The United Patients of America

18 minute read

Angéla Lorio never thought she would have a friend like Jessica Michot. Lorio is a Republican who once trained to be a nun. Michot is a Democrat who went to school to be a social worker. Lorio watches Fox News; Michot watches MSNBC. Lorio voted for Donald Trump. Michot was for Hillary Clinton all the way.

But the two Louisiana moms, who live just a dozen miles apart, were drawn to each other by a force stronger than politics. They met in 2013, after discovering on Facebook that they had overlapped for months in a Baton Rouge neonatal intensive care unit, praying over tiny beds. Lorio’s son John Paul and Michot’s son Gabriel were born at 27 weeks, which led to severe problems that require them to eat through feeding tubes and breathe through “trachs.” Both boys, now 4, also have developmental delays, and their mothers rely on Medicaid to defray the costs of caring for their sons at home.

Angéla Lorio with her son John Paul appear at their home in Baton Rouge, LA on July 8, 2017.Daymon Gardner for TIME

Lorio and Michot connected immediately over shared experiences–cleaning trachs, mixing formula, inserting feeding tubes–and they soon launched a group for parents like them. They called it Trach Mommas of Louisiana. “This is the first time I’ve had a very close friend that was on the other end of the [political] spectrum,” says Lorio, 43, who cares for John Paul full-time. “We can look in another mom’s eyes and say, ‘I’ve been there.’ That’s what unites us.”

Now, as Trump and the Republican-controlled Congress work to overhaul America’s health care policy, Lorio and Michot find themselves united for another reason: both moms are committed to stopping the Senate Republicans’ health care plan, which they see as a direct threat to their children’s welfare. Of particular concern is a provision in a Senate draft proposal that would allow insurance companies to impose lifetime caps on benefits, which could make seriously ill patients essentially uninsurable in the private market. Lorio and Michot also oppose a projected 35% reduction over two decades in federal funding for Medicaid, which they fear would force states to eliminate the programs that help parents of disabled children care for their kids at home. “They will be cutting off his life support,” Michot, 33, says of Gabriel. “Without Medicaid, he would either be dead or institutionalized.”

So on July 8, Lorio and Michot set off in a bus full of wheelchairs and ventilators to Washington, where they joined more than 100 other parents, patients and advocates for the chronically ill and disabled to protest the health care proposal. They were a motley tribe: Trump voters and Clinton backers, children with oxygen tanks and adults with autism, experienced rabble-rousers and political neophytes. Some had never called their Senators’ offices, much less showed up on their doorsteps. But together, these dedicated activists amount to a powerful new constituency, one that is homegrown, bipartisan and mobilized behind a single issue: to protect access to federal health care benefits.

This unlikely grassroots army is a key reason the Republican Party finds itself with few good options on health care, despite controlling both houses of Congress and the White House. As GOP lawmakers attempt to deliver on promises to repeal Obamacare and reduce federal entitlements, while simultaneously serving constituents who rely on those very programs, the result has been a series of health care bills, first out of the House and now the Senate, that appear to satisfy no one. The House bill, which passed in May, is the most unpopular legislation in three decades, according to an MIT analysis of public-opinion polls, receiving support from just 28% of voters.

The backlash led Senate majority leader Mitch McConnell to postpone a vote on the Senate’s version at the end of June. On July 11 he announced that the Senate would stay in session an extra two weeks into August to get the job done. The proposed revisions McConnell is considering allowing more federal Medicaid spending for particular issues like the opioid epidemic–an attempt to draw reluctant Senators’ votes.

As the veteran Republican leader works to persuade enough of his colleagues to get the hobbled bill over the line, advocates like the Trach Mommas and other patients and parents across the country will be rallying the opposition behind a deeply personal cause. “This isn’t about parties and how you voted,” Lorio says. “This is about saving lives.”

Jessica Michot appears with her son Gabe at their home in Denham Springs, LA on July 8, 2017.Daymon Gardner for TIME

People like Lorio and Michot don’t really have time to be activists. For parents of kids with complex medical needs or chronically ill adults, even going to the grocery store can be a heavy lift. Who has the extra hours it takes to organize a rally when there’s a child at home who needs round-the-clock care?

