When Jo Lynn Collins completed Project LEAD in 2024, she asked, with skepticism, how she – while living with metastatic breast cancer – would be able to make a difference.
“What I want to leave behind or what I want others to remember me for is being able to work with organizations like NBCC and advocates who are making change,” Jo Lynn said.
Since then, every concern about her ability to make an impact has been resolved, and her work with NBCC has fueled her fire to fight for an end to breast cancer.
Like many people living with metastatic disease, her journey as an advocate hasn’t been easy and stemmed from a sense of urgency. Six years ago, at 47 years old, Jo Lynn was diagnosed with metastatic breast cancer. Members of the metastatic community guided her to NBCC.
“There’s no other organization that offers such a thorough training for patient advocates,” she said. “Whether it’s research or legislative [advocacy], you feel empowered to use what you know in those spaces as well as yourself as a patient.”
Using her story and her NBCC advocacy skills, Jo Lynn recently secured U.S. Rep. Carol Miller (R-WV-01), a crucial member of the Ways and Means Committee, as a new cosponsor of the Metastatic Breast Cancer Access to Care Act. The bipartisan bill would remove the waiting periods for Medicare and Social Security benefits that metastatic breast cancer patients are entitled to. Tragically, many patients die waiting for benefits they are entitled to due to these waiting periods.
“It makes me feel validated when… we share our experiences and highlight some of the challenges and how we can resolve that— and then they come back and agree to your ask,” Jo Lynn said. “That is so affirming that we’re being seen and heard.”
Her experience, she says, highlighted how she wants to ensure the focus stays on the voice and the power of NBCC and its advocates.
“Sometimes as metastatic patients, we’re left out of the conversations and not considered despite us being the portion of breast cancer patients who are dying from [the disease],” she said. “What sets NBCC apart is that they give us a seat at the table… they have done a wonderful job working with me to get involved and advocate.”
Jo Lynn’s story echoes the urgency of NBCC’s work to end breast cancer. Recent cuts to healthcare harm people like Jo Lynn. Now more than ever, we must act.
Breast cancer doesn’t wait, and neither do we. Fuel our fire and join us in our movement to end breast cancer today.
