Show notes
Researchers studying lung cancer draw on more than 800 cell lines as a scientific baseline. Not one of them came from a Hispanic/Latin(x), American Indian/Alaska Native, or Native Hawaiian/Pacific Islander patient, and only about 3% are from Black patients. Eugene Manley Jr., PhD is a biomedical research scientist, mechanical engineer, patient advocate, and the Founder and CEO of the STEMM & Cancer Health Equity (SCHEQ) Foundation in New York City. Before founding SCHEQ, he served as Director of STEM Workforce Initiatives at LUNGevity. He also co-authored the review in Frontiers in Oncology that uncovered the patient mix and cataloged the lung cancer cell lines available to researchers worldwide.In this episode, he and host Samira Daswani trace a problem most conversations about clinical trial diversity never reach. The underrepresentation does not begin at enrollment. It begins upstream, in the cell lines, reference genomes, and funding decisions that shape what science gets done at all.Dr. Manley’s review found 390 lung cancer cell lines from Asian patients and nearly 200 from White patients, but only 31 from Black patients and none at all from three other groups. When the input material is not representative, no amount of downstream clinical trial recruitment can fix it.The conversation covers:Why cell lines and reference genomes are the real starting point for drug developmentWhat the 2023 Frontiers in Oncology review found, and what it means for who a drug is designed to work onHow funding decisions shape which questions researchers can even askWhy patients enroll in trials at much higher rates when someone simply asksWhat to request at diagnosis, including biomarker testing, ideally NGS, and a patient or nurse navigatorHow to read your own chart, advocate for accuracy, and document discrepancies while you are still in the hospitalWhat Dr. Manley learned about advocating for himself while on MedicaidCHAPTERS00:00 The bias does not start at the clinical trial00:23 Meet Dr. Eugene Manley Jr., PhD01:15 Detroit roots, chronic asthma, and the road into science02:31 Why a bench scientist became a patient advocate03:26 Experiencing medical racism as a patient05:24 Finding your voice when the system is not listening07:08 "Alert and oriented": how three words shape your care08:10 Bring a proxy and read your chart in real time10:47 When the chart becomes fact: correcting your record11:20 Why oncology trials still are not representative12:46 It is not the trial, it is the whole system13:13 The cell line gap: what the lab starts with14:39 Where the bias actually begins: basic science15:44 Breast cancer outcomes: biology, not just zip code16:28 Reference genomes and databases skew European17:10 Why he founded the SCHEQ Foundation20:02 Newly diagnosed: biomarker testing and navigation21:19 When a clinical trial should be offered to you22:56 How to start the trial conversation with your team23:53 Inside the SCHEQ Foundation's work25:18 Closing thoughtsDr. Eugene Manley, Jr., PhD, MS, is a biomedical scientist-turned-social impact leader and Founder & CEO of the STEMM & Cancer Health Equity (SCHEQ) Foundation. With more than 20 years of experience spanning molecular biology, cancer research, nonprofit strategy, workforce development, and health equity, he has held leadership roles with organizations including AACR, LCRF, and LUNGevity Foundation. Through SCHEQ, Dr. Manley advances STEMM workforce diversity and patient-centered cancer solutions, with a focus on improving access to screening, biomarker testing, clinical trials, and survivorship resources for underserved communities.🔗 Connect with Patient From HellWebsite: https://www.mantacares.comDisclaimerThis podcast is intended for educational and informational purposes only and should not be considered medical advice. Always consult a qualified healthcare professional regarding diagnosis, treatment, or medical decisions.