We recently connected with Jamil Rivers and have shared our conversation below.
Jamil , thanks for joining us, excited to have you contributing your stories and insights. Was there a defining moment in your professional career? A moment that changed the trajectory of your career?
My defining moment was a series of moments that crossed from my personal life into a new professional life. At age 39, I was diagnosed with stage IV metastatic breast cancer that had spread to my lungs, liver, and other places in my body. As a working mother, I had to not just survive but continue with my life as best I could during treatment.
I reached out the American Cancer Society for support and embarked on learning everything I could about breast cancer and its care. As I went through treatment, I began to notice other women of color (WOC) coming to me to ask how I was managing so well and how I was seeming to grasp what standards of treatment I should expect and how to self-advocate for myself. I steadily realized how many WOC struggle to receive proper care quality or to even know what questions to ask in order to ensure that they do.
With support of knowledgeable practitioners, administrators, policy and management professionals, I established The Chrysalis Initiative (as a nonprofit, 501c3) to address breast cancer disparities and breast health inequities using patient activation and empowerment, provider education, and barrier intervention to reduce the impact of disparities in breast cancer outcomes. As Founder and CEO, I have been able to build TCI into a successful organization that addresses individual and institutional knowledge, attitudes, and behaviors that impact health outcomes for these underserved and under-resourced WOC with breast cancer.
Jamil , before we move on to more of these sorts of questions, can you take some time to bring our readers up to speed on you and what you do?
My experience as a young woman having to travel the breast cancer journey while others were depending on me to keep up my daily routine, and other patients were coming to me for guidance, taught me how effective peer-to-peer counseling can be. The core of our initiative is our 150-some trained, experienced WOC coaches who have experienced breast cancer and who help patients to get the right care and manage their experience as positively and effectively, and with the least amount of stress, possible. We match WOC one to one with these coaches to help educate them and monitor their course.
We are the only organization in the country focused exclusively on countering the conscious and unconscious bias that these women face in getting adequate care. The racial-based gaps and shortcomings in care that they are subject to are well-established and something that, today, health systems and hospital sincerely want to correct. And so, they value too the other arm of our services, which is the care equity assessment/audit that we conduct in collaboration with breast cancer centers. We talk to staff and patients, review records, and point out places to correct and prevent implicit and explicit discrimination in care. This results in lasting improvements in the care delivered to these women.
How’d you build such a strong reputation within your market?
We are women of color patients advocating for women of color patients. Our legitimacy as activists looking to dispel disparities in healthcare comes from who we are, what we’ve experienced, the thousands of women we have helped, and the providers collaborating with us at some of the best cancer centers in the country.
All of our patient navigators have been there. They know what minority women can encounter, often without them or even their providers knowing that discriminatory care is happening.
The healthcare staffs we work with also see that we consult with them cooperatively and in an evidence-based way. They appreciate having a knowledgeable, independent, objective party review their performance in equity and, for the most part, they want to make corrections as we consult with them about improvements they can make.
Our interventions are seen as innovative in this space, including use of a mobile support app that we have developed and launched for use by all our coached patients. This gives us feedback we can share in addition to other information we gather directly, and it makes patients feel that our support is with them, in the palm of their hands, at all times, also allowing them to share reviews of care providers with one another.
How did you put together the initial capital you needed to start?
Now is the time for an organization such as ours. With broad acknowledgement of racial issues, including in healthcare, the momentum to fix things and make care color blind is here. Both industry and private funders want to be part of the solution, and cancer centers want to work with us. Interest is keen from foundations and pharmaceutical grant sources to show that they have underwritten the pioneering model that we are offering in the interest of women who want to regain their health and maintain their lives. Pharma funders especially appreciate the success we’ve had in interesting women of color in taking advantage of clinical trials of new advances in care. Access to experimental treatments is a indication of highest-level care going on.
We are very data drive and can show our results in getting full and appropriate care for women of color with breast cancer (and also now for patients with lung and ovarian cancer). Our strong case and our supporters have blessed us now with a multi-million-dollar budget to go after this problem.
One of the most gratifying things is confirming that our patients report fewer encounters along the way that they perceive as influenced by racism. Meanwhile, we’re helping them to not just survive but to go on to thrive.
Contact Info:
- Website: https://thechrysalisinitiative.org
- Instagram: https://www.instagram.com/chrysalisinitiative/
- Facebook: https://www.facebook.com/chrysalisinitiative/
- Linkedin: https://www.linkedin.com/company/chrysalis-initiative/
- Twitter: https://twitter.com/chrysalisinit