At ages 9 and 11, boys are veteran health lobbyists

HANOVER, Pa. - Ask 11-year-old Jackson Corbin and 9-year-old Henry Corbin of Hanover why they are lobbying senators in Capitol Hill every week and they say, "We have to save our health care."

The brothers have spent time in Washington and Harrisburg reaching out to legislators to voice their concern about proposed cuts to Medicaid.

Their mother, Anna, remembers one lobbying trip when someone asked Jackson, "What would you say to someone who says you aren't an adult, you aren't a voter?"

"He said, 'Without health care, I might not make it to be an adult,' " their mother said.

Jackson and Henry are fighting to protect funds for Medicaid because without it, their family might not be able to afford health care. Both boys have Noonan syndrome, a genetic disorder that affects various systems of the body.

The disorder affects people differently. For Jackson and Henry, the biggest problems are with their heart, their digestive system, and inability for their blood to clot.

It also means bills can pile up quickly from frequent emergency room visits, specialist visits and prescriptions, which can cost as much as $850 a month for a single medication, Corbin said.

Jackson and Henry like riding bikes, and playing with Legos and superheros, but have to be more careful than other kids. Jackson remembered a recent trip to the emergency room when he bruised a leg falling off his bike.

"I remember I had to go to the hospital for a couple days, and I had to have the IV," Jackson said.

Digestion is another major problem. There are good days and bad days, their mother said. On the bad days, the boys could be up all night.

It also means a lot of monitoring and checking for symptoms of serious health problems. Henry has pulmonary stenosis of the heart, which doesn't affect him now but could at any time become a serious problem, Corbin said.

Jackson and Henry play an active role in taking care of themselves. They can tell you what conditions they have, what medicines they take, and what specialists they see.

"I make them take an active role in their care because I won't always be here," Anna said. "And that also means from a legislative standpoint."

The boys were first diagnosed in 2008.

The year before, Jackson had been hospitalized multiple times for fevers and vomiting.

The Corbins knew something was wrong and decided to get tests done. After many tests, the boys were diagnosed with Noonan. Their mother had already missed so many days of work from hospital trips that she decided to quit in order to take care of the boys. She had been working at Jackson's day care in hope she wouldn't have to miss as many days.

The bills hit fast. It wasn't just the medical costs, it was gas to travel to the hospital, food and prescriptions, she said.

The first few years after the diagnosis, they had to sell furniture and other belongings so they didn't have choose between groceries or medicine, Corbin said.

"We were $42,000 in credit card debt," she said. "We were about to lose the house, we had no money."

Anna said it was hard for her and her husband but also the boys.

"They remember the times we couldn't go to a birthday party because we didn't have enough money to buy a gift for a child," she said.

Through a friend, she found out about Medicaid and PH-95, which allows children in Pennsylvania with disabilities or conditions that limit their ability to perform basic functions to get medical assistance without consideration of the parents' income.

The Corbins are still insured under a primary insurance but rely on Medicaid to pick up the extra costs.

"This is a temporary help for us so we are able to send them to college," Anna said.

The attempts to repeal the Affordable Care Act and replace it with a new health care bill brought fear that they would once again struggle to afford the simple things like milk, Anna said.

The Corbins and their sons have spent the past year lobbying against efforts to repeal the ACA, most recently as part of the "Little Lobbyists."

The group, she said, is composed of parents who take "their children to Capitol Hill and saying, 'Look at these kids; Don't take their care away.' "

Jackson and Henry spent as much as two or three days a week in Washington and Harrisburg reaching out to legislators, visiting 100 senators' offices in one day during a recent trip.

"My ultimate goal," she said, "is for people to not have to worry about health care and how they're going to pay for it."