Breast Cancer Journey Inspires Advocacy for Healthcare Diversity: Jamil's Story
Stories@Gilead - February 23, 2022
When Jamil Rivers received a diagnosis of stage four metastatic breast cancer in 2018, she approached it as she did everything else in her life – with a laser-focused determination to understand everything it would entail.
The mother of three’s journey into breast cancer education began by drafting daily checklists as she navigated doctor’s appointments and medications. And as she sat through a year of chemotherapy sessions in the hospital, something unexpected occurred: Other women began approaching her, asking for advice.
“They would say, ‘Oh, you seem to be doing okay, can you share what you know?’” Jamil says.
At first, she was surprised at the attention she was getting. “I was so focused on helping myself,” she recalls. “It was just one day at a time, going to chemo, coming home, taking care of the kids and doing what I had to do. You never know who you're inspiring when you’re just putting one foot in front of the other.”
Breast Cancer Racial Disparities
As Jamil began sharing what she knew with other women through the checklist she created, its popularity grew. “I’m one of those Type A project management type people,” she laughs. “But I find most people aren’t like that – they are devastated and overwhelmed by their diagnosis, which is normal. I think sharing the information I had actually did help many people.”
But a troubling pattern emerged as she continued gathering information and speaking with more women – Black women were clearly being left behind in outreach, education, research and treatment. She points to one glaring statistic: Black women are dying of breast cancer at a significantly higher rate than White women.
“That was shocking to me,” she says.
Jamil knew something had to be done to combat the disparities. She adapted her lengthy checklist into a curriculum for women living with cancer and into a training program for healthcare providers. She then collaborated with Living Beyond Breast Cancer, the American Cancer Society and Susan G. Komen on projects utilizing the curriculum and training she developed. But even with that accomplishment, Jamil knew there was more that could be done.
“All of those programs were really successful, but they were one-and-done projects. I felt like the need is so great, maybe we should do this every day,” she says. A little more than a year after she was diagnosed, the Chrysalis Initiative was born.
Black Women and Breast Cancer Care
The breast cancer advocacy and education nonprofit aims to educate Black women about breast cancer and to fight racial disparities in treatment and research. In just a few years, the organization has made significant strides in changing the breast cancer landscape for its community.
Last year, the Chrysalis Initiative launched an app to help women navigate breast cancer diagnoses and treatment plans. Called BC Navi, it pairs Black women undergoing treatment with skilled coaches who help them create detailed treatment plans and track their progress.
The organization is also turning its focus to the myriad ways a breakdown of cancer care can occur for Black women. Through a grant from Gilead, it’s launching a short educational film called Erase the Line to educate people on the challenges that Black women face with care.
“We have this opportunity for people to see that what’s happening isn’t right,” she says. “I want to help everyone look critically at the way we interface with people of color in care and inspire a transformation.”