Opposition To the Dismantling of the Affordable Care Act Involves "Little Lobbyists"

Senator Chuck Schumer, the Democratic leader, shook hands with Melanie Carrigg, a 5-year-old Medicaid recipient
from Arizona, before a news conference on health care this month. CreditJacquelyn Martin/Associated Press

‘Little Lobbyists’ Help Save the Health Care Law, for Now
WASHINGTON — Anna C. Corbin had not been involved in politics, had not even been to the Capitol before this year. But since March, she has made the two-hour drive here from her home in Hanover, Pa., 15 times so her sons, Jackson and Henry, could lobby against efforts to dismantle the Affordable Care Act.

Jackson, 12, and Henry, 9, have a genetic condition known as Noonan syndrome, which causes a bleeding disorder, short stature and digestion problems. They also have a new profession — “little lobbyists.”

In the long-running battle over health care, doctors, hospitals and insurance companies have spent millions of dollars this year. But some of the most effective advocacy has come from pint-size petitioners who spent nothing at all: children with serious medical needs who told their stories to members of Congress.

“We were often told that the kids were not voters,” Ms. Corbin said. “But they will have this genetic condition for the rest of their lives. They will be voters, and these laws will affect them. So it’s important for them to have a voice.”

Children like Jackson and Henry put a human face on the debate over insurance regulation, premium subsidies, Medicaid expansion and cost estimates by the Congressional Budget Office.

The American Medical Association, the American Hospital Association, America’s Health Insurance Plans and dozens of other industry groups lined up against the Republican repeal bills. But, lawmakers said, what really sank the legislation was the outpouring from constituents, and few were as influential as the little lobbyists who pleaded for their own lives and the lives of other children with special needs.

“They are fantastic,” said Senator Tim Kaine, Democrat of Virginia. “These kids and their parents demonstrated how catastrophic the Medicaid cuts would be. They really added value to this debate and helped us win.”

Rebecca A. Wood’s family has employer-sponsored health insurance, but under a federal waiver granted to the State of Virginia, Medicaid pays about $15,000 a year for items and services that are not covered by insurance. That matters to her daughter, Charlie Wood, 5, who was born more than three months early, weighed 1 pound 12 ounces and was in the neonatal intensive care unit of a hospital for 10 weeks.

Charlie has a mild form of cerebral palsy and developmental delays, has seen more than a half-dozen medical specialists and uses a feeding tube. She still started kindergarten in Charlottesville, Va., on time this year, but her mother said she saw another threat coming: The bills passed by the House and considered in the Senate would have made deep cuts in projected Medicaid spending, imposing an annual cap on federal payments to each state.

“After the presidential election, I knew that health care would be a huge issue,” Ms. Wood said. “I wanted people to know, when you cut health care, it affects many innocent people like my daughter. I wanted them to see the faces behind the cuts.”

“Without the Affordable Care Act,” Ms. Wood said, “Charlie would have exceeded her lifetime cap before ever coming home from the hospital and would have been uninsurable.”

The House Democratic leader, Nancy Pelosi of California, said the young lobbyists “have made all the difference in the world.” And she described the parents as formidable: “You do not want to stand in between one of these moms and the good health care of her child.”

The effort started when five families visited Senate offices in June for a day of lobbying.

“It took off from there,” said Elena Hung, a co-founder of the group, whose 3-year-old daughter, Xiomara, has chronic lung and kidney disease. Since then, nearly 300 families in 47 states have shared their stories with lawmakers through the group.

They are relieved that the Senate shelved plans for a vote last week, but fully expect the battle to continue. President Trump predicted that the Senate would try again in the first quarter of next year and said Republicans would “have the votes.”

Five-year-old Melanie Carrigg, from Tucson, visited 60 Senate offices and met with Senator Jeff Flake, Republican of Arizona, who ended up voting for the repeal bills in July.

Melanie, one of more than 34 million children covered by Medicaid, has Down syndrome and a heart defect and is deaf, said her mother, Austin G. Carrigg.

When the latest effort to repeal the Affordable Care Act collapsed in the Senate, Ms. Carrigg was happy. But she said: “I’m a realist. I know this fight is not over.”

Ms. Carrigg and her daughter visited the offices of two Republican senators who voted against the repeal bills in July, Susan Collins of Maine and Lisa Murkowski of Alaska.

“We have given information to their staff numerous times,” Ms. Carrigg said. “When you walk in and a staffer says, ‘Oh, they were just talking about you,’ you think, maybe we are making an impression. That has been my personal goal every time. I want them to remember my daughter’s face when they go on the floor and vote.”