Increased funding helps provide much-needed coordinated care to ALS patients and families across Florida. Access to care truly made a difference to Billie Jean Fogle. 

There’s no cure for the debilitating terminal disease known as Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease), but access to comprehensive ALS care extends and improves patient’s lives, and also enhances the lives of their families. To help residents throughout Florida gain access to this care, the Florida Legislature passed the Bitner/Plante Amyotrophic Lateral Sclerosis Initiative of Florida during the 2013 session to provide $1 million to greatly expand services at those Florida clinics offering the highest level of comprehensive ALS Care.

ALS patient Billie Jean Fogle (left), was relieved to have access to personalized, comprehensive care, said her daughter Teresa Zeller (right). Photo courtesy of Teresa Zeller.

“This is a direct benefit to the patients and their families,” said Clifton Gooch, MD, professor and chair of the USF Health Department of Neurology and an ALS specialist. “Research has proven that a multidisciplinary approach to care prolongs the lives of ALS patients and improves the quality of their lives. However, the barrier for most ALS patient is access to that care, as our current medical system does not provide coverage for many of the key components of this treatment.”

The funding allowed the USF Health ALS Center, which opened October 2011, to double the number of patient appointments and to significantly shorten the patient wait list. The funding also allowed for similar expansions at the other comprehensive ALS centers sites in Florida, including the University of Miami, University of Florida Shands in Jacksonville, and the Mayo Clinic Jacksonville.

To help disperse care even further across Florida, the initiative is also pioneering a telemedicine component, using technology to provide visual interaction for patients with the many providers necessary to treat their disease.

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

“The telemedicine component means that even ALS patients living in rural areas who can’t make it to one of the centers for their many appointments can now be monitored and treated between face-to-face clinic visits,” Dr. Gooch said.

The initiative will also facilitate more research toward improved treatment by increasing the number of patients enrolling in clinical trials.

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Teaming up makes the difference to ALS patients
ALS is a deadly disease that progressively paralyzes its victims, attacking nerve cells and pathways in the brain and spinal cord. Patients are robbed of the ability to walk, eat, speak and, eventually, breathe. Most live for just two to five years after diagnosis.

ALS patients require care from many specialists, including neurologists, speech therapists, physical therapists, respiratory therapists, nutritionists, and psychologists, among others. Coordinating the care within a single multidisciplinary team visit ensures patients will receive all the care that they need in a coordinated fashion. It also 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.

“A comprehensive multidisciplinary center provides under one roof all of the services ALS patients require, and that makes the biggest difference in the life of an ALS patient,” said Tuan Vu, MD, professor of neurology and director of the USF Health ALS Center.

“Funding allows us to bridge the access gap and provide much needed care for ALS patients,” Tuan Vu, director of the USF Health ALS Center.

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How big of a difference?
There was about three years between a diagnosis of ALS and death for Billie Jean Fogle.

But that short time was made much more comfortable – and maybe even prolonged – because of the ALS Center at USF Health, said Fogle’s daughter Teresa Zeller.

“Finding the USF Health ALS Center was wonderful,” Zeller said. “Traveling is so hard, nearly impossible really.”

Zeller said her mother connected with USF in April 2011 and was greatly relieved to have such personalized care.

“The biggest blessing for Mom was that the team was all there at one appointment, all of them in one room. They would go in and out of the room to talk to us, we didn’t move from specialist to specialist. It was a long morning for Mom but so much better than another clinic we visited. It was all in one place, but we were the ones who had to move within the building.”

The team approach is what really made the difference, Zeller said.

“They all worked together, instead of piecing together her care,” she said. “And the support staff really helped us follow up on the orders that came out of her appointments. We didn’t have a moment to make five phone calls to look into her respiratory therapy. They told us exactly who to contact.”

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Building an initiative to improve access to ALS care
The impetus for seeking funding came when Wendy Bitner toured the USF Health ALS Center through the ALS Association’s Hope and Help Tours. Her husband, Florida State Rep. David Bitner, had recently died of ALS in September 2011.

When she asked how she could help, Dr. Gooch described the difficulty the Center has in securing funding every year and that the current annual funding allowed for a limited number of appointments for ALS patients. Bitner, together with Dr. Gooch and members of the ALS Association, framed a proposal for $1 million that would not only expand the ability of USF Health’s ALS Center to take additional patients but would also fund expansions at three additional centers across the state to help increase access to treatment and support for ALS patients throughout Florida.

David Bitner was highly regarded and his colleagues in Tallahassee did not hesitate to help shepherd the proposal through. The proposal was approved by the Florida Legislature in Spring 2013.

ALSA is administering the project and collecting data on the number of patients being seen at the four clinics.

Administration of the Initiative is unique: there is no single person charged with directing the Initiative, but a group of ALS experts from each of the centers instead guides the program.

“We are very democratic, and have created this round table approach, so that everyone has equal input,” Dr. Gooch said. “We all want to work together in an equitable way and avoid problems that come from decisions being based at one facility over another.”

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Looking ahead
The hope, Dr. Gooch said, is that state elected officials will see the value in this and help grow the funding.

“We need to keep all of these centers open and running and spread these benefits all over the state,” Dr. Gooch said. “The academic comprehensive ALS centers participating in this initiative are unique because they are able to provide the highest level of expertise and the most comprehensive levels of care. ALS operations of this kind take years to develop and rely heavily on the resources and infrastructure of the academic medical center, which is why there are a limited number of centers.”

But continued funding will mean continued access to care and an increase in research opportunities, he added.

“The patient-care side of these ALS centers is only part of the operation,” Dr. Gooch said. “There is also a great deal of translational research, offering patients everywhere hope for a cure.”

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How you can help
One way you can help is to join the local Walk to Defeat ALS, set for 9:30 a.m. Saturday, March 8, 2014. Click here for more information.

Dr. Clifton Gooch addressing supporters at the annual ALS Walk.