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These Are the Faces of People With Pre-Existing Conditions. They're Terrified of the Future

Jul 26, 2017

In a two-bedroom apartment in Bethlehem, Pennsylvania, 41-year-old Jean Shenk flips through photos of her travels to Prague, Vienna, and Delhi. She shows off souvenirs she picked up in the Netherlands and the Dominican Republic, as well as places closer to home, like New Orleans.

Moments later, she brings out four keepsakes from a much different journey: three pacemakers and a piece of Dacron, a polyester fiber that her surgeon used to strengthen her aorta in multiple heart surgeries.

Shenk was diagnosed at age 8 with Marfan Syndrome, a genetic disorder that compromises the body’s connective tissue, including the eyes, blood vessels, and bones. It affects everyone differently, but in Shenk’s case, the aorta is enlarged to a life-threatening degree. As she described it, she is always at risk of her “heart exploding.”

So far, Shenk has endured two open-heart surgeries and seven other operations, ranging from aortic grafts to pacemaker insertions. Her latest complication, in October 2016, has left her unable to work or travel the world any longer. Even vacuuming her apartment is too physically demanding; the photos and statues decorating her home are bittersweet reminders of a different life.

Between the surgeries, visits to specialists, and prescriptions, Shenk estimates her health insurer has spent well over a million dollars on care related to her condition over the years. She has a six-inch stack of medical bills from the past year alone, including a $55,000 helicopter ride after she was transferred to the hospital of the University of Pennsylvania for emergency surgery. She likens managing her illness to a full-time job, from dealing with insurers and billing agencies, to scheduling appointments, to keeping up-to-date on the latest research. She currently has COBRA coverage through her old employer, but when that runs out she will have to shop on the individual market.

Over the past year, bills and doctor appointments have been far from her only worries. Like millions of people across the country who have a pre-existing medical condition, meaning a health issue that pre-dates new health insurance coverage, she is terrified of what the possible repeal of the Patient Protection and Affordable Care Act (ACA) would mean for her access to health care.

170726-pre-existing-conditions-jean-shenkJean Shenk, 41, shows the scars from two open-heart surgeries she has endured due to Marfan Syndrome. Photograph by Benedict Evans for MONEY 
170726-pre-existing-conditions-jean-shenk-4One of four pacemakers that Jean Shenk has had throughout her life. Photograph by Benedict Evans for MONEY 

The uncertainty with health care that we’re experiencing right now, I just don’t have a huge financial backlog that I can say ‘Oh, I’ll be ok.,’” she says, sifting through three years’ worth of medical bills at her kitchen table.

Stories like Shenk’s became catalysts for opposition to replacement health care bills drafted by Republicans in both the House and the Senate this year. The bills would have allowed insurers to charge people with pre-existing conditions significantly more for comprehensive coverage in the individual market than they currently pay, leading many to forego coverage or become financially destitute, said five health care experts interviewed for this story (the ACA banned charging people with pre-existing conditions more for coverage or denying them outright, and put other protections in place to defray costs).

Meanwhile, a straight repeal of the ACA with no replacement—a move endorsed by both President Donald Trump and Senate Majority Leader Mitch McConnell—could revert the individual market to the pre-ACA days, when people with serious health conditions like cancer or a genetic condition like Marfan Syndrome were uninsurable, while other issues, like high blood pressure or asthma, could cause premiums to sky-rocket to unaffordable levels.

According to the nonprofit Kaiser Family Foundation, 27% of adults under the age of 65 had medical conditions that could have led insurers to deny them coverage before the ACA. That tens of millions of people could lose insurance coverage sparked nation-wide protests over the past seven months, while thousands of other Americans have used Twitter and Facebook to share stories of their personal medical nightmares, questioning what will happen to them if the ACA's protections are rolled back. “Everybody either has a pre-existing condition or knows somebody close to them who has a pre-existing condition,” says Dania Palanker, assistant research professor at the Center on Health Insurance Reforms at Georgetown University. “It isn’t difficult to imagine what happens when pre-existing protections go away, because we were there a few years ago, and people could not buy insurance.”

