ALS -- a bad break indeed: But Pa. can help its own budget by helping those with Lou Gehrig's disease
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Today I consider myself the luckiest man on the face of this earth," Lou Gehrig told a sold-out crowd of 62,000 fans at Yankee Stadium on July 4, 1939. "I might have been given a bad break, but I've got an awful lot to live for."
Few are alive today who heard the Iron Horse's moving words echo through the loudspeakers at Yankee Stadium as he publicly acknowledged the disease that would soon claim his life. But baseball's most famous farewell -- and the tragedy that inspired it -- live on.
The malady that has come to bear Gehrig's name, amyotrophic lateral sclerosis, is a progressive, fatal disease. Upon diagnosis, patients face the slow paralysis of their arms and legs, abdominal and back muscles and eventually lose the ability to swallow, eat, speak or even breathe. This wasting of the body occurs without any effect on the brain's cognitive ability. That's why ALS is often described as "the glass coffin." Most patients die within two to five years; less than 10 percent survive their diagnosis by a decade.
Seventy-three years after Lou Gehrig's famous speech, there's still no cure for ALS and treatment options are limited. Patients and their caregivers must rely on expensive equipment and therapies to maintain their independence as their bodies waste away.
ALS has touched the authors' own lives in very painful ways.
Neil was diagnosed with ALS a year ago this summer. Neil's diagnosis -- like Lou Gehrig's -- came at the prime of his life as a husband and the father of two young children. Anne's stepson, James Mathew Lewis, survived only three years after his diagnosis, finally succumbing to ALS on April 30, 2004.
Although we can both testify in vivid detail about the tragedy that is ALS -- a "bad break," in Lou Gehrig's words -- as businesspeople we're writing here to convey a more optimistic message: the economic case for ALS support in Pennsylvania. Because, while ALS can be devastating to those whose lives it touches (as we know all too well), we've also seen how even a modest government investment in specialized ALS care far outstrips its costs.
On average, 800 Pennsylvania residents suffer with ALS each year. The ALS Association provides patients and families with critical products and services: medical equipment, in-home care and certified ALS clinics that provide therapy for independent living. Because most of these recipients are unable to pay, services are provided free of charge. Limiting by budget cuts the association's ability to provide such services forces patients to turn instead to state health agencies, which are typically ill-equipped for the job. Such false "savings" cost our state more money and resources than is reasonable.
Over the past few years, Pennsylvania taxpayers have learned this lesson the hard way.
In its fiscal year 2010-2011 budget, the state Legislature allocated a modest amount to support the ALS Association. Those funds were used to provide adaptive equipment such as wheelchairs, home modifications such as wheelchair ramps, security-alert devices, in-home respite care that allows patients to stay in their homes and out of state assistance programs and support for clinic services that keep patients healthier for longer, thereby avoiding assisted-care facilities. Due to the urgent needs of patients and families, the ALS Association made use of every penny of that money, providing a net benefit of nearly $7.5 million in savings to the state!
For the current fiscal year, Pennsylvania eliminated all funding to the ALS Association. As a result, ALS patients have been forced to turn to a variety of state agencies to seek care, thereby costing the commonwealth more than $7 million because of the specialized services ALS patients require.
State Rep. Bryan Cutler, R-Lancaster County, has proposed a revenue-neutral amendment to the state budget allocating $800,000 for ALS patient care throughout Pennsylvania. We urge our legislators to vote for Mr. Cutler's amendment to the state budget as they and Gov. Tom Corbett take on the difficult task of passing the 2012-2013 budget ahead of the June 30 deadline. Restoring funding for such services can save millions at a time when tax revenues and federal funding are sharply constrained.
ALS is more than a "bad break" for patients and their families, but it doesn't have to be one for all Pennsylvanians.
First Published June 4, 2012 12:00 am