BROOKSVILLE — Most days this spring, Liz Harmon works on renovating her lobster boat to get it ready for the fishing season, in her family’s pine tree-lined backyard in Brooksville, a town on Penobscot Bay.

Constantly at her side is her 4-year-old son, Orin, who was born with a heart defect and has severe asthma and allergies. Orin, who often plays jumping games on the lobster traps out back of the house, will need expensive medical care for the rest of his life, she said.

Harmon, 31, said if it weren’t for MaineCare, as the Medicaid program is known in Maine, covering Orin’s health care, the family would be bankrupt and might have lost their 1840 farmhouse to foreclosure.

“It’s already devastating enough to have a sick child,” Harmon said. “To have to worry about bills on top of everything else becomes overwhelming.”

But if the Republican health care bill – which was approved by the U.S. House of Representatives on May 4 and aims to replace the Affordable Care Act – were to become law, the Medicaid program would be hit with deep cuts. The bill, the American Health Care Act, is currently before the Senate, where it faces an uncertain future.

If the Medicaid cuts were to survive Senate scrutiny, at risk would be health coverage for thousands of children, adults with disabilities and low-income seniors who qualify for both MaineCare and Medicare, among other groups. About 75 percent of MaineCare recipients fall into those three categories, according to Maine Equal Justice Partners, a nonprofit advocacy group. That means states would have to figure out how to make up the funding deficits, or slash services.

Maine alone could face up to $325 million in cuts each year, according to an analysis by the Kaiser Family Foundation, a national health policy organization.

If the Harmons didn’t qualify for Medicaid, health insurance would cost them much more, with premiums in the thousands of dollars annually, because they would have to purchase individual insurance for each member of the family. The Harmons are self-employed – Britt is a plumber and Liz a lobsterwoman and hairdresser, so they don’t have access to employer-based insurance.

What buying on the individual market under the new law would mean precisely in dollars for the Harmons is not yet clear, but some provisions of the AHCA could devastate families dealing with severe illnesses, such as insurance companies being allowed to place a lifetime limit on how much money insurers will pay out for medical conditions – a provision that the ACA, commonly known as Obamacare, prohibited.

The Harmons estimate that Orin’s care has already cost more than $500,000 to date.

Britt Harmon, Orin’s dad, said medical care would ruin them financially if they didn’t have health insurance. The family sold many of their possessions, including cars and snowmobiles, to pay about $30,000 to $40,000 in medical bills while they waited for the paperwork to go through to get Orin qualified for Medicaid, a process that took more than two years. Orin was born in 2013, shortly before subsidized individual insurance was available through the Affordable Care Act. They lost their employer-based insurance a few months after Orin was born, leaving them exposed to costly medical bills.

“You can’t choose not to have these medical procedures done,” Britt Harmon said. “They have to be done to stay alive.”

Britt, 31, said Orin’s pulmonary stenosis, combined with his severe asthma, means he will likely have more surgeries and be on expensive medications for the rest of his life.

“If you think of a heart as a pump that opens and closes, Orin’s heart doesn’t close all the way,” he said.

The AHCA also weakens protections for patients like Orin with pre-existing conditions, although Maine has a law that predates the Affordable Care Act and which bans insurance companies from denying coverage to those with pre-existing conditions and from charging them more.

It’s not yet clear whether Maine would have to pass a new law to repeal its existing law, should it seek a federal waiver under the AHCA to allow insurers to charge higher premiums to people with pre-existing illnesses who have let their health insurance lapse.

DEEP CUTS TO MEDICAID

What’s not in dispute are the substantial cuts to MaineCare services that would be needed if the AHCA were to become law.

In Maine, the $2.6 billion MaineCare program, which serves about 270,000 residents, would need to be cut by $162 million to $325 million annually, if the state were unable to make up the shortfall and fill the gap with state funds, according to the Kaiser analysis.

The cuts to Medicaid nationally, projected at about $880 billion over 10 years, would be a major part of dismantling Obamacare, with those funds going to tax cuts for the wealthy planned by President Trump and congressional Republicans. The ACA imposed a greater burden on higher-income Americans than middle-class wage earners.

The cutbacks would not only affect states that expanded Medicaid but would also slash federal funding for the 18 states, including Maine, that did not. Medicaid is a blended program, funded by state and federal dollars. In Maine, the program comprises about 65 percent in federal funding and 35 percent in state dollars.

“The states would be left holding the bag,” said Robin Rudowitz, associate director for Kaiser Family Foundation’s program on Medicaid and the uninsured. “Every state would need to make decisions on what to do.” States currently have significant leeway in how they administer Medicaid, and how generous the program should be, but would have greater flexibility to make those assessments under the AHCA, Rudowitz said. She said while Republican congressional leaders have been touting the easing of Medicaid’s mandates as a benefit, the changes would require deep spending cutbacks or putting more state money into the program, she said.

“You’re not going to find this magnitude of savings by finding efficiencies in the system,” Rudowitz said.

Rudowitz said analyses have shown that Medicaid is already more cost-efficient for the health care system than private insurance.

