YORK COUNTY, 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 D.C. and Harrisburg reaching out to legislators to voice their concern about proposed cuts to Medicaid.
Their mom, Anna Corbin, 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,’” Anna 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, digestive system and inability for their blood to clot.
It also means bills can pile up quickly between frequent emergency room visits, specialist visits and prescriptions, which can cost as much as $850 a month for a single medication, Anna said.
Jackson and Henry like riding bikes, Legos and superheros but have to be more careful than other kids. Jackson remembered a recent trip to the emergency room when he bruised his 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.
Vomiting and digestion is another major problem. There are good days and bad days, Anna 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 right now but could at any time become a serious problem, Anna 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. Anna 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 daycare in hopes 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, Anna said.
The first few years after the diagnosis, they had to sell furniture and other belongings so they didn’t have to choose between groceries or medicine, Anna said.
“We were $42,000 in credit card debt,” Anna 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,” Anna said.
Medicaid and PH-95
Through a friend, Anna 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.
In Pennsylvania, 34 percent of the state’s residents are insured under Medicaid and Medicare, according to the National Conference of State Legislators. That comes at a cost to states and the federal government, who both contribute to the Medicare and Medicaid programs. Spending for the two programs was in the trillions in 2015, according to Centers for Medicare and Medicaid Services.
The initial health care bill proposed by the Trump administration, which failed to pass the Senate, included $772 billion in cuts proposed to Medicaid over 10 years, according to an analysis from the Congressional Budget Office.
Marc Stier, the director of the Pennsylvania Budget and Policy Center, said the proposal to limit federal spending on traditional Medicaid by imposing per-capita caps on federal funds would cost the state anywhere between 10 and 30 billion over the first six years.
Jenny Englerth, the President and CEO of Family First Health, said the overall concern for those that are benefiting from the Medicaid system is that all versions of the proposed health care reform bills have contained cuts to Medicaid dollars, which means either fewer benefits or fewer beneficiaries.
“The bottom line is their coverage may or may not continue,” Englerth said.
Englerth said one of the other issues is the amount of money spent on health care. The challenge is finding a way to finance health care for everyone in the country, she 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.”
“(Little Lobbyists) is parents who are taking their children to Capitol Hill and saying, ‘Look at these kids; don’t take their care away,’” Anna said.
Jackson and Henry spent as much as two or three days a week in D.C. and Harrisburg reaching out to legislators, visiting 100 senators offices in one day during a recent trip and meeting with Pennsylvania Senator Bob Casey on another.
The Trump administration was unsuccessful in passing any of its proposed health care reform bills, something Anna said is a small victory for them.
“My ultimate goal is for people to not have to worry about health care and how they’re going to pay for it,” Anna said.
Anna said she would like to see the health care system become a single payer plan, in which a single public or quasi-public agency organizes health care financing.
She thinks the government needs to find a way to make health care more affordable for everyone. Until then, the battle isn’t over, she said.
Medicaid/Medicare quick facts
Medicaid is a joint federal and state program that, together with the Children’s Health Insurance Program, provides health coverage to over 72.5 million Americans, including children, pregnant women, parents, seniors and individuals with disabilities, according to medicaid.gov.
Medicare is a federal health insurance program for people who are 65 or older and certain younger people with disabilities, according to medicare.gov.
The Affordable Care Act is a health care reform law enacted in March 2010 that aimed to make health insurance available to more people and expanded the Medicaid program to cover all adults with income below 138 percent of the federal poverty level, according to medicaid.gov
Medicaid is jointly funded by the federal government and states, according to medicaid.gov.
Medicare is funded by a payroll tax, premiums and surtaxes from beneficiaries and general revenue, according to medicare.gov.
In Pennsylvania, 34 percent of the state’s residents are insured under Medicaid and Medicare, according to the National Conference of State Legislators.
Medicare spending was $646.2 billion in 2015 and Medicaid spending was $545.1 billion in 2015, according to Centers for Medicare and Medicaid Services.
Anna Corbin listens as her son Jackson, 11, talks about what it’s like to lobby legislators. Jackson and his brother, Henry, 9, recently visited the offices of all 100 United States Senators in one day.
Anna Corbin sits between her two sons, Jackson, left, and Henry, as they play with their dog, Eloise, inside their Hanover home. Henry, 9, and Jackson, 11, both have Noonan syndrome, a genetic disorder that affects various systems of the body.