Allentown resident Dina Nelson was a passionate change agent working on the front lines for health care transformation - and she possessed a wonderful sense of humor.
But when she quit her job to work as her fiance's caregiver, the new job didn't offer health insurance, and she couldn't afford it outside of work. As time passed, her medical condition required a liver transplant, but she couldn't afford one. When a hospital finally said it would treat her anyway, it was too late. Her brain swelled with fluid, and she was too unstable for the operation.
Nelson died Dec. 16 at age 41.
What would've happened had she had real access to health insurance? That was the story and the burning question her fiance of five years Scot Rosenzweig confronted Gov. Tom Corbett with Tuesday at 33 East restaurant, 33 E. Third St., outside a private $1,000-per-person roundtable discussion with Corbett sponsored by Pennsylvania Chamber of Commerce and Economic Development PACs of Lycoming County. The meeting was closed to the public and media, despite the Sun-Gazette's request for coverage.
Rosenzweig, 49, of Allentown, and five others protested outside the restaurant, asking for a seat at the table for a chance to ask Corbett for the expansion of Medicaid.
Corbett talked with Rosenzweig, who gave Corbett an enlarged photo of Nelson, with a letter urging him to act now.
"If Dina had access to good, preventative health care services when she needed it, her life would have been saved," Rosenzweig said. "Gov. Corbett needs to hear more stories like Dina's about the real impact of his decision to delay Medicaid expansion. How many lives lost are enough?"
Rosenzweig suggested Corbett pass the expansion and work out the kinks later, as the uninsured need it now, he said.
"There's no dressing it up. This is not a Thanksgiving-Day turkey - it's human lives, not politics," Rosenzweig said before meeting Corbett.
Corbett said in a later interview that he doesn't believe it will be possible to expand Medicaid as it is, with potential cuts from the federal government. Rather, he favors "people investing their own money in the private sector for health care," he said, advocating his program Healthy Pennsylvania, which still needs to be passed.
Corbett noted that about 2,500 to 3,000 people would be necessary to staff positions if the state does the expansion - staff the private sector either has or could hire, he said.
Justin Quier, 20, of Allentown, now is Rosenzweig's caretaker, and traveled with him for the demonstration. Quier also is friends with Nelson's daughters.
Emily Peters, 21, of Allentown, said Nelson was her best friend's mom.
Ivy Walker, 54, of Williamsport, worked with Nelson. "I'm here to support her," she said. Like Nelson, she said she can't afford health insurance, nor the medicine for her fractured foot.
Dennis Short, 50, of Philadelphia, said, "If the governor wanted Medicaid expansion, it could happen."
Stephen Jones, 44, of Mount Pocono, also came as part of Homecare Workers Union (which Nelson was part of) to encourage Corbett to pass Medicaid expansion.
It was clear the grief remained fresh in Rosenzweig.
"Everybody loved her," he said. "She had a very spiritual soul. She'd give the shirt off her back to help anyone. ...
"She had a wonderful sense of humor; she would laugh at all my stupid jokes.
Nelson had a free soul. "She loved to walk barefoot," Rosenzweig said.