If the Affordable Care Act stands, it will be partly due to the efforts of the Tennessee Justice Center.

For 21 years, the Tennessee Justice Center has been working to ensure all Tennesseans’ access to health care. Now, with the ACA in peril, that work has become more urgent than ever.

The TJC is a non-profit legal organization co-founded by Michele Johnson and Gordon Bonnyman that educates, advocates and occasionally litigates on behalf of Tennesseans across the state, including people who are on or trying to get on TennCare, the state’s Medicaid health insurance program, people with serious health problems who are having issues with their insurance and people who do not qualify for TennCare and can’t afford private insurance.

Some of the patients include:

-- A Chattanooga middle school student who was pulled from a gurney on the way to surgery for a brain tumor because the hospital staff found out he’d lost his TennCare coverage

-- A man with four children and a cancerous kidney tumor who had to let his income fall before he could get insurance to pay for life-saving surgery

-- David Crockett, a descendant of Tennessee folk hero Davy Crockett, who was told by his state senator to move to Kentucky so he could get treatment for a rare neurological disease under that state’s Medicaid plan

“A state legislator is telling David Crockett there is no place for you in Tennessee. What’s wrong with this picture?” Johnson asks.

They are just a few of the more than 900 people from all walks of life and all political stripes that the Tennessee Justice Center helped last year. To Johnson and Bonnyman, health care is not a political issue. It’s a common denominator.

“What is more universal than illness, suffering and death? It’s the great leveler,” Bonnyman says.

“When you get sick and go to the hospital, you’re not a Democrat, you’re not a Republican, you’re not a Trump supporter, you’re not an Obama supporter. You’re a person who needs care.”

Republicans have long vowed to “repeal and replace” the ACA, also known as “Obamacare,” which gave insurance coverage to more than 20 million Americans, according to the U.S. Department of Health and Human Services, and added protections such as free preventive care and the end of coverage caps for more than 150 million Americans who get insurance through their employer.

But now that Republicans, who control Congress and the White House, are in a real position to do so, some Americans are starting to push back, and the Tennessee Justice Center has been a major force in mobilizing Tennesseans to pressure U.S. Sens. Lamar Alexander and Bob Corker, who both hold influential Senate positions in the health care debate.

Johnson and Bonnyman sat down with The Ledger to discuss the organization’s work and what’s at stake for Tennessee.

What kinds of people contact the Tennessee Justice Center for help?

Johnson: “The people who wash up on our shore usually are folks who have a sick child or a sick loved one, or they themselves are sick and desperately need care, whether they are covered or trying to get covered. It’s middle-class families who have children with special health care needs, even though they might have private coverage.

“Before the Affordable Care Act, they were hitting annual caps and lifetime caps so every year it was like, ‘Are we going to go bankrupt taking care of this child? The ACA really changed that.

“It also changed things for people who had a pre-existing condition like cancer. For them, insurance was just utterly unaffordable. When people talk about how much the insurance rates have gone up, the rates have always been that high or higher for people who had a pre-existing condition like cancer or even depression.

"So, when the ACA took away the ability to charge based on a pre-existing condition, it opened the door to folks who could never afford health insurance.

Bonnyman: “It’s an upper-middle class issue, too. In my career, I’ve dealt with lawyers, physicians, airline pilots, accountants – people who earned good salaries but were affected by the pre-existing condition issue or lifetime caps. If you were in the unlucky category that is subject to those sorts of things … people were just absolutely desperate because they couldn’t get coverage at any price, no matter how successful they were.

Michele Johnson, executive director and Gordon Bonnyman, staff attorney at the Tennessee Justice Center.

-- Michelle Morrow | The Ledger

“It was like drawing a card in Monopoly that basically says, ‘You’re bankrupt.’ I think a lot of the public doesn’t get that, but plenty of people do because it’s a recent enough memory.’’

Some of the potential replacement plans talk about giving states block grants for their Medicaid programs. TennCare’s $11 billion budget covers 1.5 million Tennesseans (mostly children, low-income pregnant women, and people who are elderly or have a disability). It covers half the state’s births and half the state’s children. What is different about a block grant?

Johnson: “Block grants are cuts. It means that basically the federal government is not going to be at risk for your state program anymore. They are going to give you this money, and it’s on you to figure it out how to distribute it. And that means in a state like Tennessee with no income tax, there is a shrinking pool of dollars to cover Medicaid folks.’’

Bonnyman: “If you look at where our Medicaid money is spent, particularly for children’s health, it’s not spent on prevention. It’s spent on children with really high cost, very complicated conditions.

