On the day The Chrysalis Initiative founder Jamil Rivers was diagnosed with metastatic breast cancer at age 39, she was a mother of three, caregiver, and working professional. Her disease was not recognized until it had spread to multiple organs and sites in her body. But her diagnosis set in motion a journey of personal transformation that would lead her to become so much more - a powerful force for change to disrupt the institutional racism and implicit bias in cancer care. Her work with The Chrysalis Initiative serves as a model of how CTTI's Transforming Trials 2030 vision can be brought to life to improve the clinical trials ecosystem and reimagine the future of equitable research. Today, Jamil also serves on CTTI's Steering Committee, sharing her insight on how to meaningfully bring diversity to a clinical research industry that has historically studied predominately White patients.

Diagnosing systemic racism in cancer care

While Jamil was devastated by her cancer diagnosis, even more difficult were the challenges she faced as a Black woman seeking relevant cancer support and insights. For months prior to diagnosis, she had asked her doctor about a lingering cough and was told to wait it out. She was only diagnosed with cancer once she demanded a chest scan, which showed a tumor in her lung - leading to more imaging that revealed breast cancer had spread to this location as well as to her liver and other places in her body.

This stunning finding propelled her on a mission to learn everything she could about breast cancer and Black women. That included the disparities Black women face in addressing this disease, the molecular differences in their tumors, and how they respond to medication differently. But finding this information wasn't easy. Studies of U.S. populations have a historically low representation of Black people, so she had to seek anecdotal insights from specialists and centers and other patients about treatments that had the best outcome for Black women who had her form of breast cancer. To understand the therapies that would give her the best chance of survival and a durable response, she also had to go beyond the work of U.S. centers and reference published international research.

Jamil also dug into the statistics and assumptions around Black women with cancer and found some alarming information. For example, Black women are 40 percent more likely than the rest of the population to face mortality from breast cancer, an unfortunate fact that is often attributed to social determinants of health such as income level or lack of health insurance. But Black women have a lower cancer incidence rate compared to White women, and racial disparities are most pronounced among Black women of high socioeconomic status. Black women actually seek care and diagnosis at a younger age than their White counterparts, though their subsequent treatment is often delayed.

Increasingly, Jamil's research led her to the same disturbing conclusion: There is a problem of explicit (conscious) bias, but more importantly, implicit (unconscious) bias that results in a form of systemic racism across cancer care centers. Black women seek care, but are often dismissed, ignored, or treated with prejudices that keep them from receiving an equitable standard of care. Without bold action to deliver more support to this population, the disparities would only continue.

Re-imagining Black cancer support through The Chrysalis Initiative

Thankfully (and in part due to her own self-advocacy), Jamil's cancer treatments effectively shrunk her tumors, and she has been living cancer-free on an oral inhibitor for three years. But she couldn't un-see the inequity in cancer care that had she had witnessed and felt compelled to take action. In 2019, she founded The Chrysalis Initiative to offer support and resources to Black women with breast cancer that speak to their unique challenges, and to directly identify and correct clinical disparities. The organization's name was meaningful to Jamil, given her own life-changing cancer experience. By the textbook definition, a chrysalis is the covering that protects a caterpillar developing into a butterfly. But it's also a symbol of transition, a transformation from a smaller life form into something bigger, more powerful and more revered. In The Chrysalis Initiative, Jamil sought to empower Black women and other disparate groups to confidently embark on their cancer journey fortified by a community of resources and support to ensure they received equitable care.

The Chrysalis Initiative helps patients to navigate through the complexities of breast cancer care by matching them with a coach who provides support and educates patients on what quality care looks and feels like to ensure they can advocate to attain it for themselves. With its cancer center equity assessment program, The Chrysalis Initiative also provides solutions to providers on how to eliminate systemic bias and racism from impacting patients in the care setting and works to connect patients with relevant clinical trials that are matched to their specific type of cancer and history. Patients are also invited to use the Initiative's BC NAVI app, a mobile phone and desktop platform that provides educational support to patients with breast cancer through training modules, webinars, videos, events, links to helpful websites, and more. The app helps to track patient progress and gather data on gaps and successes. Three years after its launch, The Chrysalis Initiative had established itself as a highly respected nonprofit with a growing staff of 20 equity associates and 180 coaches.

A complementary partner in CTTI

While Jamil was launching The Chrysalis Initiative, CTTI was solidifying its transformation vision for the clinical trials ecosystem in 2030 and beyond. Central to CTTI's vision is the idea that clinical trials in the future must be patient-centered and accessible to all populations, better integrated into health processes, and produce outcomes that are meaningful to support the health of our communities. CTTI leadership saw Jamil's exceptional patient advocacy and her work with The Chrysalis Initiative as powerful drivers to these outcomes, and in 2019 she was selected to serve as a patient representative on CTTI's Steering Committee to share her perspective. Jamil also serves on two of CTTI's project teams aimed at improving diversity in clinical trials and engaging stakeholders in the design of clinical trials.

"I am excited by what CTTI is doing to demonstrate the value of diverse patient representation in clinical research and reimagine the way trials are conducted to make them more meaningful and more efficient," said Jamil. "Being part of such a trusted and influential collaborative is a whole new way to advance the mission and vision of The Chrysalis Initiative."