BUFFALO, N.Y. (WKBW) — Eight-year-old Jack Marchetta and his family are one of many who are advocating for increased financial support to adequately fund children's health care.
Their efforts are part of the annual Children's Hospital Association's Speak Now for Kids Family Advocacy Week.
"It's just really important to me that kids stay happy, and like they get treated well. And if they're diagnosed with something that just shouldn't get in their way like they should just like stand up strong," said Jack.
The family from Clarence is meeting virtually with members of Congress in hopes of making it happen.
Jack has a rare and incurable autoimmune disease called juvenile myositis. It causes his immune system to attack his own cells and tissue, resulting in debilitating muscle weakness and skin rashes.
"He was on chemotherapy for thee and a half years, and we needed to give him a weekly shot," said Colleen Marchetta, his mother. "At a certain point he was on eleven different medications, and now he's on a monthly IV."
Jack gets medical care at Oishei Children's Hospital, home to his angels on Earth.
"The nurses? They're like almost the best thing that could have ever happened to me. Like they're super nice," he said
The Marchettas are advocating for more federal funding because they recognize the care Jack receives from the team of pediatric specialists at Oishei.
But because of the pandemic, pediatric hospitals have been particularly hit hard. Many hospitals canceled elective procedures.
"Children's hospitals right now across the country are losing $67 million a day. Over $2 billion a month, and as the pandemic continues on these losses are just not sustainable," said Dr. Stephen Turkovich, Chief Medical Officer at Oishei.
Another problem is cuts to programs like Medicaid. Dr.Turkovich said more than 40 percent of Medicaid recipients are children. Medicaid provides health coverage to one in three children nationwide.
"Medicaid has got a lot of targets on its back because it's usually a very large program for state budgets. And so when you look at trying to cut a state budget, you look at the things that are the largest. But people don't think about children being one of the primary people on medicaid," said Dr.Turkovich.
"They're innocent. These are innocent kids who've been dealt a hand that is not fair. And I think that it's our job as a society to step in and help. So I think that's really funding that should never be questioned," said Colleen.