Organic search interest for the term “pre-existing condition” saw a 1,050% increase from April 2017 to May 2017, when the House's bill details were released, according to social-media analytics firm ListenFirst. Video after video of constituents confronting lawmakers has gone viral in the ensuing months, including an exchange between 25-year-old Katy McFarland and Arkansas Sen. Tom Cotton back in February. “Without the coverage for pre-existing conditions, I will die,” she said at the Town Hall. “That is not hyperbole. I will die.” In late May, comedian Jimmy Kimmel started a national debate about pre-existing conditions when he talked about his newborn son’s heart condition and begged lawmakers to reconsider stripping consumer protections.

170726-pre-existing-conditions-jean-shenk-2Jean in her bathroom, testing her blood thickness. Photograph by Benedict Evans for MONEY 
170726-pre-existing-conditions-jean-shenk-3Folders of Jean Shenk’s medical expenses from the last three years. Photograph by Benedict Evans for MONEY 

The outrage over the Senate's Better Care Reconciliation Act (BCRA) and its potential consequences, which included 22 million more uninsured by 2026 and millions paying more for coverage, according to the nonpartisan Congressional Budget Office, were too politically potent for some lawmakers in the upper chamber to accept. Republican Sen. Susan Collins of Maine publicly denounced it from the get-go, saying it did not sufficiently protect people with pre-existing conditions. At the same time, President Trump, Vice President Mike Pence, and Congressional leaders vowed repeatedly that the new bill would keep the protections in place to rally support. Public opinion wasn't swayed: At the end of June, the bill had an abysmal 17% approval rating, according to NPR/PBS NewsHour/Marist poll, and it was, essentially, declared dead in mid-July.

Still, GOP efforts to replace former President Barack Obama’s crowning legislative achievement are far from over. McConnell has vowed to hold a vote—a Motion to Proceed to debate repealing the ACA with no replacement passed the Senate Tuesday, with Sens. Collins and Lisa Murkowski of Alaska the sole Republicans to vote against the measure. But that the Senate will pass something—anything—after years of promising to do so still seems likely, says Palanker. “We’ve been here before,” she says. “In March we thought there would no longer be a vote in the House and then there was a vote in May. Things are still on the table.”

As Republican lawmakers work out their next move, conversations with a dozen people with pre-existing conditions made clear that many Americans are still deeply worried about what would happen to them, their friends, and their loved ones if the ACA is repealed.

Protesters rally outside a Harden County Republican party fundraiser where Senate Majority Leader McConnell is scheduled to speak in ElizabethtownProtesters rally outside a Harden County Republican party fundraiser where Senate Majority Leader Mitch McConnell spoke in Elizabethtown, Kentucky, June 30, 2017.  Bryan Woolston—Reuters 

The ACA’s repeal is a terrifying prospect for people like 22-year-old Jessica Cunningham, who has over a dozen medical conditions that could be defined as pre-existing. The most serious of Cunningham’s conditions are migrainous vertigo and basilar migraines, which leave her dizzy and disoriented and, left untreated, could be fatal.

She’s currently on a handful of medications to manage them, totaling roughly $1,200 per month. While the ACA ensures that 10 essential benefits, including prescription drugs, mental health coverage and maternity care services, are covered in all health care plans offered on the individual market, Republican plans would allow states to redefine those benefits.

Cunningham, who is in graduate school for social work in Boston, says there’s no way she could pay for her premiums, prescriptions, and school. In her mind, the bills put forth by the House and Senate demonstrate a serious lack of empathy for people with serious medical conditions.

“I have a job, I work, I am doing everything I should be doing. And I feel like a lot of people subscribe to this belief that if bad things happen to you it’s because you’re a bad person, and that’s not the case,” says Cunningham. "I’m not this entitled millennial that thinks I deserve everything handed to me on a silver platter.”