“The perinatal network in the state is heavily dependent upon Medicaid – saving preemies. I don’t think it’s going to sell well to say we are going to cut that. But you will not meet your savings unless you go after the really sick people. You’ve got to go after the nursing homes, the preemies, because that is where we spend the most money. And if you want to save money, you go where the cost is.’’

Cutting services for the state’s most vulnerable people does not sound like a winning political position.

Bonnyman: “I think the political backlash against depriving those children of care is part of the reason why some people in Congress are pushing block grants. They want to shove that hot potato on the state and let the states be the ones to say, “OK, it’s musical chairs, who’s going to be left without a seat?

“Is it the over 50 percent of seniors in nursing homes that rely on TennCare, including a lot of parents of middle class, voting Republicans? Is it the children with special needs?”

“With block grants, there’s really no place to go that wouldn’t inflict both a lot of human misery and also political pushback.’’

Johnson: “More than half the people on TennCare are kids. If a child gets health coverage they are more likely to have higher grades, more likely to go to college, more likely to earn more as an adult and not be dependent on government assistance, and less likely to have alcohol issues or to have any interaction with juvenile court.

“So, if we take away health coverage from kids, we will be paying for that for years to come in downstream consequences that are going to harm all of us.

“Half the people in nursing homes are on TennCare, and half of all babies that are born in the state. So, most of these legislators go to church with somebody on TennCare. They talk a hard line sometimes about these folks, but if you’re going to start taking babies’ health care away, or pregnant women’s health care, or seniors in nursing homes, or women with breast cancer, it’s going to come home to roost real fast in these small towns.’’

Tennessee was an early adopter of Medicaid managed care, where the insurance companies in TennCare take on the risk for managing the cost of care. Is there any ‘low-hanging fruit’ in TennCare – easy cuts that would save money?

Bonnyman: “I don’t think there is any more low-hanging fruit. When Tenncare started in 1994, we went from having one of the highest per-capita Medicaid costs to having the lowest.

“And we went from having relatively low enrollment to relatively high enrollment. We went from paying a lot of money for not many people to paying less and covering more people under the same benefits package.

“Over 22 years, we have achieved a Medicaid program that is, I would say, unique to the extent to which it has wrung costs out of the program.

“Now the savings will be in actually managing care and keeping people healthy. About 12 years ago they went to a prescription limit of five scripts per month, only two of which could be name brand (with some exceptions).

“If I am a 75-year-old with COPD, hypertension, diabetes and half a dozen others, and I need 12 prescriptions a month, that is not managed care. I’m no apologist for Big Pharma, but medications are generally understood to be a cost-effective intervention in a great number of cases.

“So, to tell the managed care companies in the program that you’ve got to keep people healthy but you’ve only got five prescriptions to do it doesn’t make much sense. So, I think (eliminating the prescription drug limit) is one thing the state could do to save money over the long term.’’

Some of the Republican plans to replace the Affordable Care Act involve giving states more waivers and increased flexibility to use those federal dollars to run their Medicaid programs the way they want. Is that needed?

"I don’t think there is any more low-hanging fruit,” Bonnyman says. “When Tenncare started in 1994, we went from having one of the highest per-capita Medicaid costs to having the lowest.”

-- Michelle Morrow | The Ledger

Bonnyman: “Flexibility is already built into the law right now. In Tennessee, we got the original waiver, and there have been multiple amendments and revisions since. We have been on the leading edge in terms of changing the balance from paying for people to be in nursing homes to paying for home and community-based services so people can get care at home. We are doing all sorts of stuff right now with payment reform. And all of that was done through waivers.

“The bait the federal government is offering to the states is, “We are going to give you more flexibility … never mind the fact that you’ve already got that. We are going to sell you that bridge all over again.” But once you take the bait, you are stuck with making all those hot potato decisions about who is going to go without care: the perinatal network or the grandmother in the nursing home or a child with MS – pick who you want to throw out of the lifeboat.

“States are going to face those decisions every year going forward, because health care inflation has outstripped state revenues for half a century. And there’s no reason to think that is going to change.’’

The ACA also made insurance plans cover free preventive care to keep people healthy and catch disease early. That seems like a common-sense way to keep costs down over the long run.

Johnson: “An important piece of the ACA was it took all these ideas of bending the health care cost curve, giving healthcare providers the flexibility to make people healthier and cut costs. (Since the ACA) 55 million women are getting free mammograms and Pap smears.

“That is making a huge difference in their health. So, we are finally making progress on that and now we are going to pull the rug out? It makes absolutely no sense. It just seems breathtaking that we would undo that.

