As someone living with metastatic breast cancer, Alexis Desai wants to see less pink and more action to highlight the urgency of ending breast cancer.
“Exploring and navigating this healthcare system that too often abandons women like me… I wouldn’t wish this upon my worst enemy,” Alexis said. “Nobody should have to choose between putting a roof over their head and treatment that’s just to keep them alive. I’m living proof of what happens when our system prioritizes profit over patients.”
In 2023, Alexis was diagnosed with metastatic breast cancer at age 37. Alexis continued to work as a teacher as long as she could, but when she became too sick, she had to medically retire.
Now, two years into her diagnosis, she is dealing with financial toxicity that included selling her house to help pay for medical treatment. Despite this, she’s in medical debt while waiting to receive her Medicare benefits. As Alexis describes it: “It’s a full-time job to have cancer.”
This shouldn’t be happening to Alexis or anybody with breast cancer. That’s why one of NBCC’s top priorities is to pass the Metastatic Breast Cancer Access to Care Act, a bill that would waive arbitrary Social Security Disability Insurance benefits and Medicare waiting periods for eligible individuals with metastatic breast cancer.
As an NBCC advocate, Alexis went to Capitol Hill to tell her personal story to members of Congress and their staff to urge them to pass this crucial legislation.
“Women are dying and that’s why we need to pass this bill,” she said. “They’re dying before they’re even able to receive the care they [already] qualify for. The financial toxicity is real, and these barriers add onto how harsh and devastating this disease already is… [This bill] is common sense and it wouldn’t make people choose between treatment or medical bills.”
And during a time when federally funded research is being cut nationwide, it’s more important than ever to protect science. As part of her treatment plan, Alexis is on a CDK4/6 inhibitor—a drug first studied for breast cancer through funding from the Department of Defense Breast Cancer Research Program, which exists and thrives today thanks to NBCC’s tireless advocacy.
“Funding the research is so important just so we could live a little bit longer,” she said.
Like many people living with breast cancer, this is not what Alexis envisioned for herself, but her advocacy gives her hope for a future without breast cancer.
“Breast cancer advocacy to me isn’t abstract – it’s personal and urgent,” Alexis said. “I’m fighting for myself and the women before me who no longer have a voice who succumbed to this disease, and the women after me when I succumb to this disease, and the women I know now. Demanding change helps me feel like I’m doing what I can with this disease and these burdens.”
Advocates like Alexis are why NBCC works to ensure that we prioritize action to end breast cancer. They highlight the reality of this moment in history where breast cancer remains an urgent issue. Join us in taking action to end this disease.
