Maddie Nelson is a budding gymnast, wears purple sneakers and is contemplating a career as a scientist, or possibly a teacher. In other words, she’s a typical 6 year-old, except for one thing: she has an incurable disease.
“She was, I think, as close to dying as a baby can be and come back,” her mother, Erin Nobles, said.
Maddie has pulmonary hypertension, a narrowing of the blood vessels that connect the lungs and heart. A complex daily medical regimen allows her to keep up with her first grade peers. It’s also expensive. The annual cost of one drug she takes four times a day is more than $100,000.
“It’s a rare condition, so the medication is extremely expensive,” explained Nobles. “Without it, the life expectancy for a person with pulmonary hypertension is just a couple of years.”
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Access to medical treatment is so vital, and with the debate around healthcare so uncertain, Maddie’s parents made a difficult decision to leave their home in St. Petersburg, Florida. A year and a half ago they moved to Melrose, Massachusetts.
“Florida is my home and I thought it was where I was going to raise my kids,” Nobles said. “But with the drum beat to repeal the affordable care act, my husband and I realized we couldn’t stay in Florida.”
Their biggest concern was that a change in healthcare could result in insurance companies no longer being required to provide coverage for people, like their daughter, with a pre-existing condition. In Massachusetts there’s been a law requiring coverage for pre-existing conditions since 2006, when Governor Mitt Romney led the effort to create statewide universal healthcare.
“Massachusetts has a sort of stop gap for us,” explained Nobles. “Even if the Affordable Care Act is repealed, we’ve got state coverage.”
But the unraveling of federal law could impact state law.
“The problem is they’re talking pretty universally on the Republican side about getting rid of the individual mandate,” said Lora Pellegrini, president and CEO of the Massachusetts Association of Health Plans.
She says insurance companies that provide coverage for people with complicated and expensive medical conditions also need healthy customers. Under the Affordable Care Act, the individual mandate requires everyone to get health insurance. She says if it’s repealed, as is being proposed in Congress, the math no longer works.
“You’re going to get a lot of sick people who buy insurance, but the healthy people are going to wing it and not purchase insurance until they need to,” Pellegrini said. “To make this all work we need healthy people and sick people together in an insurance pool.”
An even bigger concern is the fate of publicly funded insurance. Medicaid, known locally as Mass Health, provides coverage for nearly two million Massachusetts residents. The program costs $15 billion and more than half the money, $9 billion, comes from the federal government.
“They talk about block grants or per capita spending,” Pellegrini said. “I think that’s a buzz word for states like Massachusetts that we would probably lose federal funding.”
The Baker administration estimates Mass Health could lose up to $2 billion under the House Republican plan.
The Nobles have private insurance that covers the cost of Maddie’s treatment. Pulmonary hypertension is a progressive disease and she’ll likely require a lifetime of medical interventions. Her parents have done their best to position Maddie so she’ll get the care she needs.
“We’re here in Massachusetts," said Nobles. "I don’t know where else we could go."
