Funding continues for comprehensive ALS care across Florida

The Florida Legislature has renewed funding for the Bitner/Plante Amyotrophic Lateral Sclerosis Initiative of Florida, once again providing $1 million to ALS clinics around the state that provide patients with comprehensive ALS Care.

Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease) is a deadly disease that progressively paralyzes its victims. ALS patients require care from many specialists and coordinating the care within a single multidisciplinary team visit ensures they receive all they need. The coordinated visit also eases the burden on ALS patients and their families, sparing them from making dozens of trips to separate appointments to see many specialists over time.

“The Legislature stepped up to the plate and recognized the importance of access and the challenges faced by ALS patients,” said Clifton Gooch, MD, professor and chair of the USF Health Department of Neurology and an ALS specialist. “By continuing to fund these multidisciplinary centers, they made a path for patients and their families to get much needed coordinated care.”

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Dr. Clifton Gooch at the opening of the USF Health ALS Center in 2011.

The original funding in last year’s legislative session expanded the services of Florida clinics offering the highest level of comprehensive multidisciplinary ALS Care and included USF, University of Miami, University of Florida Shands in Jacksonville, and the Mayo Clinic Jacksonville. Last year’s funding allowed the USF clinic to double the number of patients seen by the USF ALS team and this year’s funding will enable that level of service to continue, Dr. Gooch said.

The original Bitner-Plante ALS Florida Initiative came about through the efforts of Wendy Bitner (widow of the late Florida GOP Chairman David Bitner, who died of ALS in September 2011), staff from the ALS Association Florida Chapter, and USF Health’s lobbyist Pamela Pfeifer, USF Health associate vice president of Government Relations.

“Pam Pfeifer with USF health worked diligently during the legislative session to help insure that the million in the Bitner/Plante ALS initiative remain funded at its current level,” said Bitner, who is a member of the ALS Association Florida Chapter’s board of directors.

Providing such comprehensive clinics is imperative for ALS patients, said Kim Hanna, president of the ALS Association Florida Chapter.

“Evidence shows that multidisciplinary clinic care can extend the life of an ALS patient,” Hanna said. “Continuation of the Bitner/Plante ALS initiative funding is critical for people living with Lou Gehrig’s disease in Florida.”

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ALS patients require care from many specialists. Coordinating the care within a single multidisciplinary team visit ensures patients will receive all the care that they need and is much easier on debilitated ALS patients and their families, sparing them from making dozens of trips to separate appointments to see many specialists over time.

Dr. Gooch agrees.

“ALS multidisciplinary clinics have been proven to extend patient survival by 30 percent or more, sometimes adding years of life,” Dr. Gooch said. “It’s also important not to underestimate the value of these face-to-face visits for patients and their families. The impact of the human touch is vital in treating ALS and the clinic itself also becomes a de facto support group, providing a real community and support for both patient and caregiver.”

Incidentally, Hanna noted, Florida is the only state to fund ALS Clinics.

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John Mingus happily greets his doctor Lara Katzin, MD.