Tales from patients that stand to lose a lot from GOP health bill

Senate Majority Leader Mitch McConnell, R-Kentucky, has decided to postpone a vote on Republicans' legislation to repeal and replace the Affordable Care Act, also known as Obamacare, after concluding he does not have the votes to pass the bill this week before the chamber goes on recess for the 4th of July holiday.

Several large patient and hospital groups, including the AARP and American Medical Association, have expressed skepticism about the draft legislation when it was first released last week in the Senate, but ramped up their opposition to the bill after the Congressional Budget Office (CBO) presented its formal analysis on Monday. The CBO report estimates that over the next 10 years, 22 million Americans would end up uninsured under the Senate plan as compared to trajectories under current law. The difference was largely a result of deep cuts to Medicaid within the proposal, as well as smaller subsidies in the form of tax credits to help people purchase insurance on the individual market.

In addition, the CBO outlined ways in which some of the sickest and most vulnerable Americans could be subject to changes in regulations that could dramatically increase out of pocket costs.

Many groups seemed to breathe a momentary sigh of relief when leadership announced any vote would be delayed. Samantha McGovern works closely with March of Dimes, one of the many health care groups that came out against the bill. March of Dimes works specifically on prenatal health, infant mortality, and care for premature babies.

McGovern’s daughter Josephine was born premature at 24 weeks in 2016 in northern Virginia. As a result of all of the complications with the development of her lungs, Josephine had to be hospitalized for over a year -- 407 days, to be exact.

McGovern and her husband both have steady incomes and robust health insurance, which he receives for their family through his job with the federal government. Still, McGovern worries about the possibility of states receiving waivers that would allow them the ability to overturn bans on lifetime and annual limits under the GOP plan.

“We are still very much in the thick of this,” she told ABC News. Josephine still relies on a feeding tube to eat and tracheotomy to breathe. She will likely need round-the-clock care, even at home, for the next few years.

“When people talk about the life time maximums and annual caps, that absolutely terrifies me,” McGovern said. One of Josephine’s medicines costs $7,000 per month before insurance, according to her mother. “When would that go into effect? What about the millions of dollars we have already made our insurance company pay out? If this passes, is she suddenly not insured?”

The McGoverns benefitted immensely from Medicaid during the first year of Josephine’s life, and still do now. The state of Virginia offered them so-called “institutional Medicaid,” a program that helps patients and families cover especially long hospital stays for sick children, even if they earn more income than traditional Medicaid enrollees. Their private insurance did not cover home care either, and they were able to apply for Medicaid help from the state for that as well.

“I never thought in a million years I would be someone who needs Medicaid,” said McGovern, who works in communications for a university in Washington, D.C. “I think what people don’t realize is what the actual cost of health care is… If our family was just a healthy family and were talking about an occasional cold, our insurance would be fine. But when you start talking about $26,000 a month, unless you are wealthy, you don’t have that money.” She estimates that figure as the total cost of caring for her daughter these days, which includes a home ventilator and in-home nursing.

The CBO report indicates the Republican bill will shrink Medicaid funding by nearly $800 billion over the next 10 years. While there is some specific language in the bill to make sure disabled children are not included in newly established monetary caps per enrollee, it’s unclear to many families how the details would shake out. Would the state of Virginia, for instance, still be able to offer that long-term hospitalization assistance to a family like the McGoverns, who have two steady paychecks, if its overall budget for Medicaid was cut so dramatically?

“They are going to have to make hard decisions,” McGovern said. “How do you choose between someone’s grandmother and someone’s baby?”

Joe Merlino, 51, lives in Nevada and petitioned his Republican senator to vote against the bill. Merlino was diagnosed with a rare form of larynx cancer six years ago and relied on individual, non-group insurance he was able to purchases on the state’s exchange.

Merlino was misdiagnosed in 2009 and lost his job a year later. When he found a new customer service job in 2011 with Southwest Airlines, he immediately made an appointment. That doctor found a two-centimeter mass.

His surgery and recovery took him away from work for a few years, and he eventually lost his employer-based insurance again. He was living off of disability insurance payments, which was when he was pleased to learn that -- just by a matter of months -- that he qualified for government assistance through Medicaid.

Beginning in 2014, under Obamacare, states like Nevada, which opted for matching federal funds, could extend their Medicaid coverage to Americans earning less than 133 percent of national poverty line, whether or not they had children or were disabled. This is equivalent to an individual earning about $15,600 per year.

“Thank goodness for that Medicaid expansion, because without that, I would have never been able to get the procedures I needed,” he told ABC News. “I probably would have died.”

The federal dollars for those Medicaid expansion programs would dry up within the next 4-6 years under the Republican House and Senate plans. Merlino is currently covered through private, individual insurance he purchases every month, which he prefers to Medicaid.

“It was just amazing, and allowed me the freedom to see my doctor without having to jump through all the hoops,” he said, adding that he pays $160 per month with $500 out -of-pocket total for his plan. ABC News was not able to verify those numbers.

“There is a stereotype about ‘welfare queens,’ which I think is so horrible,” he said during his interview. “There are many different types of people on Medicaid, and you never know when you are going to be one of them, and that what’s I found out…. the hard way.

“You can go from way up high to way down low as fast as a doctor’s phone call,” he adds.

Marcy Shelton is relatively healthy for her age. At 62, she worries about that doctor’s phone call and whether her premiums might go up as well.

“It’s all a little bit scary,” she told ABC News.

Shelton used to be a clerk taking gambler’s bets at some of the nation’s fanciest horse racetracks in California, but over time her hours shifted and were cut back. Her union offered her early retirement but no insurance, so she bought individual coverage on the state exchange.

She went with one of the cheapest options, she says. The plan has a high deductible, over $6500. She called it a “catastrophic policy,” but she’s happy with it.

Because of her age and income, Shelton could receive a much smaller subsidy to purchase her own insurance under the Senate plan. Between her retirement and Social Security payments, she says she brings in about $44,400 per year before taxes. According to the latest CBO report, a 64-year-old making $25,600 a year could see their annual individual insurance premium rise by $2,000. Someone the same age, making $56,800 could see a jump over $10,000 a year because of smaller tax credits, the organization estimates. Shelton’s income puts her somewhere in between.

“They should be going after the big insurance and prescription drug companies about how much they charge, instead of having to fight for supplements,” she said. She’s an active Democrat and has been volunteering with the Center for American Progress to lobby against the bill.

“If they get those guys normal, they wouldn’t need all this,” she says.

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