Though the original Senate bill was thought to die last week, Cunningham's fears are not assuaged. “I'm still anxious about it,” she says. “People keep referring to it as the ‘zombie bill’ which is pretty apt. Just because [a] version is dead doesn't mean that another one won't crop up in a few months to take its place.”

She’s not wrong. Each day there’s a new development (or three): The bill is doomed, now it’s sure to pass; Texas Sen. Ted Cruz has written an amendment that will win over the GOP hold-outs; the vote will happen before July 4th, now in the first half of August, now the Senate will vote on a bill no one has read. Yet even with all of the delays, not once during the entire process has a public hearing been held for a bill that will affect tens of millions of lives and about one-sixth of the country's economy.

The opacity of the process and the near-constant tweaks and changes are taking a toll on the people who rely on individual market coverage and Medicaid.

“It’s a cloud hanging over our heads,” says Stephen Mayer, 64, of Newberg, Oregon. “My wife [who is 59] thinks the anxiety she’s feeling about it all is triggering her headaches. I’m regularly thinking about what I need to do to adjust our living budget to ensure that we won’t be too adversely impacted by the anticipated premium rate increase. But with nothing concrete coming out of D.C, it’s all still a big question mark.”

“As I have always said, let ObamaCare fail and then come together and do a great healthcare plan,” President Trump tweeted after the Senate stalled a vote on the bill last week. That type of rhetoric coming out of the White House is engendering further panic in people like 62-year-old Rhode Island resident Anne Devaney.

Devaney opened her own consulting company in 2015 after she was laid off from her corporate job. Though she’s battled breast cancer in the past and currently manages allergies, asthma, and high cholesterol, she was able to find a plan on the individual market that costs just under $700 per month. It’s more than she’d like to pay, but it’s still affordable.

Throughout the past seven months, though, she says she’s considered giving up her consulting work to find a job that offers employer-sponsored insurance. Those fears haven’t let up.

“I remain concerned about the options available to the [Trump] administration to gut the protections and requirements enacted under the Obama administration,” says Devaney. “I have to expect a significant premium increase. Insurers will hike prices since they expect only more expensive people like me to enroll.”

170726-pre-existing-conditions-aaron-guestAaron Guest, 27, at his home in Lexington, Kentucky. Photograph by Luke Sharrett for MONEY 
170726-pre-existing-conditions-aaron-guest-2Guest takes medicine for OCD and migraines. Photograph by Luke Sharrett for MONEY 

Aaron Guest, too, is apprehensive about what the Trump administration could do to rollback certain protections, such as prescription drug coverage. Guest, a 27-year-old Ph.D. student in Lexington, Kentucky, has been diagnosed with obsessive-compulsive disorder and migraines, and currently takes prescriptions that cost him between $40 and $50 per month with his insurance. If insurers are able to cherry-pick which benefits they cover, Guest worries he will no longer be able to afford his medications.

“There still is very much the opportunity for repeal with delayed replace, and that would be traumatic,” he says. “I don’t even know how to describe how that makes me feel.”

The past few months have been a “wake up call” for him and others on how easily health care coverage can be gained and lost in one of the richest countries in the world. “It won’t work if you try to destroy it, so I think the fears are still there,” he says. “I could wake up tomorrow and there could be a new bill. You never know right now.”

170726-pre-existing-conditions-thelma-greenThelma Green relies on Medicaid to help her day-to-day life. Photograph by Benedict Evans for MONEY 
170726-pre-existing-conditions-thelma-green-2Thelma Green’s crutches. Photograph by Benedict Evans for MONEY 

It's not just people in the individual market who are worrying about what's going on in Washington. One of the primary cost-saving measures in the original Senate bill comes from capping spending on the Medicaid program, resulting in an estimated $772 billion in cuts over the next decade.