A threat to that care has a way of changing things. Maggie Chism says she didn’t get involved in politics until her daughter Evelyn was born with a congenital heart defect 10 months ago. Now she’s calling and writing letters to McConnell, who represents her in Kentucky. Rocky Fuselier, a 54-year-old Trump voter from Louisiana who was paralyzed in a diving accident when he was 19, traveled to Washington to advocate for continued funding of programs that help disabled adults live independent lives. Laurie Merges, a 47-year-old mother in Ohio, says she was never the type to chant and march–until she was diagnosed with Stage 3 breast cancer shortly after she went on Medicaid following the expansion of the program under the Affordable Care Act.

They are among tens of thousands of newly engaged patients and their loved ones who were fighting to save Obamacare. The American Diabetes Association estimates that it has 15,000 new patient activists this year. The American Cancer Society’s Cancer Action Network says it has logged 19,000 new advocates since January. “Now we go to protests,” says Kerry Reed, 46, a Tennessee mom and longtime Republican voter who switched to Clinton in 2016 and has been covered under the ACA since 2014. She had rarely gotten involved in politics, but she’s now placing daily calls to her Senator and writing letters to the editor of her local paper. “I know you think you’re a Republican,” she tells her neighbors, “but this new care is going to affect you.”

Exactly how the Senate’s latest proposals will affect disabled and chronically ill kids and adults will vary by state and by the type of insurance families have. But experts agree that the heart of the issue is Medicaid. Both the House and the Senate proposals include steep cuts to future funding for Medicaid, an overwhelmingly popular federal program that covers 76 million Americans, including two-thirds of all nursing-home residents and 40% of the nation’s children. If you reduce federal Medicaid funding by as much as $834 billion over 10 years, as the House Republicans’ bill would, states will almost certainly be forced to cut some of the services they currently offer.

Both the White House and congressional Republicans who support the Senate bill say scaling back spending on Medicaid, which has grown to roughly 10% of the federal budget, is necessary. Such reductions, Republicans say, will force states to become more efficient, eliminate fraud and abuse, and serve the most deserving populations first. But health care experts say it will also compel states to make some tough decisions. Federal law requires that all state Medicaid programs cover certain populations, like impoverished children, disabled children and adults, mothers and the indigent elderly in need of nursing-home care, and certain services, like hospital care. As a result, states don’t have easy ways to cut large amounts of Medicaid spending without targeting optional programs. That includes one of the most expensive: the one that helps defray the cost of home aides and medical equipment that help severely disabled children and adults stay in their homes and communities, rather then being institutionalized.

“If you have a disabled child and Medicaid has paid for a personal care attendant to come to your house so your kid can get combed and bathed and you can have a shower–that will probably be cut,” says Andy Slavitt, the former acting administrator of the Centers for Medicare and Medicaid Services, a federal health agency. “Which means a lot more people will be institutionalized.”

Home and community care programs are, after all, very expensive, accounting for more than 25% of all Medicaid spending over the past decade, according to a 2016 federal government analysis. But they’re also transformative for families caring for disabled family members and children. According to the Kaiser Family Foundation, a nonpartisan health policy think tank, 44% of kids with special needs across the U.S. rely on Medicaid or other public insurance through state programs like these. Both Lorio and Michot depend on Louisiana’s Medicaid programs to get the trach supplies, home health aides and medical equipment that allow their 4-year-old sons to remain at home.

No politician wants to be responsible for kicking sick kids out of their homes. But reductions in Medicaid spending will force governors to make excruciating decisions, explains David Cutler, a health care economist at Harvard University. And that means excruciating choices: Do you cut services for children, or prenatal visits, or the amount paid for nursing homes for the elderly? “State budgets are too strapped already,” Cutler says.

Congressional Republicans who support the Senate bill say they have created safeguards for some of the most vulnerable populations. Those include exemptions for disabled people from needing to work in order to receive assistance and a carve-out for blind and disabled children, which would allow them to avoid being subject to certain limits on federal spending. “That’s a well-intentioned provision, but you have to read closely,” says Meg Comeau, a director at Boston University’s Catalyst Center, which has analyzed the Republican health plan.

While the description of the carve-out in the first Senate bill lacks detail, it will likely narrowly define what counts as a disability and may only apply to children who qualify under the stringent income standards of the federal disability program. It’s possible, for example, that both John Paul Lorio, who has Medicaid coupled with other optional state-based programs, and Gabriel Michot, who has private insurance through his father’s employer but also receives Medicaid-funded optional programs even though his family is above the income limit, could see the services they receive scaled back, eliminated or made more expensive through cost-sharing measures.

