The Florida Legislature has again cut funding in half this year for the Bitner Plante ALS Clinic Initiative of Florida, providing just $250,000 to ALS clinics around the state that provide patients with comprehensive ALS care. The Bitner Plante ALS Clinic Initiative is funded by The State of Florida Department of Health and this dramatic cut puts ALS clinics in jeopardy of the ability to provide the critical care needed by people living with ALS in Florida.
What started out as $1M in original funding in 2013, the Bitner Plante ALS Clinic Initiative provided the necessary resources to expand the services of Florida clinics offering the highest level of comprehensive multidisciplinary ALS care, allowing some clinics to double the number of patients seen. Continued support enables clinics to maintain this crucial service. Since 2013, the state has dramatically decreased its engagement with the ALS community, dropping funds to $500,000 for 2016 and 2017, and dropping yet again in 2018 to just $250,000.
"The ALS clinics are very labor intensive. We count on the additional revenue to support the extra clinic days and may be in jeopardy of having to eliminate the extra clinic days given the drop in funding," said Dr. Michael Pulley, Director of the UF Health Jacksonville Multidisciplinary ALS Center. "In our case, the extra funding allowed the addition of an afternoon clinic which we have used for patients who live farther away, making morning clinics very difficult."
"We depend on all of our caretakers. Having everything in one spot really makes a difference for the people caring for people living with this disease. If they cut the funding, I guarantee you people like me won't get to see the doctors and specialists we need to see on a regular basis. People will fall out from treatments they need to live. It is definitely important for it to get out there about the funding. There's a lot of patients that go to clinic and depend on it. I can’t imagine it not being there. Where would they go?"
- Leigh Hotle, Person living with ALS and patient at the ALS Center of Excellence at USF
LEARN MORE about Leigh and her personal journey with ALS.
With more than 1,600 people living with ALS in Florida alone, there is a critical need to not only maintain, but increase the current capacity of Florida's ALS multidisciplinary clinics to provide care to more patients. Even though ALS is still currently incurable, studies show that patients who attend an ALS multidisciplinary clinic experience an improved quality of life and extend life by almost a year, sometimes longer.
"At least for us, I think there is a real RISK that we will need to reduce services - either clinic days or spectrum of specialists available," says Dr. Michael Benatar, Director of the University of Miami Kessenich Family ALS Center of Excellence. "I agree with what Michael said. Also, we use the funding to pay for services not reimbursable by third party payers (dietitian, orders and care organization done in between clinic)," said Dr. Tuan Vu, Director of the ALS Center of Excellence at USF. "We also use the funding to provide care to patients who have no insurance coverage."
People living with ALS in Florida need your help. Continuation of the Bitner Plante ALS Clinic Initiative funding is critical for people living with Lou Gehrig’s disease in Florida. Financial support of our ALS multidisciplinary centers is essential to the future of critical care needed by people living with ALS in our state. And you can make a difference by getting involved. Join us and help to advocate for the ALS community, contact your state representatives or please GIVE NOW.