Tigerlily Foundation’s Clinical Trials Program is a transformational initiative to accelerate the delivery of innovative treatments to our patients, with a strategic focus on populations that are facing the highest disparities.
Why do we do this work?
We know that most patients of color are not offered trials until their cancers are at a more advanced stage.
We know that people of color are underrepresented in clinical trials, yet have the highest mortality rates across multiple disease states.
We know that is unacceptable.
We are working to transform the clinical trial landscape by building trust and transparency, to achieve equity in clinical trials in this lifetime by holding stakeholders accountable and dismantling barriers for patients of color.
Black people account for less than 5% of participants in clinical trials.
(FDA 2019 Drug Trial Snapshot Summary Report)
Black women under 35 get breast cancer at two times the rate of white women and die at three times the rate.
(Lisa A. Carey. et al., “Race, Breast Cancer Subtypes, and Survival in the Carolina Breast Cancer Study,” Journal of the American Medical Association)
Lack of diversity and representation in clinical trials are the primary reasons why it is not known which treatments are most effective treatments for Black women with breast cancer.
(Yedjou CG, Sims JN, Miele L, et al. Health and Racial Disparity in Breast Cancer. Adv Exp Med Biol. 2019;1152:31-49. doi:10.1007/978-3-030-20301-6_3)
The Facts About Clinical Trials
“I wasn’t offered any opportunities to participate in clinical trials, which for me being a person that education is a coping mechanism, that would have been an awesome opportunity.”
“It is important to know that you absolutely have the opportunities to be a part of the studies that can change your life. “
“Aaliyah, what’s the one word you think of when you hear about clinical trials?”
“Shante what’s the one word you think about when you hear the word clinical trials?”
“So, when I was first diagnosed. I thought EXPERIMENTAL now I think of REVOLUTIONARY.”
“I had six extra years with my mom thanks to a breast cancer clinical trial. Now, when other moms are diagnosed with the same type of breast cancer my mom was diagnosed with over 10 years ago (HER2+), they’re no longer immediately told it’s a death sentence. Instead, they have effective treatments available to help keep them with their families longer.”
“Without a breast cancer clinical trial, I would have lost my mom before I graduated high school. Instead, because she participated in one, she was not only at my high school graduation, but was also at my college graduation, helped me move into my first apartment and gave me six more years’ worth of memories together.”
“When I was a kid, my dad was diagnosed with a rare form of cancer the summer before I started middle school. His treatment team essentially told him to get his affairs in order, but he and my mom found a team using an experimental protocol to treat his cancer type. That research saved my dad’s life, and now I work in clinical trials to help make sure other families get more time together like mine did.”
“Clinical research is the backbone of new discoveries that could lead to cures for cancer. Without patient participation, especially with diverse patients of different races and ethnicities, research can not and will not advance for these communities. I hope to continue to see the value patients bring to research reflected in the science community.”
No More Barriers
FOCUS GROUP – Virtual
We are hosting a focus group dedicated to Black women with breast cancer who have not participated in a trial. We aren’t here to try to change your mind-you are the expert on you, and we respect that! Our goal with this group is to create a safe space for you to openly share your experiences, concerns, and any fears that impacted your decision. We will be holding space, listening, and learning from you-the expert!