Patients and advocates are also alarmed by the GOP’s proposal to allow insurance companies to reinstate the lifetime coverage caps that were banned under the ACA. Without that ban on lifetime caps in place, people with complex medical needs who are covered by private insurance could blow through the limit on how much their insurers will pay after a prolonged stay at the hospital, leaving them essentially uninsurable for the rest of their lives–unless they reduce their income enough to qualify for Medicaid. Take Timmy Morrison, for example. He was born on Sept. 29, 2010, with a rare genetic condition called Opitz G/BBB syndrome, six days after the ACA’s ban on lifetime caps went into effect. He spent six months in the NICU, racking up a bill of more than $2 million, according to his mother, Michelle Morrison. If Timmy had been born six months earlier, the $1 million cap on Morrison’s employer-based insurance policy would have left him without coverage halfway through his NICU stay.

Some parent-advocates have seen the GOP stance on health care as a reason to question their party identity. Alison Chandra, who considered herself a Republican because of the party’s position on abortion, finds it hard to square that value for life with the GOP health care proposals. “I’ve always seen it as very black and white, like the Republicans are pro-life and I’m pro-life, so I guess I’m a Republican,” says Chandra, 33, a former pediatric nurse in New Jersey whose son Ethan, 3, has heterotaxy, a rare condition that caused him to be born with nine congenital heart defects, two left lungs and five spleens. While Chandra and Ethan are covered under her husband’s employer-based insurance, the return of lifetime caps would render Ethan virtually uninsurable. His care has already cost almost $2 million in just three years. “The party that would have crucified me for aborting my child now wants to make it impossible for me to keep him alive,” she says.

So Chandra has added political action into her daily routine of caring for Ethan. “Here’s my list: call the insurance company, call Congress, and then call the pharmacy and get the prescription refilled,” Chandra says. “We’ve been fighting since the moment we heard our kid’s diagnosis, since the moment they were born. This is just a regular day for us.”

Pastor James Brigman Jr. is taking that fight on the road. On July 7, he set out from his home in Rockingham, N.C., with water, a Bible and pictures of his daughter Lauren Faith, 9, who has cerebral palsy and uncontrollable seizures. It will take him almost two weeks to walk the roughly 350 miles to Capitol Hill to ask his Senators–Republicans Thom Tillis and Richard Burr–not to vote for any measure that would affect the state Medicaid program that covers Lauren Faith’s care.

“Lauren is never going to get any better,” Brigman says. “She can’t walk, so I walk for her. She can’t stand, so I stand for her. She can’t speak, so I speak for her.”

James Brigman appears along Highway 1 near Apex, NC on July 10, 2017 as his walks from his hometown of Rockingham, NC to Washington, DC to make his voice heard on healthcare in the US.Daymon Gardner for TIME

This is not the place Republicans expected to be in. Having campaigned for seven years on a promise to repeal the ACA and claw back federal spending, the party is at last in a position to deliver. Instead, they’ve been thwarted by an increasingly pitched, internecine battle over the future of the GOP brand.

On one side, conservative lawmakers and powerful benefactors like the Koch brothers are pushing to eliminate regulations and reduce outlays to programs like Medicaid. On the other side, constituents like the Trach Mommas and a powerful alliance of major medical and industry groups, including the American Medical Association, the AARP and the American Hospital Association, are fighting to safeguard those same programs. In the second week of July alone, the AARP and Save My Care, an advocacy group, spent nearly $2 million on broadcast, cable and radio spots targeting Republican Senators on the health care bill, according to Advertising Analytics, which tracks such spending. A handful of Republican governors, including Nevada’s Brian Sandoval, Ohio’s John Kasich and Massachusetts’ Charlie Baker, have crossed the aisle to oppose the first version of the Senate health care bill.

In attempting to make both sides happy, Republican lawmakers have spent the past few months performing something of a wobbling dance. The House passed a version of a new health care law in May, which would reduce federal Medicaid spending by more than $800 billion over 10 years, compared with current law. It effectively removed the signature Obamacare requirement that insurance companies offer coverage at similar rates to everyone, regardless of pre-existing conditions. The nonpartisan Congressional Budget Office estimated that the bill would leave 23 million more people without insurance after a decade, compared with current law. Trump championed the House bill in a televised Rose Garden ceremony, then later described it as “mean.”

