics and different approaches, and cancer biology, specifically related to lung and breast cancer.
I transitioned to the nonprofit space and have worked at the AACR, Lung Cancer Research Foundation, and Lungevity, in roles that have spanned grant administration, fundraising, mentorship and training program development, health equity, running webinars, and a lot of STEM outreach and community engagement. As I went through my career, I saw a lot of challenges for diverse scholars in academic fields.
Often there's a lack of diversity as far as representation of the faculty. There's a lack of diversity and leadership, and many people get on these programs that support diverse scholars, but we don't really do a lot to ensure that these diverse scholars are advancing, and many of these scholars, overcoming many things, will get into these academic and medical spaces.
We really should be making sure they can excel, because we need them in the workforce to provide that standard of care for these underserved populations. I launched SCHEQ about a year ago. I should probably make a post about that. The overarching thing that we're really trying to talk about is that we know health inequities cost about $320 billion annually. We know racial and ethnic disparities cost $42 billion annually in lost productivity.
These numbers change depending on the reference and citation that you find. Low income individuals often either have no insurance or are underinsured, and so this impacts the care that can be delivered or the quality of care that they receive.
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