Ellie and Townes White look like your typical 4-year-olds. Running around John Sevier Park on Tuesday, the twins climb to the top of slide, crawl inside a tunnel that makes a fun “hiding place,” and take turns trying out the zip line with the help of their mom.
That Ellie and Townes are happy and healthy after being born prematurely is the reason their mom, April White of Maryville, has been lobbying Congress to save the Affordable Care Act.
“After the election I got really concerned about what would happen to their health care coverage,” said White, 37. “It’s frustrating because there’s so much at stake for my kids.”
Ellie and Townes were born unexpectedly in May 2013, at 30 weeks gestation. They stayed in the Neonatal Intensive Care Unit at East Tennessee Children’s Hospital in Knoxville for more than a month and came home on apnea monitors for six months because they would stop breathing.
“Just room and board at Children’s was $250,000 each for their 37- and 39-day stays,” White said.
Since then both children have had appointments with specialists and rounds of physical and occupational therapies. Townes, who was born with a cleft lip, had three surgeries before he turned 1 and will need more surgery in the future, she added.
Although White was insured through her employer at the time of the twins’ birth, the Affordable Care Act prevents insurance companies from placing caps on benefits, she said. The health care bills penned by Republican representatives and senators both allow for the return of those spending caps.
“Right now I don’t have to worry about going bankrupt to give my son the care he needs, and they want to take that away,” White said. “When the bill was before the House, I wrote a three-page letter to Congressman (Jimmy) Duncan telling him how the ACA has helped us and protected us from financial ruin on top of alleviating my worry that my kids would be uninsurable in the future due to their prematurity or the results of their prematurity.”
White, who stays at home with the twins full time, has organized a number of health care-focused events this year, including one at the Knoxville offices of U.S. Sens. Lamar Alexander and Bob Corker, both R-Tenn., on July 18. Ellie and Townes have met the local staffs of Alexander, Corker and Duncan several times, she noted, but her husband and their father, Matt White, stays at home with the twins at night so that White can attend events, meetings and trainings.
On top of joining other Indivisible East Tennessee members at Vienna Coffee House on Sundays to write postcards to Blount County’s congressional delegation, the health care-related ones she hand-delivered to their staffs on July 18, White also urges her family members and friends to keep calling their members of Congress and takes people to visit their representatives’ and senators’ offices.
White finally got 15 minutes face to face with Duncan in late March.
“I didn’t think I would change his vote, but I thought he would at least give me the appearance of listening to me,” she said. “But once he knew why I was there, he said, ‘I can just tell you have a really left-wing view on this.’”
White also got to have a “pretty long” conversation with Corker outside the Blount County Republican Party’s Lincoln Day Dinner at William Blount High School in April, she said, when the senator came out to speak to those gathered outside the school.
“I think if we could get more people in front of him to have a dialogue, we might make real progress,” she said of Corker. “I felt like he listened to me. He thanked me for being well-informed. Believe me, I would love to be spending my nights after the kids go to bed relaxing or sleeping instead of reading wonky blogs, but too much is at stake.”
Showing up, speaking out
That’s a feeling echoed by the 30 people gathered outside Alexander’s and Corker’s Knoxville offices on July 18, chanting “Repair, Not Repeal,” and holding signs including “Bob voted to close rural hospitals,” “Bob voted to kick my mom out of the nursing home,” and “My child can’t get chemo … how are your tax breaks, Bob?”
“I think this is the biggest terrorist threat to our country,” said Sara Thompson of Sevier County. “Our lives are being terrorized by our own senators and representatives over health care.”
One woman at the gathering July 18 spoke of her father who survived a devastating stroke in 1982, cognizant but with no physical abilities. Another in a wheelchair told the group how a missed epidural caused her to fall a lot, shattering her hip.
White was told July 18 that only two to three people could come into the federal courthouse to meet with congressional staffers and, even then, they were allowed no farther than the lobby. The Daily Times attended that meeting, but was told by Alexander’s and Corker’s staff that constituent meetings are off the record.
“If they want to take the time to listen to what their constituents want, they can make this a priority,” White said, noting she worked for a senator and knows that members of Congress set the priorities for their staffs. “This is serious. We don’t play politics with people’s lives.”