“The problem is that it is not a sound bite. You have all these really complex problems that require a little bit of attention span and rolling around in the difficulty of it. The ACA didn’t fix everything overnight. There is nothing in healthcare that is going to be fixed in two seconds when it’s built on this really complex system.’’

Tennessee’s hospitals have to either absorb or pass on $1.4 billion per year in health care costs for people who come in uninsured or underinsured. They’ve been strong supporters of expanding Medicaid to cover more people. What is their stand now that there is a real threat to repeal the ACA?

Bonnyman: “At the state level, the industry has really pulled back since Insure Tennessee was defeated two years ago. When and if we get the Medicaid block grants, maybe they will become more engaged with the ACA replacement. We just have not seen it that much.

“I think the energy that we see now, both at the federal level and continuing at the state legislature, is coming from the grassroots.

“As an example, I saw a letter to the editor in The Tennessean from somebody who said, “Anyone who fails to protect the pre-existing condition protection should be impeached.”

“I Googled the guy, and his last letter to the editor was about the Charleston church shootings, where he blamed it on Obama. If this is the kind of guy who is now giving the Republicans heat, it’s a new world and that’s where the energy is coming from, rather than from the industry.’’

So, the public is starting to grasp that their coverage could be impacted if the ACA goes away. Is that what you’re hearing?

Johnson: “Congress has said for six or seven years that we are going to “repeal and replace,” and all of a sudden people are starting to understand that they didn’t really mean “replace” when they said “replace.” Now we get calls from people saying, ‘Are they really going to repeal this and take away my coverage, or my kids coverage, or my spouse’s coverage? That can’t be.’ They just think it’s unbelievable that someone would do that.

“I think the vast majority of Americans believe that if you really need care, somebody will take care of you. And there are lots of very charitable doctors and hospitals, particularly in Tennessee.

“But the fact is, we talk to folks from Memphis to Knoxville all day, every day, and it doesn’t work that way. For so many people that call us, lack of health care is a barrier to their becoming full taxpaying citizens because they can’t work if they have a child that’s very sick or if they are very sick.’’

Bonnyman: “I think that most people, however they voted in the last election, never anticipated that their coverage would be at risk. I would describe our job as connecting the dots.

“When we go to a community where a hospital has closed and we say, ‘Did you know that we are passing up $1 billion a year in funding, much of which would come to hospitals, because the state legislature rejected Governor Haslam’s Insure Tennessee plan to expand Medicaid?’ And they say, ‘What’s all that about?’

“Something like 70 percent of the revenue for these hospitals is from Medicaid and Medicare, but all they know is that there is a struggle to keep their hospital open. Again, our job is to connect the dots.’’

Tennessee has a rural hospital crisis. We have the highest rate of rural hospital closures in the country, and many are in jeopardy. Rural areas tend to have fewer people with private insurance, so hospitals lose money caring for them. There’s a big impact when a community hospital closes or cuts services.

Bonnyman: “There has not been enough coverage of this story. If you close the sole hospital in a community, you shut down one of the largest – if not the largest – employers, and doctors and other health professionals move away to a place with a hospital they can admit their patients to.

“Without doctors and other health resources you can’t retain, much less grow or recruit, new industry. And without new industry, your young people move away. When you close a hospital, there is a cascade of events that really transform a region from being fairly self-sufficient and cohesive to one that is a shell of its former self.

“If this doesn’t get on people’s radars, we are going to see a hollowing-out of rural America as a consequence of careless decision-making at the federal level.’’

Johnson: “We went to McNairy County where there was a hospital closing and started talking to the nurses whose families have been there for generations. And not only are they losing their jobs, but they are going to be uninsured and their only choice to get insured in a county where there aren’t many shops is to leave.

“They will have to leave this rich history, where their great-great-grandparents had farms. That hospital has meant so much to them and their parents, their kids … one woman told us that, before she became a nurse, the hospital had saved her baby’s life, and so she has dedicated her life ever since to saving other people at McNairy County Hospital.

“The real scary part is that when you look at where the hospitals have closed in Tennessee, it’s not any sort of strategic way.

“Big parts of the state will have no access to health care, whether you live there or you are driving through and have an accident or a heart attack.’’

Gov. Haslam is a smart businessman who understands the financial consequences of having a high number of uninsured people. The state legislature shot down his Medicaid expansion plan, Insure Tennessee, and the 3-Star Healthy pilot program they have proposed only addresses veterans and behavioral health, at least initially. Is this an adequate alternative?

