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Advocate staff photo by TRAVIS SPRADLING – Gov. John Bel Edwards signs the first executive order of his new administration at the State Capitol, No. JBE 16-01, which provides for Medicaid expansion in the state of Louisiana.

Travis Spradling

In the month that Flora Guillory has been on Medicaid, she's been to the doctor four times.

Before she qualified for Medicaid, she couldn't imagine having the ability to go to a doctor four times a year, despite suffering from severe health ailments including sarcoidosis of the lungs and lymph nodes, deep vein thrombosis, high blood pressure, high cholesterol, diabetes and hypothyroidism, among others.

"Those are just the major things," she said.

About a month ago, she learned she would qualify for Medicaid since the state expanded the health care program for the poor in July.

A full-time daycare worker, Guillory couldn't afford health insurance on her own.

"The expansion allowed me to get it when I couldn't get it before," she said.

Guillory's husband died in December after about a year-long battle with liver cancer. They had tried to get onto Medicaid when he was alive but couldn't. Instead, Flora decided to forego insurance and they pooled their double-income resources to pay for insurance to cover his cancer treatments.

Shortly after he died, she received notice that he could enroll in Medicaid, she said.

"He did well with his treatments, but the damage was extensive, so it finally took him down," Guillory said.

Louisiana is taking a unique role in the fight over President Donald Trump's efforts to repeal and replace the federal Affordable Care Act, with stories like Guillory's being used as examples of the benefits and downfalls.

Gov. John Bel Edwards' office and Together Baton Rouge, a coalition of religious and community leaders, are collecting stories of how people have benefited from the state's expansion of Medicaid through the ACA.

Edwards, a Democrat, signed an executive order expanding Medicaid through the Obama-backed Affordable Care Act shortly after taking office in January 2016. The expansion took effect July 1. In the months since, enrollment has continued to climb past 408,000, with thousands of patients reportedly seeking care for chronic conditions and severe illnesses.

Under the expansion, which is an opt-in provision for states, adults who make less than 138 percent of federal poverty level — about $33,500 a year for a family of four or $16,200 for a single adult — can qualify for free health care coverage.

The federal government paid 100 percent of the costs for the state's newly-enrolled through the end of 2016, and the state gradually will take on up to 10 percent of the costs by 2020, if the existing law stands. State leaders have said that the infusion of additional federal dollars linked to the Affordable Care Act has saved the state nearly $200 million.

U.S. House Majority Whip Steve Scalise, a Jefferson Republican who has emerged as a key ally of President Donald Trump in the health care debate, solicited stories of his own from those who had bad experiences with the health care law.

During a recent highly-publicized hearing on a new health care law backed by the House GOP leadership, Scalise waved a binder full of stories from his Louisiana constituents and read several of their specific accounts.

Richard from Abita Springs, a veteran whose wife's health insurance premiums doubled in the first year of the ACA. Christy from Slidell, who "for the first time in (her) life" doesn't have health insurance because her family of four couldn't keep up with the rising costs. Pamela from Mandeville, who at 57 years old had to get a plan that covers maternity and pediatric care.

Each one, Scalise said, had faced higher costs of health insurance or other negative impacts after the ACA took effect.

"These are real people," he said. "They are fed up with this law."

Scalise is one of the most visible surrogates for the alternative health care proposal, which in its current form would freeze Medicaid expansion enrollment in 2020 and convert the health care program for the poor to a per capita federal funding model.

"Some people have forgotten the reality of what's happened in the last seven years," Scalise said.

Currently, the federal government picks up a share of each state's costs, depending on health and income disparities, no matter how much is spent. Edwards and other proponents of the current Medicaid system say that could lead to states shouldering more of the burden or cutting their rolls.

Louisiana health leaders have made a big push to enroll more people on the expanded Medicaid program since it went into effect. People who were already on some smaller programs that had the same eligibility parameters were automatically shifted to Medicaid, and those who receive food stamps received notices that they may also be eligible for Medicaid under the expansion.

Guillory isn't sure why she received a letter in the mail informing her that she would qualify for Medicaid, but she views it as a godsend.

"I was very surprised when I received the letter in the mail," she said. "All I knew was I was grateful."

She said the ability to see doctors as she needs to has had a dramatic impact on her life, particularly since her husband passed away.

"It's made such a big difference in my quality of life," she said. "I can go and have these things taken care of."

When she heard that changes could be coming to the program, Guillory said she was "heartbroken."

"I felt finally when I'm at a point where I can deal with my health issues and get to a point where I'm more healthy now, this can be taken away, and especially not that I'm by myself ..." she said.

Guillory's daycare job pays enough for the basics – food, her monthly necessities – and her work doesn't provide health care benefits.

"I can only pay for my bills," she said. "I can't afford anything over that. I just don't have the funds available."

"If they do away with it, they are going to have more people suffering, dying because they can't get the health care that would have been available to them," she said. "With my illnesses, I could be one of them."

Margie Vicknair-Pray, of St. Tammany Parish, is in a different position. She has Medicaid but mostly can't use it. She's still a huge advocate of the expansion.

"It really hasn't helped me at all because I haven't been able to use it. If it had been working I would have used it," she said.

Vicknair-Pray, 64, said she has an optional insurance through her part-time job. But she was hopeful that enrolling on Medicaid would provide full coverage. Because Louisiana goes through a managed care system to deliver most of its Medicaid benefits, many patients are left to choose between the companies. Vicknair-Pray says she accidentally picked the wrong one. She can't go to any of her local doctors and would have to wait a year to change providers, but she's in the process of challenging that.

She said she worries for people who, unlike herself, have no other health insurance options.

"Having Medicaid gives a lifeline to help keep people going," Vicknair-Pray said. "I don't think anybody in their right mind can stand there and say that you shouldn't provide Medicaid. It's insanity."

Follow Elizabeth Crisp on Twitter, @elizabethcrisp.