Pa. mothers whose children rely on Medicaid keep up the pressure

Congressional Republicans' plans to repeal and replace — or even just repeal — Obamacare may be on hold for now, but four Pennsylvania mothers of chronically ill and seriously disabled children said Tuesday they can't afford to let up on their efforts to preserve the public program that pays for their children's care.

As guests of the Pennsylvania Health Access Network (PHAN), a statewide health consumer advocacy group, the women spoke out about what cuts to Medicaid – a part of virtually all the GOP's proposals – would do to working families like theirs. Although Medicaid is most often thought of as a health-care provider for the poor, it also funds care for people with severe conditions that would not be fully covered by private insurance.

For Marlee Stefanelli, 39, of South Abington, Medicaid helps pay for 5-year-old son Matthew's 24-hour blood-sugar monitoring device, which makes it possible for the boy to go to school. The special device monitors Matthew, who has Type 1 diabetes, and sets off an alarm that lets teachers know if his blood sugar levels become unstable.

Stefanelli, who has a mental health therapy practice with her husband, said private insurance would not cover the cost of the device.

"This device is vital," Stefanelli said. "It's life-changing for us."

Anna Corbin, 38, of Hanover, said sons Jackson, 11, and Henry, 9, both have Noonan syndrome. The genetic disorder prevents normal development in various parts of the body.

Earlier in her sons' lives, Corbin said, the family did not know they could get help from Medicaid. Despite private insurance, they could not afford all the care their boys needed. They ran up $42,000 in credit card debt.

"We were ready to lose our home," said Corbin, who cares for her sons full time. Her husband works in insurance.

Janeen Moser, 36, of Norriton said her daughter Midhuri was born with trisomy 18, a rare developmental disability that requires the child to use a feeding tube and heart monitor and to receive oxygen. Moser said her daughter's care includes 12 specialists, five therapists, and several nurses.

Moser is a teacher and works in human resources. She and her husband also operate a landscaping business. Without Medicaid, Moser said, they would not be able to pay for all of Midhuri's care.

"Medicaid is for people like us, and I never would have thought that," Moser said.

Today, Midhuri is a happy child who enjoys school.

For Casey Dye, 41, of Monroeville, Medicaid helped pay for her daughter's therapy for severe speech and hearing delays. Chessie, 8, likely would be unable to communicate and might not have been able to go to school without the therapy.

Dye works full time as a nurse, but the family's private insurance did not cover the full bill.

The mothers have tried to reach out to Sen. Pat Toomey (R., Pa.) to get him to back continued Medicaid support without success.

Stefanelli said that she was one of several women who received an audience with the senator but that they could not change his mind about replacing the Obama-era Affordable Care Act.

Toomey said he opposed abortion, she said. "If he was really pro-life, he would be fighting for everyone to have health care," Stefanelli said.

Medicaid has been a consistent target in all Republican proposals on health care, said PHAN's director, Antoinette Kraus. Those proposed cuts prompted the four women to speak up.

"There's just a lot of uncertainty," Kraus said. "We have to be vigilant."