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 development

• What the 2023 Frontiers in Oncology review found, and what it means for who a drug is designed to work on

• How funding decisions shape which questions researchers can even ask

• Why patients enroll in trials at much higher rates when someone simply asks

• What to request at diagnosis, including biomarker testing, ideally NGS, and a patient or nurse navigator

• How to read your own chart, advocate for accuracy, and document discrepancies while you are still in the hospital

• What Dr. Manley learned about advocating for himself while on Medicaid

CHAPTERS

00:00 The bias does not start at the clinical trial

00:23 Meet Dr. Eugene Manley Jr., PhD

01:15 Detroit roots, chronic asthma, and the road into science

02:31 Why a bench scientist became a patient advocate

03:26 Experiencing medical racism as a patient

05:24 Finding your voice when the system is not listening

07:08 "Alert and oriented": how three words shape your care

08:10 Bring a proxy and read your chart in real time

10:47 When the chart becomes fact: correcting your record

11:20 Why oncology trials still are not representative

12:46 It is not the trial, it is the whole system

13:13 The cell line gap: what the lab starts with

14:39 Where the bias actually begins: basic science

15:44 Breast cancer outcomes: biology, not just zip code

16:28 Reference genomes and databases skew European

17:10 Why he founded the SCHEQ Foundation

20:02 Newly diagnosed: biomarker testing and navigation

21:19 When a clinical trial should be offered to you

22:56 How to start the trial conversation with your team

23:53 Inside the SCHEQ Foundation's work

25:18 Closing thoughts

Dr. 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.

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Website: https://www.mantacares.com

Disclaimer

This 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.

This episode is sponsored by Gilead Sciences. Gilead had no involvement or input in the podcast content. Gilead is working to transform how cancer is treated. We are innovating with next-generation therapies, combinations, and technologies to deliver improved outcomes for people with cancer. From antibody drug conjugates and small molecules to cell therapy-based approaches, our portfolio and pipeline assets are creating new possibilities for people with cancer.

Dr. Sara Tolaney, Chief of the Division of Breast Oncology at Dana-Farber Cancer Institute, returns to Patient From Hell to explain the ASCENT-04/KEYNOTE-D19 study, the phase 3 trial she led as principal investigator, and what it changes for people living with metastatic triple-negative breast cancer.For years, the most effective drugs for metastatic TNBC were only available after first-line chemotherapy had already failed. The problem, as Dr. Tolaney puts it plainly, is that many patients never reach a second line of treatment at all. ASCENT-04 asked whether moving an antibody-drug conjugate to the front, paired with immunotherapy, would change that. Median progression-free survival improved from 7.8 months to 11.2 months, and treatment responses lasted significantly longer.

UPDATE: Since this recorded conversation, the FDA has acted on the data discussed in this episode. On May 22, 2026, Datopotamab Deruxtecan was approved for first-line metastatic TNBC in patients who are not candidates for immunotherapy. On June 24, 2026, Sacituzumab Govitecan was approved for first-line use both as a single agent and in combination with pembrolizumab for PD-L1-positive disease (CPS ≥10). Consult with your care team for the most recent indications and availability of these treatment options.

00:00 The trial that moves the best drugs first

00:31 Welcome back, Dr. Sara Tolaney

00:40 What ASCENT-04 set out to solve

02:00 Why many patients never reach second-line treatment

02:50 What PD-L1 status means for your treatment

04:12 The result: 7.8 to 11.2 months

05:29 What is an antibody-drug conjugate (ADC)?

