Families take a risky road trip to save their health care

Kids make journey to confront lawmakers
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Story highlights

  • Adults, kids with disabilities traveled from Louisiana to Washington to speak against health care reform
  • CNN exclusively covered the risky trip, which involved trach changes, high fevers and tears

(CNN)Angéla Lorio and Jessica Michot turned their faces toward the summer sky. They stood side-by-side on the front steps of the Republican National Committee (RNC) building in Washington on Monday and took deep breaths.

Tilting their heads down under the beaming sun, they started to shout: "Hey, hey! Ho, ho! Medicaid cuts have got to go!"
The two women led a crowd of dozens of protesters in a chant.
    It was a typical 89-degree afternoon. DC staffers walked past on their lunch breaks, watching the action from behind their Ray-Ban sunglasses.
    Becky Ogle knocks on a window of the Republican National Commitee headquarters with her prosthetic leg as she protests proposed cuts to Medicaid.
    As the crowd of children and adults continued to chant in unison, Lorio and Michot glanced at each other. It was a moment that came on the heels of a long and harrowing journey.

    'Trach Mamas' stand up for their sons

    Lorio is a politically conservative Catholic from New Orleans who voted for Donald Trump in November. Michot is a politically liberal Lutheran from Laplace, Louisiana, who voted for Hillary Clinton.
    Despite their differences, the women joined forces over the weekend to take a stand against Senate Republicans' health care bill, which proposes deep cuts in federal spending on Medicaid.
    The dynamic duo organized an eventful road trip from Baton Rouge to Washington to protest health care reform -- and along the way, they managed medical scares and rode a wave of emotions.
    The Senate moved forward last month with its proposal to replace the Affordable Care Act. Then, in five days, Lorio, 43, and Michot, 33, organized their plans for a group of children and adults with disabilities to travel by charter bus to the Republican National Committee building, near the Capitol.
    Neal Lorio hands a homemade sign to a charter bus driver as he boards with other families on their way to Washington.
    For the roughly 24-hour bus ride, Lorio and Michot brought something else they have in common: 4-year-old sons.
    Lorio's son, John Paul, and Michot's son, Gabriel, were both born early at 27 weeks, which caused complex health conditions.
    Gabriel was diagnosed with a host of lung problems, including bronchopulmonary dysplasia, which makes it hard for him to breathe on his own, Michot said.
    John Paul had an airway issue, not a lung one. His trachea was not fully developed, a condition called tracheomalacia. He shows signs of mild cerebral palsy and has difficulty keeping his balance.
    Both boys live with a breathing tube, called a trach, surgically placed at the front of their neck to help them breathe.
    Their medical needs, from trachs to feeding tubes, turned the road trip into a risky voyage. But Lorio and Michot -- who cofounded the organization Trach Mamas of Louisiana last year -- agreed that the voyage was well worth the peril.
    Gabe Michot, 4, holds his mother's arm as he sleeps on the bus.
    The children's caretaking needs will be affected if Medicaid gets drastically cut, Lorio said. "It's not what they're cutting; it's who they're cutting."
    Michot said that for Gabriel, such cuts could mean life or death. She knows this firsthand because Gabriel was born with a twin, Michael, who died when he was about a year old, and she doesn't want to experience that pain again.
    "Without Medicaid, he won't have a ventilator," Michot explained her fear.
    As a storm brewed in a moody sky above Baton Rouge on Saturday morning, Lorio frantically packed supplies for the bus ride. Her husband, Neal Lorio, helped carry bags while John Paul played in the living room on a soft blue mat.
    John Paul found two small American flags perched by the couch. He wrapped his tiny fingers around the flags and waved them in the air. His big bright eyes, framed by blue glasses, twinkled with glee.
    "He's got a really sunny disposition," said Hope Scott, a direct service worker who has helped the Lorio family care for John Paul since he was 6 months old and who was at their home as they packed for the trip.
    "It's amazing to see him, under his circumstances, enjoying life the way he does," she said, looking lovingly at John Paul.
    Without Medicaid, however, the family could no longer afford Scott's assistance, Lorio said.
    The Lorio family car was packed with feeding tubes, feeding formula, a heart rate monitor and other medical equipment for John Paul.
    "Everything with a child that has special needs is extra," Scott said. "You have to be prepared. You never know when something's going to happen. He's been perfectly fine one minute ... and then all of a sudden he's got a mucus plug in his trach, and you can't tell what's going on."
    Scott stood on the family's front porch and waved goodbye as the Lorio trio -- mother, father and son -- drove off to board the charter bus to DC.