Senate Republicans have followed a similar tack. Their draft, which borrowed heavily from the House plan, cut federal Medicaid spending by $772 billion over 10 years, allowed states to opt out of requiring insurers to cover basic medical benefits such as maternity care or prescription drugs, and eliminated the bulk of the Obamacare taxes on wealthy Americans. The CBO estimated the bill would leave 22 million Americans without insurance by 2026 compared to current law. To patient advocates, any bill resembling the House plan is a nonstarter. “We’ve seen three versions of this bill–all of them would be devastating for our kids,” says Michelle Morrison, who has brought her 6-year-old son Timmy to Capitol Hill half a dozen times as part of a group she co-founded called Little Lobbyists. “Unless they do a complete 180 from what they’ve been doing, it’s going to be bad.”

As McConnell prepared to unveil a new version of the Senate bill in mid-July, all signs pointed toward a similar proposal to what had come before. Concessions to Republican critics of the bill included an expected $45 billion pot of money to fight opioid addiction. McConnell also signaled a willingness to drop his earlier plan to cut Obamacare’s taxes on the wealthy.

These changes are unlikely to satisfy the newly activated parents and patients, who have been shaping the debate around the bills since the GOP’s first health plan was proposed in the House this spring. As the details of that plan emerged, town-hall meetings turned so angry that many Republicans have all but stopped holding them. Patient activists occupied the offices of Arizona Senator Jeff Flake and Colorado Senator Cory Gardner over the July 4 recess, and nearly 50 protesters in wheelchairs were arrested for protesting outside McConnell’s office on June 22. The TV star Jimmy Kimmel, whose young son Billy was born with a congenital heart condition, used his late-night show in May to urge lawmakers to consider the impact an ACA repeal could have on seriously ill children.

These protests have shaken lawmakers. Sustained local advocacy ahead of the House vote helped to sway many of the 20 Republicans who did not support the bill. New York Republican Dan Donovan says hearing from concerned constituents, like a family whose three children all have hemophilia, sealed his opposition to the bill. “Seeing those folks and hearing those stories and seeing the difficulties that families are going through really fortified my belief that I was doing the right thing,” Donovan tells TIME.

After 75 people protested outside the office of West Virginia Republican Senator Shelley Moore Capito on June 26, she announced that she could not support the Senate bill in its initial form. “I only see it through the lens of a vulnerable population who needs help, who I care about very deeply,” she later told Politico.

Activists are counting on the emotional appeal of their stories to continue to sway Senators. “How do you as a Republican lawmaker counter the argument ‘My child is sick and will die if you pass this bill’?” says Dana R. Fisher, a professor of sociology at the University of Maryland who studies protest and social movements. “It’s extremely difficult to pivot on that into any kind of political speak that doesn’t make you sound like an a–hole.”

That’s why groups like the Little Lobbyists have been pounding the pavement on Capitol Hill. “We’re not going to wait until there’s a bill passed to speak up,” says the group’s co-founder Elena Hung, whose 3-year-old daughter Xiomara was born with airway problems, chronic lung and kidney diseases and developmental delays. “If we wait to speak up, it’ll be too late.”

The Trach Mommas’ 25-hour drive from Louisiana was not easy. But after several panic attacks, feeding-tube mishaps and one little girl who spiked a fever and had to go to the ER, the group made it to the Hart Senate Office Building on July 10. They had an appointment to meet with a staffer for Bill Cassidy, a Republican Senator from their home state who is pushing for a compromise on health care that would allow some states to keep Obamacare. Once there, Michot and Lorio were told the staffer no longer had time to speak to them in person but could do a phone call later. The moms refused to leave, and eventually a member of Cassidy’s health care team appeared. She nodded politely as Lorio and Michot explained what drastic Medicaid cuts would mean for John Paul and Gabriel. Within 10 minutes, the meeting was over.

Still, the Mommas saw the trip as a success: a face-to-face meeting with a Cassidy staffer was their goal all along. But they were far from celebrating. They still owed the bus company more than $5,000 for the journey to D.C. And despite all their efforts, the Senate bill or another one just like it, they knew, could still pass. If it does become law, Lorio may enter another phase of political transformation. She says she won’t vote for any Republican–from her local representative to Trump–if they act to cut Medicaid. But she’ll still be friends with Michot.

–With reporting by KATIE REILLY/NEW YORK

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