I think this is one of those times when perseverance for a friend is appropriate. ALS struck Yankee great Lou Gehrig, Baseball’s Iron Horse; shocking and dismaying, it still burdens his name.
And, now, over 80 years later, Evan Yegelwel, our great friend, and our law partner, is batting against ALS. The disease has stolen his speech and his movement. He knows he won’t hit a homerun against the disease – ALS has never lost – but he’s at the plate and swinging for the fences anyway.
This week, Evan wrote a guest column for the Times Union to advocate for funding for the Bitner Plante ALS Initiative of Florida.
Restore funding for clinics that treat ALS patients
Guest column: Local attorney with ALS calls for restoring funding for clinics.
I am a 64-year-old attorney. Over eight years ago I was diagnosed with Amyotrophic Lateral Sclerosis, better known as Lou Gehrig’s Disease.
ALS is a progressive neurodegenerative disease affecting motor neurons in the brain and spine. It leads to progressive muscle weakness and eventually paralysis and death.
Eighty years since Gehrig’s death, there still is no prevention, treatment or cure. Most people with ALS live only three to five years from diagnosis.
This disease has robbed me of my ability to speak, walk or eat without choking. I am fortunate to have the love and support of family and friends. However, I am totally dependent on my wife and caregivers for my daily activities. My sources of communication are limited to my cell phone, iPad and computer.
Thanks in part to funding that the state makes possible through the Bitner Plante ALS Initiative of Florida, ALS patients in Jacksonville have access to two multidisciplinary ALS clinics — one at the Mayo Clinic of Florida and the other at the University of Florida, Jacksonville.
These clinics allow ALS patients to receive regular comprehensive care from a team of specialists at a single location on a single day. The team includes a neurologist, a specialized nurse, case manager, respiratory therapist, physical therapist, occupational therapist, speech therapist, dietician and social worker. A pulmonologist, gastroenterologist and psychologist are available if needed.
It is crucial that these hospitals are able to offer these services because every year about 1,600 Floridians are diagnosed with ALS.
Studies have clearly demonstrated that patients who attend a multidisciplinary ALS clinic: have 40 percent longer survival rates; benefit from an improved quality of life; receive a higher standard of evidence-based care; and receive more assistance in managing their activities of daily living.
In fact, multidisciplinary care is an independent predictor of survival. Patients attending these clinics had fewer hospital admissions and shorter inpatient stays than those who were cared for by a single provider.
Unfortunately, the state of Florida’s commitment to the Bitner Plante Initiative has waned. What started as an annual $1 million appropriation has dwindled to only $100,000 this fiscal year. Without more state funding, these clinics may be forced to reduce the number of clinic days they offer or deny services altogether to uninsured or underinsured ALS patients.
The Bitner-Plante ALS Initiative has additional benefits. The clinics help ALS patients remain independent longer. This delays the need for community-based or home based care provided by the Department of Elder Affairs. The program also lessens the burden on Medicaid, reduces the frequency of hospitalizations and, because care is fully coordinated, diminishes dependence on transportation programs for the medically needy.
Please join me in urging our legislators here in Jacksonville and throughout the state to do everything possible to restore $1 million in funding to the Bitner Plante ALS Initiative.
Evan Yegelwel is a member of the Florida ALS Association, North Florida Regional Council and an attorney at Terrell Hogan Yegelwel, PA.
He won’t ever give up and I am committed to helping him. It only takes a few minutes to let the legislators hear from you on this important issue. To help, click here.
“Evidence shows that multidisciplinary clinic care provides better quality of life and extends the life expectancy of a person living with ALS. Continuation of the Bitner/Plante ALS Initiative funding is critical for people living with Lou Gehrig’s disease in Florida.” Patti Stanco, Director of Advocacy, The ALS Association Florida Chapter