Clinical trials, once seen as the last hope for individuals facing limited treatment options or having exhausted existing ones, are now being recognized as a viable option that offers newfound optimism and hope for longer life. People facing cancer are finding out that the clinical trial experience is not what it was in the past. To ensure the discovery of more targeted treatments for diverse populations, there is now a focus on the urgent need for increased representation of Black and Brown populations. There is also an increased focus on giving patients the “Cadillac” treatment while they are participating in a trial. Not only do clinical trials present an opportunity to advance science and extend a person’s life, but trial results may lead to innovative treatments for diseases that could someday be diagnosed as chronic rather than terminal. The Tigerlily Foundation’s Clinical Trials Program is a transformational initiative to provide innovative treatments to populations that face the highest disparities. This transformation is exemplified through the stories of real patients like Megan, whose firsthand experience in a clinical trial brought her new hope for life.
Megan's Story
Meet Megan, a spirited 38-year-old who, like many, loves her coffee, has a passion for travel, and eagerly anticipates the next episode of The Great British Baking Show. However, Megan’s life took an unexpected turn when she was diagnosed with breast cancer, not just once, but twice—first at an early stage and later as metastatic breast cancer. Both diagnoses stopped her in her tracks; but that second diagnosis made Megan wonder about the why. Why had chemotherapy not been effective? Why did the disease lie dormant for years and then resurface with such vengeance? Megan’s quest for answers and her determination to extend her life influenced her decision to participate in a clinical trial.
Megan recognized the importance of expanding her treatment options beyond what was already FDA approved. She began researching clinical trials, and although the medical jargon was at first overwhelming, she continued to investigate. Fortunately, she was residing in a city with several cancer research hospitals. (Of note, this is not the case for many patients—some lack transportation and others live in communities that are too far away to travel for a clinical trial.) Another blessing for Megan was that both of her oncologists offered her the opportunity to participate in clinical trials without her having to request it. We know based on patient-reported experiences that many people of color are not offered clinical trials, and they do not know to ask. Difficulties involving transportation, child- care, finances, inability to leave work, and fear of how a clinical trial experience would impact their lives can be barriers to enrollment even if they find a clinical trial.
Megan’s experience was different. She immediately joined a clinical trial, not just out of necessity but also out of a profound sense of purpose. For Megan, it wasn’t just about extending her own life; it was about paving the way for others diagnosed with cancer in the future. She hoped that by allowing her living body to be used for science, what the doctors learned could lead to a cure for others.
Her story is a reminder that clinical trials offer not only a potential lifeline for the individual but also an opportunity to make a lasting impact. Through participation in a clinical trial, Megan was creating a living legacy. Her story resonates as a source of empowerment for all those seeking hope along their cancer journey.
Overcoming Barriers to Trial Participation
Tigerlily Foundation is committed to removing barriers to clinical trial enrollment as well as supporting individuals like you along the way. We accomplish these goals through the following initiatives.
Tigerlily Foundation is committed to removing barriers to clinical trial enrollment as well as to supporting individuals like you along the way.
My Living Legacy Campaign
In our relentless pursuit to dismantle healthcare barriers, Tigerlily Foundation has embarked on a mission to create a trusted, safe, empowering, and supportive community for individuals like Megan through the campaign called My Living Legacy. This initiative serves as a vital resource, equipping you with the knowledge and tools needed to stay informed and engaged along your healthcare journey. From learning about clinical trials to knowing how to talk to your family and healthcare providers about clinical trials, this campaign serves as an opportunity to build a network of advocates, united in the cause to support participation in clinical trials and help ensure that everyone has equal access to life-saving treatments.
This campaign, supported by GSK, includes having conversations with people in underrepresented communities to establish transparency, dispel fears, and build trust in clinical trials. My Living Legacy encourages people to share their thoughts about clinical trials and helps them to understand that unless we have the right science for our bodies we can’t extend or improve quality of life for people who are sick. This change starts with us. My Living Legacy reached 17M+ listeners through a radio PSA, 33M+ readers through online news outlets, 5M+ viewers through television news outlets, 1600+ unique visitors to the campaign website, 286,000 viewers through patient advocates engaging on social media, and 400+ individuals through 1:1 conversations at in-person community events.
Barrier Toolkits
In promoting clinical trials as a real and accessible option, Tigerlily’s barrier toolkits play an important role. No matter where you are in your cancer journey, these toolkits, particularly “Breaking the Barriers to Clinical Trials,” provide the necessary guidance to navigate the barriers that may prevent you from considering or participating in clinical trials. The toolkits present information on what to ask for and teach you how to advocate for yourself. By making use of this practical information, you will be better equipped to make informed decisions about participating in clinical research.
RAISE Platform
RAISE, which stands for Resources and Assistance for Support and Empowerment, offers support to individuals facing chronic diseases who may also be grappling with tough decisions regarding expenses for groceries, childcare, or vital medical care. It’s about making clinical trial adherence possible without feeling like a burden on others. When you create a RAISE profile, you can create a personalized registry of your unique needs, encompassing requests for both financial and nonfinancial assistance. By reaching out to the community, friends, and family through this platform, your network can give you the support you need. This level of support can ease your daily struggles and address the very obstacles that might deter you from participating in a clinical trial.
MY LIFE Matters Magazine
This digital and print publication created for patients and cocurated with patients delivers culturally and lifestyle appropriate content on clinical trials and empowers readers to be their own best advocates. It also offers useful tools as you navigate your healthcare and clinical trial journey. MY LIFE Matters magazine is currently distributed to more than 10,000 locations nationwide, including cancer centers and direct-to- patient sites.
Tigerlily Foundation is a national breast cancer organization whose mission is to educate, empower, support, and advocate for young women ages 15 to 45 before, during, and after breast cancer. Tigerlily Foundation is dedicated to ending disparities of age, stage, and color.
To learn more, visit tigerlilyfoundation.org.
Trials as a Beacon of Hope
Clinical trials have transcended their reputation as an unsafe or last-ditch option and now stand as beacons of hope for individuals grappling with medical challenges. In the resilient spirit of people like Megan, we witness the profound metamorphosis that these trials can ignite. The My Living Legacy campaign, barrier toolkits, and the RAISE platform unite in their mission, bestowing knowledge and empowerment upon those who need it most. In addition, there is tremendous work being done by other people with cancer, patient advocacy groups, biotech companies, healthcare institutions, the FDA, and a myriad of organizations to ensure that trials are understandable, safe, accessible, and accountable to patients and their families.
Together, these collective endeavors can change the lives of millions of people for the better and embody the promise of renewed hope and the prospect of brighter tomorrows. In the powerful words of Megan, “I think of the brave people who put their bodies on the line for me so that I can live a little longer. I vow to continue to do the same for those who will be diagnosed after me, so until there is a cure, use me.”
About the Author
Maimah Karmo is the founder of Tigerlily Foundation, a breast cancer survivor, and an advisory board member of Conquer.
