The ALS Center at the University of Miami will receive state funding through the Department of Health and the Florida Chapter of The ALS Association. These funds will help support multidisciplinary care for ALS patients. Led by UM neurologists with the Miller School’s Neuromuscular Division, the ALS Center is one of four Certified Centers of Excellence in the state that was allocated funds from the $800,000 in funding for the Bitner Plante ALS Initiative of Florida.
ALS centers in Florida that are home to specialized clinics face an enormous challenge each year: raising sufficient funds to provide patients with comprehensive multidisciplinary care irrespective of their ability to pay. These clinics provide comprehensive and coordinated care, providing patients with access to all of the necessary specialists and allied healthcare professionals. Funding is critical because health insurance simply does not adequately cover this level of care.
The Kessenich family multidisciplinary ALS clinic, housed within the ALS Center at the Miller School of Medicine, provides patients with the opportunity to see their specialists over several hours, in one place, all in one day. During a clinic visit, patients are evaluated by eight or nine providers of different specialties. This model of care eases the already heavy strain on patients and caregivers. At the end of the multidisciplinary clinic, specialists then come together to develop a coherent, integrated plan of care. This plan is implemented over the subsequent days to weeks, addressing the patients’ various needs and concerns.
“There’s no question it is the right way to provide care,” said Michael Benatar, M.D., Ph.D., Executive Director of the ALS Center at the University of Miami. “The multidisciplinary model improves quality of life for patients, prolongs their survival, and provides access to cutting-edge research.”
“We know that many people believe health insurance supports all the medical care an ALS patient may need. Unfortunately, that is not the case,” said Dr. Benatar. “We rely on support from many external, non-payer sources. It really takes a community to provide the quality care and resources we need, especially as we’re the largest center in the state.”
The Bitner Plante Initiative takes the lead to boost funding
It costs about three times above payer reimbursement to provide the necessary multidisciplinary care. That is why help from collaborative fundraising events, philanthropic support from individuals, associations and the key contributions of the Bitner Plante ALS Initiative of Florida play such an important role.
The Bitner Plante Initiative is a program developed by the Florida Chapter of the ALS Association in partnership with Wendy Bitner (widow of the late Florida GOP Chairman David Bitner, who died of ALS in September 2011). In 2014, the Bitner Plante Initiative took the lead to secure state funding and support ALSA Certified Centers of Excellence — including the ALS Center at the University of Miami.
For the 2020-2021 state budget year, the Bitner Plante funding increased to $800,000, to be distributed across the four Florida centers. “Ray Carson, president and CEO of the ALS Association, deserves a great deal of credit. He played a major role in re-invigorating the Bitner Plante Initiative,” said Dr. Benatar. Mr. Carson’s efforts, along with the strategic involvement of a lobbyist, helped gain support from key members of the Florida legislature.
Maintaining multidisciplinary care during COVID-19
Dr. Benatar noted that generous support from the state is especially essential during this time of COVID-19. It will allow the center to continue providing care for their ALS patient population at the level of quality they are accustomed to, despite adjustments to the way care is delivered.
“We’ve had to make profound changes because of COVID-19,” said Dr. Volkan Granit, medical director of the Kessenich family clinic. “The most significant one is moving the multidisciplinary aspect to a virtual environment. We must protect our patients, providers, and caregivers, who would all be in one room during a typical clinic day. That all changed and we had to move quickly to go virtual.”
The ALS Center has found solutions during the pandemic that have worked remarkably well. For instance, because breathing function tests require the patient to be seen in person, the center now sends patients to off-site pulmonary function labs to be safely tested.
One of the mandates from Bitner Plante was to form an initiative that develops greater telehealth capacity. UM virtual clinics provide patients with remote access to care providers. The plan post-COVID is to develop a hybrid model for patients who are too sick or live too far away to easily get to our center,” said Dr. Granit.
Funding fuels help for care and hope for a cure
At this time, ALS has no cure. Research is the key to progress. Dr. Benatar acknowledges that this is one of the primary reasons why patients are attracted to a large center like the one at the University of Miami. “About 90% of the patient population participates in some form of research here at the ALS Center,” he reported. “We need to continue to foster an environment where people can participate in those opportunities.”
Dr. Benatar further added; “Whether funds go toward the clinic or the research program, collectively they help us advance our mission to find a cure. This offers hope for patients and families coping with this disease. And that is what motivates and drives us.”
To learn more about multidisciplinary care at the ALS Center at the University of Miami, visit the website or call 305-243-7400.