ALS is Not an Incurable Disease. It is an Underfunded One

April 25, 2023

By Rep. Lou Schmitt (R-Altoona)
“ALS is not an incurable disease. It is an underfunded one.” You may have read those words as part of fundraising campaigns by institutions and organizations working to combat ALS, more commonly known as Lou Gehrig's disease.

But here in Pennsylvania, it could soon be the reality if the ALS funding level in Gov. Josh Shapiro’s budget doesn’t change.

As a member of the PA House Appropriations Committee, part of my job is to review the governor’s proposed budget requests and to interrogate department secretaries at budget hearings about funding requests for their respective departments.

In reviewing the Department of Health’s budget requests recently, I noticed a somewhat glaring reduction of 40% in the proposed line-item funding for ALS support. It wasn’t just such a significant reduction in funding that caught my eye. It was also the fact that all the so-called disease line items in the proposed budget (adult cystic fibrosis, lymphoma, leukemia, etc.) were proposed to have level funding, the same funding as in the last fiscal year.

Except for ALS.

When the budget secretary testified, I questioned him sharply about the ALS support funding reduction. He admitted that ALS support funding was the only disease line item cut in the governor’s budget – and that it was the governor who proposed the cut. He had no response when I asked him why the governor targeted ALS support funding, other than vaguely mentioning “other priorities.”

That isn’t good enough for me. That lost funding may mean that some families in Pennsylvania who have a loved one stricken with ALS and who can no longer walk won’t be able to afford a wheelchair. I wonder what they would think of the governor’s “other priorities.” These citizens have needs and those needs must be met. And those needs must be met, to the extent possible, through this governor’s budget.

People I care about are battling ALS right now. Many Pennsylvanians I have never met are battling it too. Those are the people I think about each time I look at that 40% funding cut. They are the faces behind a simple line item in a budget.

I asked the secretary of health and the governor’s budget secretary to both advocate for ALS support funding in this budget. I hope they do. And I’m not asking them for any increase in funding – not for a single cent more than in the previous year. All I ask is that ALS support funding be brought from $901,000 back to $1.5 million, the level where it is currently. 

I don’t know if our new governor wants to be a real leader or not. But if he does, this should be an easy call for him. And a compassionate one. And a humane one.

Editors’ Note:
Video clips of Rep. Lou Schmitt questioning the budget cuts are available for viewing and distribution. To download the clips, follow the below links, click the three dots in the lower right corner of the screen and select download.

Questions for the Governor’s Office of the Budget on April 14 here.
Questions for the Department of Health on March 28 here.

Representative Lou Schmitt
79th Legislative District
Pennsylvania House of Representatives
Media Contact: Greg Gross
717.260.6374
ggross@pahousegop.com
RepLouSchmitt.com / Facebook.com/RepSchmitt