Nearly 800,000 Americans have strokes each year and about 100,000 are left with serious problems communicating, a condition known as aphasia. Research has demonstrated that with therapy, many of these patients can talk and understand language again. But the process can be slow and expensive.
A new study from the Medical University of South Carolina tallies at least part of that expense by examining Medicare payments to thousands of stroke patients. The study found that people with aphasia tend to be older and sicker than other stroke patients, requiring hospital stays that are on average 6.5 percent longer and Medicare payments that are 8.5 percent higher.
But despite their greater needs, Medicare caps payments for speech and physical therapy after a stroke at less than $1,900. Most private insurance also has strict limits for such rehabilitation.
In light of growing evidence that recovery can continue for some time after the stroke, that philosophy should be reconsidered, says the lead author of the new study, published recently in Stroke: Journal of the American Heart Association.
Without adequate treatment, patients and families suffer "substantial limitations in life participation," said Charles Ellis Jr., associate professor at Medical University of South Carolina.
Lisa Edmonds, an aphasia researcher at the University of Florida, says some patients continue to make gains for years. "The improvement may not be as steep as it is in the first year but there is the capacity to continue improving. Some for three, five years after," she said.
But the insurance limits also mean that fewer health facilities offer the kind of intensive therapy these patients need, so it may not be available even to those willing to pay cash for it.
Mollie Middlebrook scoured the country looking for additional speech therapy for her husband Charlie, 66, after he suffered a stroke just over a year ago.
"After three or four months of therapy at home, they said he had plateaued," she said. But she read research reports suggesting more therapy could help. "I wanted intensive therapy before his first year was up, so he could get the most out of it."
Their search brought the Houston couple to the Aphasia Center in St. Petersburg. Mrs. Middlebrook chose the program in part because treatment would be tailored to her husband's specific needs "and because of the weather," she said. Similar programs she found are in Michigan and Illinois.
The Middlebrooks paid $15,000 for four weeks of intensive therapy—five hours of daily sessions, Monday through Friday, including one-on-one time with therapists, group and computer work.
"We were blown away with the success of it," said Mrs. Middlebrook during a January visit to the center. "He is speaking in fuller, more accurate sentences, using more words than before, he can string together four or five sentences. He couldn't do that before we came."
But Mr. Middlebrook's frustration that he wasn't progressing even more was palpable.
The retired pastor, educator and author holds a doctoral degree in biblical studies, yet his wife says that since the stroke sometimes he can't recall the names of his grandchildren. On the last day of his January visit to the Aphasia Center, he couldn't recall certain words or answer a reporter's questions fully.
"I just can't say it. I'm not dumb about it," he said.
But he had no difficulty finding the words to say grace before lunch.
How much can patients expect to recover by undergoing additional therapy when insurance coverage runs out? It varies, but Edmonds said if you still have symptoms a year after a stroke, you likely won't return to your pre-stroke ability to communicate — though smaller improvements are possible.
Mrs. Middlebrook said the time and money spent were worthwhile. Although Mr. Middlebrook has been in treatment for cancer, he sounded strong in a brief phone conversation on Wednesday.
Edmonds said that most patients and their families are grateful for even incremental improvements. Returning to a high stress, complicated job may not be in the cards, but a satisfying life is still within reach — if they can adjust expectations.
"People can live normal lives with aphasia," said Edmonds, "But the way they live might change."
Irene Maher may be reached at [email protected]