Here All Year

Clinical Trials 101

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Each month, our Here All Year campaign explored a new topic around metastatic breast cancer—from myth and stigma busters, to new research and strategies for improving outcomes. Want to help make a difference for people living with MBC, all year long? Dig deeper into the research, explore the available resources, watch patient stories and share them on your social and email channels.

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Clinical Trials 101

Clinical trials are essential to breast cancer research and treatment; the treatments breast cancer patients receive today were developed in clinical trials. Yet fewer than 5% of adult cancer patients participate in this critical step in the research process. We’re exploring why that is, and what can be done to demystify clinical trials and address some of the barriers preventing patients from participating.

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The MBC Alliance’s interactive, web and mobile-friendly patient experience registry!

You can help accelerate metastatic breast cancer research and get potential matches with clinical trials. Based on information you enter, you’ll receive potential clinical trial matches, personalized insights and alerts with MBC news and events.

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Clinical trials enroll volunteers to study new treatments as well as new ways of preventing cancer, diagnosing cancer, managing side effects, or improving quality of life. Every clinical trial is designed with patient safety as the top priority. Learning terms associated with clinical trials, how to find a clinical trial, and questions to ask your doctor and the clinical trial’s research team can help you decide if a clinical trial is right for you.
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There are several reasons that contribute to this poor rate of participation by adults, one of which is that information about trials can be hard to find, and understand. That’s why we’re dedicating this month to learning the facts about clinical trials, and how to find them. Click here for an in-depth explanation on what clinical trials are, and how to join one.
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In cancer clinical trials from 2008 to 2018, only 3% of participants were Black, but Black women are more likely to die of breast cancer than any other demographic. Nearly one-third of Black women have indicated that they feel the medical community cannot be trusted, compared to 4% of white women. Patient advocates like Sheila McGlown are working to change that by demystifying clinical trials for Black women.
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There are many reasons why 95% of adult cancer patients don’t participate in clinical trials. Exclusion criteria, while necessary, can be overly restrictive. There can be a financial burden because Medicaid does not cover clinical trial participation, or there may not be clinical trials easily accessible to patients in their area. Click the Learn More button to better understand these barriers, and what can be done to address them.
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Christine Hodgdon was diagnosed with de novo metastatic breast cancer in 2015, at the age of 34. She is a patient advocate member of the Metastatic Breast Cancer Alliance and leads their Breast Cancer Brain Metastasis Initiative with the goal to address the unmet research needs of breast cancer patients living with central nervous system metastasis. Important to any of the initiatives with which Christine is involved in ensuring that health disparities and inequities are addressed, especially in underserved and vulnerable populations that are disproportionately impacted by breast cancer. She launched her website, TheStormRiders.org, which provides a searchable clinical trial database to make it easier for patients to find clinical trials. She is also a co-founder of GRASP – Guiding Researchers & Advocates to Scientific Partnerships, a program to empower patients and researchers to exchange ideas and learn from each other.
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Deborah Collyar was diagnosed with early stage breast cancer at the age of 32, and she has been a leader in patient engagement and advocacy since that first diagnosis. She utilizes her business leadership, IT, and communication skills to bridge research gaps between scientists, medical providers, and patients. She founded the Patient Advocates in Research (PAIR) international network in 1996, “where research meets reality” and consults with the health and medical research communities. Her work encompasses many diseases, programs and policies at grassroots, national and international levels, and emphasizes patient issues throughout early development and protocols, recruitment, retention, and results reporting. Deborah encourages innovation in clinical trials and healthcare delivery and has been a key member in pivotal projects with, among others, the US NIH, ASCO, AACR, and the Oncology Research Information Exchange Network (ORIEN). She is a speaker, blogger, author, grant team member, trainer—including this presentation to the MBC Alliance—and faculty at professional workshops where she presents the patient perspective. She and her husband have survived 3+ cancers, and they work with multiple communities and patients.
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Ricki Fairley is a Stage 3A Triple Negative Breast Cancer Survivor/Thriver. She brings her passion, marketing experience, and early stage BC lived experience to the MBC advocacy world. She co-founded TOUCH, The Black Breast Cancer Alliance to address Black Breast Cancer as a unique and special disease state, with the overall goal of reducing the mortality rate for Black women. TOUCH recently joined the Alliance as its newest non-profit member. Ricki founded and co-hosts “The Doctor Is In,” a weekly live web series on the BlackDoctor.org Facebook page. She is also a founding member of the collaboration #BlackDataMatters with Breastcancer.org, Ciitizen, Center for Healthcare Innovation, Morehouse School of Medicine and Susan G. Komen to encourage and elevate the importance of Black women participating in clinical trial research.
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Sheila McGlown was diagnosed with de novo metastatic breast cancer in December 2009, at the age of 43. She is a patient advocate leader, Department of Defense Breast Cancer Research Program Advocate, a volunteer for the Living Beyond Breast Cancer Helpline, and a 2020/2021 Portrait of Hope Ambassador for the St. Louis American Cancer Society. She works with a wide range of researchers, medical professionals and community leaders engaging and collaborating to make an impact. Sheila is on a mission to use her platform as a Black woman to empower and support women and men diagnosed with breast cancer by sharing the useful tools and techniques she applied to navigate through her cancer journey, including participation in clinical trials.
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