Cutler Says House Committee Hears ALS Testimony
4/23/2009
The House Health and Human Services Committee held a public hearing today, chaired by Rep. Bryan Cutler (R-Peach Bottom), to learn about the services available in Pennsylvania for individuals and families coping with Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease.
 
“This is a devastating disease, one that I have been personally impacted by, and the Commonwealth must consider what we can do to help Pennsylvania residents living with this illness,” said Cutler. “This is not something an individual or a family can fight alone – it truly needs a community to take on ALS, and that community must involve state government.”
 
The committee received testimony from: 
  • James Pinciotti, executive director of the ALS Association, Greater Philadelphia Chapter.
  • Ellyn Phillips, president of the ALS Association, Greater Philadelphia Chapter.
  • Pauline Chiang, a Lancaster County resident living with ALS.
  • Courtney Zydel, an ALS youth advocate from Pittsburgh.
  • Michael Bernarding, executive director of the ALS Association, Western Pennsylvania Chapter.
  • Zachary Simmons, M.D., professor of neurology and medical director of the ALS Center. 
ALS is a fatal progressive disease, affecting more than 800 Pennsylvania residents.  The disease robs those impacted of the ability to perform self care, such as dressing, eating and bathing, and many of those diagnosed lose their ability to walk, speak, gesture and even breathe, but their minds and memories remain intact. Most people who are diagnosed have a life expectancy of two to five years.  

Those who testified told the committee it is an expensive disease to treat, and as a result, many sufferers try to work as long as they can. Many times, they do not qualify for a number of government programs and services or the waiting list is too long to receive any assistance. That is where ALS Association comes into play by working with health care facilities across the state and addressing the disease through a multi-disciplinary approach which has proven beneficial to patients.

Three recent studies presented during the hearing found that military veterans are at an increased risk of dying from ALS than those with no history of military service, especially those who fought in the Gulf War in the early 1990s.
 
“If we are putting our servicemen and servicewomen into greater risk to contract ALS, then I believe it is incumbent upon our government to see that treatment services are available and accessible to them,” Cutler said, pointing out that Gulf War veterans are approximately twice as likely to develop ALS as those not deployed to the Gulf.
 
The hearing also focused on obtaining a line item for $800,000 in funding in the state budget to support ALS services and programs. Greater funding would allow sufferers to obtain assistive devices, transportation to medical appointments, respite and in-home care, multi-disciplinary clinics and nutritional supplements.
“This year’s budget is very tight, but I believe that this relatively small investment in the state budget can greatly serve the thousands of people suffering from ALS and their loved ones, and would be money well spent,” Cutler said. “As the son of two parents who were stricken from and died from ALS, I feel a personal responsibility to raise awareness of this devastating disease and try to do what I can to help the suffering for those afflicted with it.”
 
Rep. Bryan Cutler
100th District
Pennsylvania House of Representatives
 (717) 786-4551
(717) 783-6424
Contact: Nicole Wamsley
nwamsley@pahousegop.com
(717) 783-8063
Member Site: RepCutler.com
Caucus Site: PAHouseGOP.com