At a recent visit to the University of South Florida ALS Clinic — amid appointments with neurologists, respiratory therapists and more — Leigh Hotle worked with her social worker to nail down a date for her next peer support group meeting.
“Addison will be six that day,” Hotle tells Heran Sisay about the next scheduled meeting. “It's her birthday party. She'll be six and we'll be partying it up."
Aside from frequent pauses to take a deep breath though her ventilator, Hotle doesn't sound like someone you'd expect to have ALS, or Lou Gehrig's disease. She's having a good day today, one that allows her to speak matter-of-factly about her situation:
"I was like really devastated, because you hear two to five years and you're like 'Oh my gosh. Like how could this happen?'"
In the three years since her diagnosis, she's gone from an active first-grade teacher, to getting around in a motorized wheelchair. She can't move anything except her head, and the tiniest wiggle of her toes. Her hands sit still on her lap.
The neurodegenerative disease affects nerve cells in the brain and the spinal cord. People eventually lose the ability to speak, eat, move and breathe over time, eventually dying.
And this year, her clinic - which sees about 300 patients annually – is dealing with another budget cut from the state. When Florida lawmakers passed the state budget in March, it cut $250,000 for clinics that care for patients with ALS, or amyotrophic lateral sclerosis.
"We don't want to cut down on the number of clinic visits that we have,” said Dr. Clifton Gooch, Chair of the Department of Neurology in the USF Health Morsani College of Medicine and co-director of the USF Health ALS Center. “We obviously care very much for our patients. We want them to get the best possible care and be seen with the greatest frequency. We may be facing some difficult choices in this regard.”
“Unfortunately, the way our current healthcare system is structured, it does not pay for all of the components of care necessary through insurance or Medicare and Medicaid.”
Gooch plans to visit Washington D.C. later this month alongside the ALS Association to appeal to federal lawmakers for funding.
“However, it is unlikely at that level, given the initiatives that are being developed there right now, that that money will trickle down for this particular purpose of paying direct care for ALS patients in the delta that's required to keep the multidisciplinary clinics going,” Gooch said. “It’s a conundrum.”
Gooch’s clinic is losing about $65,000 compared to what they got from last year’s state budget -- about a 50 percent cut. The money helps pay for things Medicare and Medicaid don't fully reimburse for, such as health care navigators, social workers, peer support groups and sometimes equipment.
The Florida Legislature passed the Bitner/Plante Amyotrophic Lateral Sclerosis Initiative of Florida during the 2013 session to provide the first million dollars to help four clinics, including the one at USF, expand their services.
The other three are located at the University of Miami, University of Florida Shands in Jacksonville, and the Mayo Clinic Jacksonville.
Each year, the state has allocated less money to this fund.
And each year, the clinics face more challenges to provide care from multiple doctors and therapists under one roof.
"Here you see every doctor that you need to see on the list. If I didn't, then I’d have to drive here for a dietitian, I’d have to drive there for physical therapist. I’d have drive here for the speech,” Hotle said.
Her husband, Jason, is her primary caretaker, but he also works full-time. Hotle said having all her care in one place, facilitated by one clinic, keeps him from missing too much work.
And the care the clinic provides extends to Hotle's home. Her social worker helped her get a wheelchair, and modifications to their van and house.
"Out of everyone besides the doctor , she's probably been one of the biggest helps there is,” Hotle said.
She's even helped facilitate recordings of Hotle's voice before she loses the ability to speak.
That will allow Hotle, to use an eye movement-controlled computer to help her talk to her husband and daughter in her own voice.
"It sounds like you,” Hotle said. “So if I want to yell at my husband ‘Jason!’ It will sound like you. It will actually have my voice. They also have voice banking so if I have a favorite book to read to my daughter, or a thing I always say, you can record it and put the files on your computer.”
While the cost of care for ALS patients varies, it can cost about $1,300 for a single visit to a clinic, not counting specialty equipment. Hotle only comes every two or three months, but as the disease progresses, those visits will become a lot more frequent.
Hotle has insurance through her husband's employer, and Medicare. But she still has to pay some out of pocket expenses, and so does the clinic.
The director of this clinic, Dr. Tuan Vu, said they’re working with private donors and groups like the ALS Association to recoup the funding they’ve lost.
Vu says when the money is not available, certain programs like peer support groups, and positions like coordinators, social workers and navigators are the first to go.
"To negotiate the medical landscape without a navigator its extremely difficult for families and patients who are in need of various components of care: respiratory equipment, tube feeding, medications, pain relief - all of that,” Vu said.
Raul Alsina, the assistant clinic coordinator, is one of many USF ALS Clinic employees writing grant requests and researching new funding avenues.
“It’s a very sobering experience,” said Alsina, who will be starting medical school soon. “I think anyone who's looking to get into the medical field can relate to this idea of wanting to be essentially a superhero going in and solving problems.”
“You go into research thinking that you're going to find the next cure for any number of terrible diseases. But that takes money, that takes resources, that takes time.”
When it comes to her future, Leigh tries not to focus on the progressive decline of her body. It's hard to say how long it'll take to lose all movement, and her ability to talk. For now, she's focusing on her 6-year-old daughter, Addison, and creating video messages to outlive her.
“They’re for her wedding day, or things that like, prom or graduation or, you know, little things,” Hotle said. “It doesn't have to be a big video but enough to show her like I was there. I cared.”
Hotle said she'll let the researchers and doctors worry about funding cuts. The only thing on her mind is helping her daughter celebrate as many birthdays as possible - one year at a time.