Emily Brostek, executive director of Consumers for Affordable Health Care, an Augusta-based health advocacy group, said the Medicaid cuts in the AHCA would be devastating for many families who rely on services. The cutbacks would most likely affect society’s most vulnerable populations, she said.

“Seniors who are dual-eligible (for Medicaid and Medicare), those with disabilities, those receiving long-term care. These are the most expensive patients. These are the expensive services and where you could save the most money,” Brostek said. “You can’t cover the same number of people with less money.”

If the AHCA were to become law, Maine would have to figure out what do with a much smaller pot of money. Since 2011, Gov. Paul LePage and his administration have tightened Medicaid eligibility and kicked some groups off coverage, such as childless adults. Administration officials have said they need to prioritize scarce Medicaid resources to fund services for the most vulnerable populations, such as the disabled.

The Medicaid cutbacks wouldn’t occur until 2020, after LePage leaves office in 2019.

Maine’s congressional representatives split their votes on the AHCA, with U.S. Rep. Chellie Pingree, D-1st District, opposed, and U.S. Rep. Bruce Poliquin, R-2nd District, voting in favor of the bill.

On the Senate side, independent Sen. Angus King has already blasted the AHCA as “ill-conceived, damaging and downright cruel,” while Republican Sen. Susan Collins expressed skepticism of the bill, mirroring her previous refusal to support a similar House bill that failed to reach a vote in March.

Collins, along with fellow Republican Sen. Bill Cassidy of Louisiana, has proposed a moderate ACA replacement plan that’s pending in the Senate and would allow states to choose to maintain the Affordable Care Act as is or devise an alternate plan to provide health insurance for residents.

There’s not yet an official estimate of how many millions would be stripped of health coverage if the AHCA were to become law, but a Congressional Budget Office analysis of the March bill estimated 24 million Americans would lose insurance coverage.

Meanwhile, on the November ballot is a proposal to expand Medicaid under the Affordable Care Act. LePage has vetoed several attempts to expand Medicaid in Maine. If the ACA were dismantled but Mainers approved an expansion this fall, it’s unclear what would happen. The expansion might go into effect, but only for a year or two until provisions of the new law eliminating Medicaid expansion across the country kick in.

‘YOU COULD KISS ME GOODBYE’

Wil and Jo Tibby, siblings who share a home in Mount Vernon, say Medicaid is saving them from complete destitution.

The two receive both Medicaid and Medicare, the federal health care program for seniors. Their Medicaid coverage fills in the gaps and makes up for some health care costs that Medicare doesn’t cover.

But under the AHCA cuts, states could choose to reduce Medicaid eligibility for low-income seniors as a way to control costs.

If Maine did so, the siblings said they would be in dire financial trouble.

“That would be it for me,” said Wil Tibby, 67. “You could kiss me goodbye.”

Both are low-income seniors, with Jo’s income about $11,000 per year and Wil’s at $9,000.

Wil Tibby said his ailments include bipolar disorder, high blood pressure and spinal degeneration.

Jo Tibby, 73, has diabetes, scoliosis, depression and ADHD. She said the insulin alone for her diabetes costs hundreds per month, but she rarely has to pay anything under the current system.

“There are people who think it should be survival of the fittest, and that we should die if we can’t afford health care. I disagree with that,” she said.

The Tibbys grew up on Long Island, but Jo Tibby moved to Maine in the 1970s and built a small two-bedroom home in Mount Vernon, with a little help but mainly on her own. Wil Tibby joined his sister here more than 20 years ago, after his mental health problems caused him to lose his job as a transportation manager.

“It would be absolutely horrific” if their Medicaid coverage were cut, Wil Tibby said.

Jo Tibby, who worked as an emergency dispatcher and as a clerk in food service, said for seniors like them, Medicaid is necessary to live.

“We can’t let this happen,” Jo Tibby said.

‘YOU DON’T HAVE THIS WEIGHT ON YOU’

Liz Harmon says her son Orin’s health requires constant checking throughout the day, to make sure he’s breathing properly, among other concerns. Attending to those needs has curtailed the family’s earning potential.

Harmon said her son’s needs means she can’t just drop him off at a day care center. She and Britt are so attuned to small changes in his health that they can prevent serious infections and other problems, but others would be unable to do so.

“Caring for Orin is a full-time job and more,” she said.

The Harmons currently earn less than $20,000 per year, but are working on rebuilding their careers now that Orin’s health has improved somewhat compared to when he was a toddler.

Harmon said she takes Orin when she goes lobstering, but they can only go out on the water a few hours at a time, so she can’t make as much as lobstermen who can work 12-hour shifts during lobster season.

The stress of Orin’s health also put a strain on Britt and Liz’s marriage, she said. The two divorced in January 2016, but Liz Harmon said they have since rekindled their relationship and may one day remarry.

Now that they have MaineCare, they don’t have to worry about medical bills, which gives them more time to focus on maintaining their family and building their careers, Britt Harmon said.

“You can sleep at night. You don’t have this weight on you,” he said. “You have the mental clarity to move on with your life.”

Joe Lawlor can be contacted at 791-6376 or at:

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