Non-profit Libby's Legacy advocates for patients and their families
Robin Maynard-Harris was working as an Orange County crime scene investigator when her mother was diagnosed with breast cancer in 2005. “Obviously, I was upset, but I just thought she was going to have a double mastectomy and chemo and she was going to live for another 25 years because that’s what both my grandmothers did before her,” Maynard-Harris recalls.
That’s not what happened. Her mother underwent a double mastectomy and chemo and just as she was finishing up her treatment, they discovered the cancer had returned. A doctor predicted she’d live three to five years. She died six weeks later.
In the aftermath of her loss, Maynard-Harris launched a nonprofit called Libby’s Legacy to honor her mother and advocate for others battling breast cancer. She says she spent time on the phone talking to the insurance company “that I would have rather spent with my mom. So I started a foundation to make sure I could do that for other moms, others kids and make sure families could spend time together — let us battle that red tape and let us advocate for them,” says Maynard-Harris.
The 15-year-old group does much of that work through its Patient Advocate Liaison Service (PALS), which helps patients navigate the health care system. Each patient gets an assigned coach who accompanies the patient to medical appointments, takes notes and makes sure their questions get answered. Libby’s Legacy also provides patients who qualify (those at 200% of the poverty level) with access to mammograms and other needed follow-up care, such as MRIs, ultrasounds and biopsies. “We’re not going to leave somebody with a lump, knowing they have a problem and no place to turn. We pay for everything up to diagnosis and then we partner and collaborate with great partners like Orlando Health for treatment,” Maynard-Harris says.
To date, the organization has provided more than 10,000 free breast health services to individuals in 26 of Florida’s 67 counties; 230 Floridians have been diagnosed with breast cancer in the process. Many are like the first patient that Libby’s Legacy helped to get diagnosed — a temp with Orange County who made $25,000 a year. “She made too much for Medicaid and not enough for health insurance, and absolutely no one would help her,” Maynard- Harris recalls.
In 2009, after completing work on the infamous Caylee Anthony case, Maynard-Harris left her CSI career to focus on Libby’s Legacy full time. “When we diagnose somebody, I count how many children they have because it matters to me that much,” she says. The count now stands at 343 people who still have their moms around. “That’s the payday. The text you get on Mother’s Day or a graduation or a childbirth that someone gets to be a part of because we were able to help change and save lives, there is no greater payout than that.”
Read more in Florida Trend's October issue.
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