According to Marty Ford, senior executive officer of public policy for The Arc, the nation’s largest disability rights organization, capping Medicaid, which currently provides health coverage for some 74.5 million children and low income and disabled adults, to such a degree would result in states cutting programs and redefining eligibility requirements. All told, the CBO estimated 15 million fewer people would be covered by the program in 2026 relative to the ACA.

That includes people like 57-year-old Thelma Green. Green has cerebral palsy, and depends on Medicaid to pay for care ranging from doctor’s visits to an in-home nursing aide who assists her for eight hours each day. She also needs special shoes to help her walk, and uses crutches and a wheelchair, all of which Medicaid covers. “It’s so many people who need that in order to get around, to live a normal life,” she says about the program.

For Green, restructuring Medicaid means more than a premium increase or higher out-of-pocket costs— it means her ability to live an independent and fulfilling life is undermined. Because benefits like personal assistants and other types of in-home care are classified as optional under Medicaid, they would be among the first things cut if state funds are squeezed. “No matter what they cut, we’re going to get hurt. Not just me but a lot of other people will get hurt,” she says.

U.S. Capitol Police remove Laura Halvorson, a protester, from in front of the office of Senate Majority Leader Mitch McConnell (R-KY) inside the Russell Senate Office Building on Capitol Hill, on June 22, 2017 in Washington, DC.U.S. Capitol Police remove Laura Halvorson, a protester, from in front of the office of Senate Majority Leader Mitch McConnell (R-KY) inside the Russell Senate Office Building on Capitol Hill, on June 22, 2017 in Washington, DC.  Mark Wilson—Getty Images 

That’s why dozens of disabled activists took over McConnell’s office in late June after the Senate bill text was released, including 33-year-old Laura Halvorson. Photos and videos from the June 23 “die in,” depicting Capitol police arresting some protesters and forcibly removing others, including Halvorson, went viral on social media. Halvorson, who has muscular dystrophy and is confined to a wheelchair, lost her employer-sponsored health care in 2016, and relies on ACA coverage for her breathing machine and motorized wheelchair, as well as long term services and supports, which are covered by Medicaid.

“I was willing to put my body on the line,” Halvorson said a few days after the protest. “Health care is a life or death matter, so I wanted to make sure our voices were heard.”

Halvorson and other activists are hoping to influence lawmakers like Sen. Shelley Moore Capito of West Virginia, where one out of four residents relies on Medicaid. “As I have said before, I did not come to Washington to hurt people,” Capito said in a statement last week. “I have serious concerns about how we continue to provide affordable care to those who have benefited from West Virginia’s decision to expand Medicaid.” Capito voted "yes" on the Motion to Proceed to debate on the Senate's bill.

Indeed, Georgetown’s Palanker says there's little reason to celebrate even if the Senate doesn't repeal and replace the ACA this year. “The reality is we probably will see legislation again that will attempt to cap Medicaid, attempt to roll back protections in the individual market,” she says.

170726-pre-existing-conditions-thelma-green-3Thelma Green at her home in Washington, D.C. Photograph by Benedict Evans for MONEY 

Back in Bethlehem, Shenk says that lawmakers like Collins and Murkowski are standing up for people with pre-existing conditions is allowing her a bit of breathing room after months of constant anxiety. “I’m still very much looking at everything cautiously because they could turn around and do something else to blow it up,” she says. “I can’t stop worrying because we don’t have a complete solution yet, for anything. But I can at least take some solace in the fact that some politicians are looking out for their constituents. That helps.”

Still, she hopes Republicans will refocus their efforts and work with their Democratic colleagues for some true fixes to the U.S.’s health care system, including further expanding Medicaid and lowering premiums for people in the individual market who don’t currently receive federal subsidies.

“I don’t want to see the Dems gloating either, I want to see everybody come together,” says Shenk. “If they start talking to each other, something good could come out of all of this.”

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