Patient advocate Jamil Rivers leads women of color to better breast cancer care
During her time in treatment, Rivers, who is Black, also discovered that many women, particularly Black women and other women of color, were in urgent need of guidance.
In the winter of 2017 in the Philadelphia suburb of Drexel Hill, a seemingly ordinary bug made its way through the Rivers family: first Jamil, followed by her husband Ricky, and their three sons, who had just started school in Drexel Hill that fall.
“I just kept coughing and hacking,” she recalls. “I went to my primary doctor, who prescribed me an antibiotic initially. I asked my doctor for a chest scan and an ultrasound of my abdomen, because the pain in my side was making me a little concerned.”
Jamil Rivers with two of her three children. (Image: Penn Medicine News)
“Once cancer has metastasized, it is considered incurable but treatable,” says Hayley Knollman,an oncologist with Penn Medicine’s Rena Rowan Breast Center in the Abramson Cancer Center, who treated Rivers after the diagnosis. “She was treated up front with chemotherapy because her liver function was abnormal. The cancer had completely infiltrated her liver.”
For 10 months, Rivers left work early every Friday to attend chemotherapy sessions. Rivers later transitioned to more targeted and less toxic therapies, including estrogen blockers. Today, with her cancer under control thanks to regular medication and doctor visits, Rivers, now 44, remains a full-time working mom—and then some.
She shared her knowledge; they shared their own. Rivers saw a need so acute that she decided to commit herself to patient advocacy, ultimately founding The Chrysalis Initiative, which offers patient coaching, training for care providers, and other resources to reduce disparities in breast cancer outcomes.
“Sometimes Black women are not offered the highest standard of care,” Rivers says. “And sometimes it’s because of avoidable problems like incomplete workups. So we’re trying to help them understand what to anticipate, what questions to ask, and how to be advocates for themselves.”
The Chrysalis Initiative currently helps about 10,000 patients. A total of 95% of women who receive coaching through the initiative reported improved health literacy, with 60% reporting a greater likelihood to participate in clinical trials for breast cancer, where women of color are traditionally underrepresented. Penn’s Abramson Cancer Center has also led initiatives to encourage Black cancer patients to enroll in clinical trials.
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