    'First do no harm'

    A couple of physicians who helped raise funds for the road trip visited the bus departure site to see off the 35 passengers.
    Dr. Kiersta Kurtz-Burke, an instructor of clinical medicine at Louisiana State University School of Medicine in New Orleans, helped raise money for the road trip but couldn't participate in the journey due to her schedule.
    "When we say, 'first do no harm,' most of us have really seen that in a way of just taking care of a patient in that moment, in the hospital or in the clinic," Kurtz-Burke said of physicians' Hippocratic Oath.
    "But we're seeing with this legislation, the overall picture is that there are health care needs being threatened on a bigger level, on a national level, and that's also our responsibility, too," she said.
    Lorio brought on the bus a sign that said "1st do no harm."
    The nonprofit Southwest Louisiana Independence Center also financially contributed to the road trip, and three of the center's representatives joined the bus ride, including assistant director Rocky Fuselier.
    Wearing a SLIC T-shirt, Fuselier used his wheelchair to board the bus with his colleagues. About 34 years ago, when Fuselier was 19, he was paralyzed from the shoulders down after a diving accident at Ouiska Chitto Creek in Louisiana.
    "I think it's important that the government, here in Washington, works together," Fuselier said of health care. "This is directly about the people."
    All of the families on the bus said they were deeply concerned by the Senate's health care bill, currently titled the Better Care Reconciliation Act.
    The bill is estimated to reduce federal Medicaid spending by 35% in 2036, and support for Americans with disabilities is among the services expected to diminish.
    Some Republican lawmakers behind the bill have told Americans that the needs of patients with pre-existing conditions will be addressed. But some parents on the bus ride, including Aimee Diez, have their doubts.
    SLIC assistant director Rocky Fuselier boards the bus in a wheel chair.
    Diez and her husband, Ronald's, 13-month-old daughter, Chasely, was born with what doctors suspect to be an undiagnosed genetic syndrome. Among Chasely's health issues are abnormalities with her brain, digestive system, and hands and feet.
    "Her future is so dependent upon Medicaid, and I wouldn't even attempt to take the chance, or take (lawmakers') word for it, because many times before, people have not stuck to their word," the Napoleonville, Louisiana-based mother said of some lawmakers' comments on pre-existing conditions.
    "Any cuts to Medicaid would be detrimental to my baby's future and her life, and we just need to keep Medicaid the way it is," Diez said.
    "It pays for her ventilator supplies. She could not breathe without it," she said. "It pays for her feeding tube and feeding pump supplies. It helps with nursing, and I could not care for her 24 hours a day, seven days a week alone."
    Diez's love for Chasely was evident Saturday night, when Diez noticed that her fragile daughter had a 102-degree fever. The cause of the fever could have been any one of myriad factors, Diez said. Chasely has multiple tubes and shunts, including one in her brain that stops fluid from building up, and they can get easily infected.
    Chasely Diez is treated for a high fever during the overnight bus trip.
    Diez suspected that the fever could be an unrelated viral illness that would go away on its own, but Lorio, who organized the bus ride, still searched for nearby children's hospitals just in case Chasely's condition turned serious.
    Chasely's fever went down after she was given an anti-inflammatory, and Diez, with tears in her eyes, said she didn't regret bringing her daughter on the road trip.
    "We want (lawmakers) to actually see her face and see that, yes, she does depend on the ventilator, but she is not in a bed and has no neurological function. She has neurological function. We want them to see that she is a life, and this life is at stake," Diez said.
    Lorio also had no regrets about bringing her son, John Paul, on the journey, despite facing a medical scare of her own.
    On Saturday afternoon, John Paul suddenly became fatigued and started coughing aggressively.
    "He never coughs like this," Lorio said while holding her son. "I don't know why he's coughing this much. ... Who's got oxygen close by?"
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    John Paul's eyes fluttered open and closed. He vomited, and a stream of his bodily fluids flowed down Lorio's leg as she cradled her son in her lap.
    Diez and Michot rushed to the pair's aid, wiping the fluids off the floor and helping Lorio change John Paul's trach tube, which was oozing with secretions.
    The incident occurred shortly after John Paul was fed, and "basically, he didn't tolerate it," Lorio said. He quickly recovered his cheerful demeanor after the trach change and some rest.
    Despite the various medical incidents, the bus continued to carry the Medicaid activists to the nation's capital.
    Medicaid is keeping Lillian DeJean's family from going bankrupt, she said. "I really shouldn't have to deal with this. I'm 15 years old. It's not exactly a common thing for a 15-year-old to be doing on a weekend," she said of the road trip.
    Last year, Medicaid paid about $60,000 of Lillian's medical expenses, said her mother, Nicole. Lillian, who lives in Lafayette with her parents, has a mitochondrial disease that impacts structures in her cells that are responsible for providing energy.
    Lillian DeJean, 15, and her mother, Nicole, have dinner at The Varsity during a pit stop in Atlanta.
    "You're not just cutting Medicaid, but you're cutting a lot of people's access to independent living," Lillian said on the bus.
    "In the future, if I have Medicaid, I'll be able to live independently because of my waiver and because of the insurance coverage," she said. "Also, Medicaid helps my family stay afloat right now. It's not just the future we're talking about but the present."

