Researchers say in 10 to 20 years, the United States will face an epidemic, all having to do with the brain, spinal cord and nerves.
Clifton Gooch is the chair of the neurology department at the University of South Florida College of Medicine. Gooch co-authored a new study that found the nine most common neurological diseases cost almost $800 billion every year in the United States.
Those costs include direct medical expenses, such as prescriptions, memory care and nursing homes, and in-home assistance, in addition to other indirect factors. For instance, victims and their caregivers are often forced to quit working. “Nearly 50 percent of the total health burden in the United States is due to morbidity and disability. This is particularly true of neurological disorders, and the years lost to disability from neurological and musculoskeletal disorders is greater than that of all other categories of disease,” the report explains.
Researchers looked at the costs of stroke, dementia, low back pain, traumatic brain injury, migraine headache, epilepsy, multiple sclerosis, spinal cord injury and Parkinson’s disease.
“Neurological disease is growing as the population ages,” Gooch said.
Neurological diseases are more common in older people, and the elderly population will double by 2050.
Heart disease and cancer research has led to “remarkable therapeutic benefits” during the past few decades, the report says. That’s increased overall health, helping people live longer. At the same time, similar investments haven’t been made in neurological disorders.
“Ironically, the burgeoning number of elderly citizens resulting from decreases in the mortality of cardiovascular disease and cancer is producing unprecedented numbers of people affected by neurological disease,” the report explains.
Nearly 100 million Americans suffered from one of the more than 1,000 neurological diseases as of 2011.
Those numbers are growing, and researchers anticipate that epidemic of these diseases.
Gooch and his co-authors wanted to identify a cost figure to fight for funding. “The cost was actually stunning when we calculated it,” Gooch said.
“We really wanted to provide a roadmap to legislators and others of what the country will be facing unless steps are taken now,” Gooch said. We need a “sustained high level of research investment over many years,” he added. Neurological diseases haven’t received the same funding as cancer and heart disease.
“Anyone who has been touched by neurological disease … understands the tragedy and the burden,” Gooch said.
Researchers and doctors ultimately want to find a cure. But, for now, they are focused on research that could delay the onset of neurological diseases. Delaying the onset of Alzheimer’s by five years would eliminate half the cases, Gooch said. Delaying the onset by 10 years would eliminate 75 percent of cases.
“Funding is what’s going to fuel the fires to make this take flight,” Gooch said.
The issue is foremost on Brooks Gentry’s mind. The Pinellas County lawyer is his mother’s primary caregiver. His mom, Betty Gentry, received a diagnosis in 2008. As they left her diagnostic appointment, Gentry was told his mother could no longer live alone. Gentry’s dad George passed away in 1996.
“The cost of the disease is astronomical,” Gentry said. He initially thought his mother’s assets would sustain her care – but realized they wouldn’t go very far.
For one thing, memory care costs much more than regular assisted living. Traditional nursing homes aren’t well-suited for people with dementia, Gentry said.
“That $300,000 actually disappeared very, very quickly,” Gentry said.
Betty was 73 when she was diagnosed. “She seemed quite young … She was still fiercely independent or at least thought she was,” Gentry said. “The diagnosis of mom’s Alzheimer’s was shocking.”
Betty previously worked as a nurse and was enjoying her retirement. She performed missionary work in Africa for 25 years, and Gentry believes she would’ve spent even more time there caring for widows and orphans.
“Mom was awesome. She was my number one fan, a great mom, a great wife, a great friend, very compassionate, empathetic, really put other people before herself and liked to take care of people, very great sense of humor, funny and jovial,” Gentry said.
Alzheimer’s and other neurological diseases often play out for decades, meaning people may suffer for years. “The longer your loved one is with us because you give them really good care, the more expensive it proves to be,” Gentry said. “How do we financially sustain this higher quality of life that we have now been likely to give our loved one?”
Caregivers are worrying about these costs while watching horrible diseases wreak havoc.
“It’s heartbreaking because you know that’s not her. You know that it’s the disease doing what the disease does,” Gentry said. “No matter what I’ve done, I’m still not going to win … No matter how hard I fight for her quality of life, the disease is going to win.”
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