06:33 Why TROP-2 is the target in triple-negative breast cancer

07:24 How immunotherapy works: taking the brakes off the T cell

09:01 Who was eligible for the trial

10:05 What "controlling" cancer actually means

11:44 Progression-free survival vs. duration of response

13:37 Dr. Tolaney reconsiders: what ASCENT-03 showed

15:51 How trial data reaches your oncologist's office

18:21 The testing checklist after a metastatic diagnosis

19:59 First-line treatment options today

22:27 The new paradigm: ADCs as the first-line backbone

23:51 What comes second line

25:29 Why tumor sequencing matters: somatic BRCA, TMB, trials

27:24 Twenty years of change in triple-negative breast cancer

29:28 Advice for a newly diagnosed patient

Sara M. Tolaney, MD, MPH is Chief of the Division of Breast Oncology and Associate Director of the Susan F. Smith Center for Women's Cancers at Dana-Farber Cancer Institute, and Associate Professor of Medicine at Harvard Medical School. She trained at Princeton University, UC San Francisco, Johns Hopkins University, and Dana-Farber Cancer Institute, and holds a Masters in Public Health (MPH) from Harvard University. She serves on the National Cancer Institute (NCI) Breast Cancer Steering Committee and is Vice Chair for Late-Stage Development in Breast Cancer for the Alliance for Clinical Trials in Oncology. She was principal investigator of ASCENT-04.

🔗 Connect with Patient From Hell

Website: https://www.mantacares.com

Disclaimer

This 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.

Shira Boehler's family is full of doctors, and every one of them told her not to get the full-body MRI. She canceled the appointment repeatedly herself, until her husband rebooked it one time too many and she finally went.

The scan found a 3.8 centimeter mass in her right lung and labeled it a minor finding, with a note to correlate with symptoms. She had none. She was running six miles a day, the picture of health, and had never smoked. A follow-up CT months later showed the mass had grown, and on the Monday she walked into a pulmonary specialist's office she was told she had an invasive adenocarcinoma. She told him it was probably an EMR error. One week later, surgeons removed half her right lung to treat her cancer.

Samira Daswani, host of Patient from Hell and founder of Manta Cares, welcomes lung cancer survivor and bestselling author Shira Boehler for an eye-opening conversation on the part that comes after the story, which is why almost nobody in Shira's position gets caught this early. Screening guidelines currently cover people over 50 with a twenty-pack-per-year smoking history, and fewer than one in five of them actually get scanned, in part because the criteria require disclosing something patients are ashamed of. Shira has been working the problem from both ends since her treatment, negotiating cash prices at imaging centers down to a fraction of what she paid and funding new scans for people who can't cover them through the nonprofit organization she founded, Cancer Doesn't Care.

In this episode, Samira and Shira discuss:

• Why lung cancer is often diagnosed too late

• The importance of early detection and low-dose CT screening

• How people who have never smoked can still develop lung cancer

• The stigma surrounding lung cancer diagnosis

• Current lung cancer screening guidelines

• Insurance coverage, healthcare access, policy reform

• How artificial intelligence may improve cancer screening

• Why patient advocacy is becoming increasingly important in modern healthcare

Chapters

00:00 Introduction

01:00 The Full-Body Scan That Changed Everything

03:32 Diagnosed With Lung Cancer Despite Having No Symptoms

05:30 Access, Privilege & Why Early Detection Isn't Equal

07:10 Building the Cancer Doesn't Care Foundation

09:21 Why Lung Cancer Screening Needs to Change

10:19 Breaking the Stigma Around Lung Cancer

12:26 Who Actually Qualifies for Screening?

14:23 Changing Public Perception Through Advocacy

16:20 Why Patients Must Advocate for Themselves

17:15 AI, False Positives & the Future of Cancer Screening

20:27 Why Lung Cancer Is Often Diagnosed Too Late

21:17 Stage 1 vs. Stage 4 Survival Rates

23:25 Shira's Advice for Anyone Considering Lung Cancer Screening

Shira Kupperman Boehler is a finance professional, health advocate, bestselling author, and lung cancer survivor. Shira holds a degree in Molecular and Cell Biology from the University of California, Berkeley, and an MBA from New York University’s Stern School of Business. Alongside her husband Adam, she has spent her career building and scaling multibillion-dollar healthcare businesses, developing deep relationships across health systems, payers, and policymakers.
After being unexpectedly diagnosed with Stage 1B lung adenocarcinoma despite never smoking and having no symptoms, Shira founded Cancer Doesn't Care, a nonprofit dedicated to expanding access to life-saving lung cancer screening and reducing financial barriers to early detection. She is also the author of the bestselling memoir One Scan Saved My Life, with proceeds supporting patient screening initiatives.

🔗 Connect with Patient From Hell

Website: https://www.mantacares.com

Disclaimer

This 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.