    Moved to tears

    As the road trip continued, Lorio played the iconic ballad "We Shall Overcome" over a microphone on the bus.
    The lyrics swept across the bus, and so did a wave of emotion, leaving passengers such as Elaine Harmon with tears streaming down their faces.
    Harmon stood next to her 18-year-old son, Marcus Johnson, who sat in a wheelchair, with her hand on his shoulder. He smiled at her as she sang, "Deep in my heart, I do believe, we shall overcome someday."
    Elaine Harmon sings "We Shall Overcome" with her 18-year-old son, Marcus Johnson.
    A mishap during a hernia surgery at 2 years old left Marcus with developmental disabilities. Harmon now relies on Medicaid for an in-home nurse to help care for him.
    "We represent thousands of people who are on waiting lists to get services, any type of service, in their house. We're here to bring awareness that this needs to be fixed, not cut out," Harmon said.
    Marcus, who follows the news closely, wanted to visit DC last year to speak out against proposals to cut Medicaid, Harmon said.
    "He said, 'Momma, I need to go to that White House, and I need to go talk to people so they can help us.' And I said, 'Marcus, just keep giving it to God,' " Harmon said. Now, about a year later, they finally made their appearance in DC.
    Harmon said she believes that it is "inhumane" that activists such as her son have to travel to show politicians they are disabled and impacted by changes in policies, even though a physician's letter can document a disability. That's something Marcus questioned at a young age, she said.
    "He always did say, even (when he was) small, 'Why do we have to show them we're disabled to get help?' " Harmon said. "That is an inhumane act that someone has to go and show you what a document is already telling you."
    The moment "We Shall Overcome" came to an end, the bus approached Birmingham, Alabama, city limits, on its way to Washington.
    The bus ride continued overnight Saturday with little additional drama. The families arrived in DC on Sunday and spent the night at a motel.

    'I'm a Republican! I'm a Republican!'

    Monday morning, as sunshine beamed through the windows of the Holiday Inn where the activists had slept, excitement -- and anxiety -- filled the air.
    The group gathered to depart for the RNC building, but Diez and her daughter, Chasely, stayed behind.
    Chasely's body temperature went back up to just over 102 degrees, and Diez tearfully took her to Children's National Medical Center in DC, where doctors diagnosed her with an ear infection.
    After wishing Chasely well, the other activists embarked on their mission.
    As the bus stopped about a block from the RNC building, Michot started to put sunscreen on Gabriel. John Paul found one of his American flags and waved it in the air. They were ready for showtime.
    Neal and Angela Lorio visit Louisiana Sen. Bill Cassidy's office in Washington with their 4-year-old son, John Paul Lorio, to discuss Medicaid cuts.
    "Hey, hey! Ho, ho! Medicaid cuts have got to go," Lorio and others yelled at the front doors of the RNC building.
    She said she saw a security guard lock the doors as the group approached. No one could get in, and no one could get out, but silhouettes of passersby within the building could be seen through the front door windows.
    "I'm a Republican! I'm a Republican!" Lorio mouthed through the door, with frustration, at the passing shadows. "I'm a Republican!"
    A spokeswoman for the RNC said in a statement Monday that "Republicans continue to work to provide greater choice and control for individuals with disabilities, including reforming our health care system to ensure every American has affordable and accessible health care."
    Monday wasn't the first time Lorio and many of the others have spoken out about health care reform proposals.
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    Last month, Lorio, Michot and other members of Trach Mamas of Louisiana attended a town hall meeting. Louisiana Sen. Bill Cassidy, who is also a doctor, hosted the town hall in Baton Rouge.
    Lorio said he did not call on their group to speak at the meeting. However, while in DC on Monday, a staffer from Cassidy's office met with Lorio, Michot and other activists as they shared their concerns.
    In a statement Monday, Cassidy spokesman Ty Bofferding said that "It is important to Senator Cassidy to make himself available to constituents -- holding numerous town halls across Louisiana. He does his best to answer as many questions as possible during those meetings, but cannot always get to everyone in the limited time available. A member of our staff spoke with the Louisiana constituents in DC and is passing their concerns along to the senator."
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    Cassidy recently has been pointing to alternative health care legislation that he and other senators have introduced, called the Patient Freedom Act.
    As the DC protest came to an end, Lorio rallied the group back on to the charter bus. Though the protests are finished, their risky road trip continues.
    "Until we're back safely and everybody is safely back home in Louisiana, I have to remain vigilant," she said. "Until everybody's safe back in their homes, I will be on edge."