(The Center Square) – Proposed cuts to Pennsylvania’s support for several chronic diseases may not be all that they seem, budget records show.
The Department of Health faced criticism Tuesday during a hearing with the House Appropriations Committee over a proposed 40% funding reduction for programs that serve ALS patients and their families.
The department historically earmarks millions in support of diseases that include AIDS, ALS, sickle cell anemia, hemophilia, Lyme disease, cystic fibrosis and leukemia, among others. Last year, the state spent more than $16 million supporting programs for these conditions.
Programs for ALS, or amyotrophic lateral sclerosis, received $1.5 million alone from the department in 2022 – a 76% year-over-year increase. Other conditions saw 6% boosts to state support, as well.
Merritt Spier, territory executive for the western Pennsylvania Chapter of the ALS Association, told The Center Square the state’s funding goes directly to families to cover the cost of equipment and home upgrades that help patients live more comfortably and independently.
“Every single dime we get goes directly to support patient care and the unique care services they need,” she said. “It really is life changing.”
This year, however, Gov. Josh Shapiro’s $44.3 billion spending plan proposes cutting ALS funding by $600,000 – or roughly 40%.
“They are all terrible diseases, but they are all level-funded and I can’t understand what possible reason there could be for cutting support for families and the victims of what might be the most horrible disease on this list,” said Rep. Lou Schmitt, R-Altoona, during the committee hearing Tuesday. “This is the first budget I’ve ever seen ALS funding cut.”
Acting Health Secretary Debra Bogen said the administration’s proposal is just a “starting point” for negotiations, and that its ultimately up to the General Assembly to appropriate funding.
“I can say that, as you said, there are many serious diseases listed on the budget,” she said. “We will do our best across all of those that we get the maximum amount of funding to support all of the diseases that afflict our human race.”
The governor’s office did not respond Wednesday to The Center Square’s questions about why the ALS line item, in particular, was reduced.
Although the proposed cut exists in the administration’s plan, a review of prior budgets – both proposed and enacted – dating back to 2018 shows the state’s monetary support for chronic conditions is often cut by the administration to balance its spending, the total of which is often scrutinized by lawmakers worried about growing the deficit.
In the end, support is often completely restored – and sometimes boosted – by the time lawmakers and the governor reach a final deal.
A legislative source told The Center Square that Shapiro’s proposal uses this accounting trick more sparingly than previous administrations. This year’s plan includes 50 zeroed-out line items, many of which come as a result of moving state police spending out of the general fund.
Former Gov. Tom Wolf, for example, suggested cutting all funding for veterans’ behavioral support services, the Red Cross’s Extended Care program, disaster relief, search and rescue and hazard mitigation in his 2019-20 proposal. Of the 55 line items he drained, only 21 made it into the enacted budget – none of which included support for chronic disease services.
In 2018, the Wolf administration’s proposal zeroed out 36 line items across the Department of Agriculture, the Pennsylvania Emergency Management Agency, and the Department of Community and Economic Development, among others. The finalized budget included six cuts, in total, but just two matched Wolf’s initial plan.
Marie Folino, the ALS association’s patient services director, said the money the state provides is awarded as a grant to roughly 400 patients each year who need help that insurance can’t provide.
For example, she said, ALS patients dependent upon wheelchairs need to install ramps that make their homes accessible. The association supplies and installs these ramps free of charge, and refurbishes them for the next patient when necessary.
It’s just one way, she said, the grants support residents. But she is mindful that the funding isn’t always guaranteed.
“I feel like every year we do have to explain and demonstrate the need of why this is so critical for ALS patients and their families,” she said.
