Carrying Moffitt’s Message to Tallahassee

Patients, Caregivers And Team Members Partner for Moffitt Day

By Ann Miller Baker

What could possibly be so important that 25 people would ride over 300 miles on their bicycles to share it? The same thing that draws another 50 people to board a predawn bus bound from Tampa to Tallahassee early each year during the annual state legislative session.

Moffitt Day in Tallahassee is an opportunity to “change hearts and minds,” explains one participant, “using cancer survivors and bicyclists.”

The 13th annual event was held at the State Capitol on Jan. 17, 2018. Moffitt leaders, physicians, researchers, team members, patients and their families made the trek to tell legislators firsthand what support of Moffitt Cancer Center means in the battle against this dreaded disease.

“Moffitt’s approach to cancer care has always been team-oriented, with everyone working together to provide the best treatment plans and outcomes for our patients,” Moffitt President and CEO Alan List, MD, commented during a Moffitt Day news conference in the Capitol rotunda. “We consider our governor and elected officials as part of that extended team. And we are asking for their continued support to help Moffitt realize the lasting scientific advances that are so important to the millions of Floridians battling cancer.”

Judging from two of those who made the trip this year, it’s a pretty fierce team.

RIDING FOR RESEARCH

Even the threat of snow and ice couldn’t keep the Cure on Wheels Capitol Riders from completing the final stage of their four-day trek. It was cool and breezy when they set off on their bicycles from the Moffitt campus on Sunday, Jan. 14. By the time those 25 riders arrived at the Capitol steps Wednesday morning, it was already snowing a few miles west in the Panhandle. Riding 300+ miles in inclement weather is just one measure of how tough and dedicated the riders are. Seven of this year’s participants are also cancer survivors, committed to sharing Moffitt’s role in returning them to a vital, healthy life.

Capitol Ride organizer Joshua Rivera was just 27 years old in 2007 when a mass collapsed the ureters between his kidneys and bladder. “I was 24 to 48 hours away from double renal failure,” Rivera recalls being told before being wheeled into emergency surgery in Tampa. Weeks later at Moffitt, he began a new and grueling standard-of-care protocol for Ewing soft cell sarcoma.

“I had treatment for 21 months,” says Rivera. “That’s 1,100 hours of chemotherapy, 23 radiation treatments, six surgeries.” Long enough to form close friendships with his Moffitt care team members including Dan Sullivan, MD, and nurse Cathy Elsner. Once treatment was complete, they recommended Rivera join Moffitt’s Patient and Family Advisory Council. And that’s where he met others involved in Cure on Wheels long-distance bicycling events to raise money and awareness for cancer research.

“When I joined Cure on Wheels in 2010, I knew how to ride a bike,” Rivera laughs. He knew he’d have to learn a lot more after his first Capitol Ride. On that first ride in 2010 Rivera was a support volunteer, driving alongside the riders headed for Tallahassee in a sponsor-donated SUV loaded with the group’s belongings. “These people were my friends – some of them cancer survivors in their 60s riding their bikes 300 miles. And I’m sitting in a Caddy with heated seats, wondering – what’s wrong with me? I promised myself that the next year I’d be on the bike for the Capitol Ride.” 

Now a Moffitt team member in the Revenue Cycle department, Rivera’s done five Capitol Rides and still gets emotional each time he pedals up to the Capitol steps. “The Capitol Ride is not so much about getting to Tallahassee. It’s about the camaraderie and the journey. It’s about everything that happened along the way – and obviously, everything that happened before that.”

Rivera shares his story with lawmakers on Moffitt Day in hopes of swaying hearts and minds. Often, he says, legislators are “blown away” to realize cancer can strike someone so young and healthy. Many, he says, are already willing to support Moffitt’s mission but don’t appreciate how funding facilities like research labs impacts patients. “I literally would not be here without clinical trials and research having been performed here,” says Rivera.

He wound up being the first Moffitt patient to complete that new standard-of-care protocol for Ewing sarcoma. “Having not just a statewide but also a worldwide cancer center of excellence in your backyard is amazing!”

“MOFFITT DIDN’T GIVE UP ON ME”

Every one of the Speak Out for Moffitt volunteers who boarded the early morning chartered bus to Tallahassee came with a story to tell lawmakers about their Moffitt experience. JuliAnn Finger of Seminole was ready for a broader audience, as part of the Moffitt Day news conference in the Capitol rotunda.

When diagnosed with stage 4 mantle cell lymphoma at a local hospital in 2007, she was new to the area. During her first hospitalization, she became sick with sepsis and lapsed into a coma for four days. Even after regaining consciousness, doctors gave her less than 90 days to live, saying she wasn’t strong enough to endure the chemo and stem cell transplant that held her only chance for survival. She and her husband were sent home with a business card for hospice services.

But the nurse in Finger wasn’t ready to give up. She tracked down the Moffitt hematologist whose input had helped the doctors arrive at her uncommon diagnosis. Within days, she was seen by Eduardo Sotomayor, MD, then director of the DeBartolo Family Personalized Medicine Institute at Moffitt. “He said, ‘I cannot promise you a cure,’” Finger recalled. “‘But I can promise I will walk through this with you and help you every step of the way. I can promise you hope.’ I left that office visit with tears in my eyes. Moffitt didn’t give up on me.”

Finger achieved remission from her cancer and was able to go through a stem cell transplant at Moffitt in April of 2009. In the years since she was diagnosed and told she might live just 90 days, she has welcomed six grandchildren into the world. Her husband, who served as JuliAnn’s primary caregiver through the transplant, came out of retirement and returned to school for a nursing degree. Both are currently providing nursing services through a skilled nursing facility.

“As a nurse, I didn’t specialize in oncology,” said Finger, “but I know quality, knowledge and passion when I see it.”

Concluding her news conference remarks, Finger reached out to former Florida Speaker of the House and cancer center founder H. Lee Moffitt with heartfelt thanks for seeing the need for a world-class cancer center in Florida 30 years ago. “One person’s initiative can change the world,” added Finger. “And because of you, countless lives have been saved.”

MOFFITT’S BEST “LOBBYISTS”

Moffitt Day and the interactions of our volunteers, patients, and staff have been critical to Moffitt’s success with legislators. Hearing personal stories about how Moffitt has changed lives is the best “lobbying” anyone could offer. Thanks to our tireless advocates, Moffitt has been able to grow its state support dramatically over the years.

One of the most rewarding endeavors was in 2012, when lawmakers increased Moffitt’s portion of the cigarette tax to help build the outpatient facility on the McKinley campus. Since it opened in November 2015, the six-story, 250,000-squarefoot facility has become home to many of Moffitt’s outpatient programs, freeing much-needed space on the hospital’s main campus less than a mile away on Magnolia Drive.

And the numbers show how well that’s working. Seventeen percent of all patients new to Moffitt start at the McKinley campus. Outpatient surgeries at both Magnolia and McKinley campuses jumped almost 17 percent from FY16 to FY17. Radiation Oncology and Radiology procedures also saw double-digit increases over the same time period.

Such growth is crucial if Moffitt is to fulfill a mandate written into the 1981 legislation that created the cancer center. It called for Moffitt to serve all of Florida. Continued state support will be needed, and that means Moffitt’s best “lobbyists” will be heading back to Tallahassee early in 2019.

Volunteer Finger says she’ll be ready to tell her story as often as necessary, paying it forward for future Moffitt patients.

“Moffitt gives hope to people like me who thought they might not have a chance,” she says. “What better reason could there be to support Moffitt?”