Bonnyman: “I would add to your description that Governor Haslam is also a compassionate man. If you watched his speech when he opened the special session to announce Insure Tennessee, he was clearly very sincerely motivated by his faith and what he thinks is required in terms of caring for our neighbor.

“I think that experience in 2015 left him with the feeling that the legislature is going to have to pick this up, that they said no to his plan and now they need to come up with their own.

“When Speaker (Beth) Harwell appointed the 3-Star Healthy task force to develop an alternative that would close the coverage gap, he said, ‘I’m not proud; I don’t care what you call it, I’m here because we need to cover these people.’

“I think there are enough people in the legislature who understand that saying no to $1 billion in federal dollars to fund rural hospitals and the health care safety net, to be a stimulus that generates jobs, was probably not the smartest position they could take, but the fact that it was going to Obama made it politically toxic.

“Now we have a new president. Now it’s going to be Trumpcare. So please can we turn to the merits of this issue and figure out what makes sense for Tennesseans?’

Johnson: “And do it fast. A lot of these people, we’ve been talking to them for two years – people with cancer, veterans – it’s just unbelievable that it has taken us this long to get to a solution and that people every day get a little bit closer to dying a premature death because politicians are playing political games as opposed to rolling up their sleeves and governing.’’

What is your strategy to pressure legislators at both the state and federal level to adopt a plan that preserves health care access and coverage for Tennesseans?

Johnson: “We are really trying to collect stories because what we’ve found over the last two decades is that people in Tennessee, no matter how they vote, if they can hear real Tennesseans telling stories that are very personal, the stories we listen to every day, it changes their hearts.

“It unlocks peoples’ compassionate sides, and energizes them to take the next step and say, “That’s not okay with me. It’s not okay because it impacts my wallet, and it’s not okay because it bothers me in terms of who I am as a person of faith, or as a person that believes that everybody should have a role in a democracy and we shouldn’t let people just die.

“So, our number one hope is in educating people by getting as many stories as possible and connecting the dots. We hope that that can change things.’’

Bonnyman: “It goes back to the notion that ‘nothing kills a theory like a fact.’ Unfortunately, we have a lot of theories driving health policy debate right now. The facts are, we all get sick, we all need health care, and it’s unaffordable to all but a handful of people.

“I think most people believe that individual families should assume responsibility for doing those things that they can do, and government should only step in when there are problems that are beyond the capacity of the family to do unaided.

“This is not a problem that families who are trying to be responsible can solve by themselves.

“Long-term care is a perfect example. We developed Medicaid to pay for that because families couldn’t sustain the cost.

“Again, it’s not a problem people can solve by themselves. We spend more per capita on government funding for healthcare through tax exemptions, through subsidies for employer health plans, through Medicare, you name it, than any other country on the planet.

“And yet we continue to have this sterile debate about whether the government should be involved. The government IS involved.’’

Senators Lamar Alexander and Bob Corker both hold influential positions in the ACA debate. You’ve mobilized your state wide network to call, email, tweet, post, and write urging them to consider the consequences of an ACA repeal. Do you think they are getting the message?

Bonnyman: “The outpouring of letters and calls and emails has really had an impact. When we first started talking to our national advocacy partners in early December, we thought there was very little hope of slowing down, much less blocking, the repeal of the ACA, but we were all going to give it our best shot.

“We have the privilege and the responsibility of living in the single state with both senators on the ‘movable’ list.

“What we’re hearing now from Alexander is directly related to the efforts of all of us. We have come so much farther than we would have thought possible, but we certainly have our work cut out for us going forward.’’

Given the sad and frustrating stories you hear week in and week out, what keeps you going?

Johnson: “The reason the Tennessee Justice Center exists is that health care is a really complex system in America. And when you are sick or your loved one is sick, you don’t want to be fighting that battle alone.

“In a perfect world, we would come up with something that is a lot simpler and reflects our values, but until we do, we are going to stay on that journey with people, and help them feel like they aren’t alone in this stressful time, that they matter and that their lives are important.

“It’s really inspiring to see the number of people from all around the state who’ve become engaged in closing the coverage gap, and we are using every tool we can to get more people engaged and give them the tools to be a voice in their own community. And they are from both political parties.’’

Bonnyman: “Absolutely we have bipartisan support. What is so exciting about this is, at a time when things seem to be so fractured, this is really about building community.

“Whether it’s about saving the rural hospital or helping a parent with cancer stay alive to raise their family … these are threats that affect us all, in terms of both financial and health care threats. So, it’s about helping people transcend their divisions to see the common purpose. And I find that extremely exciting.’’