Prompted by the six-figure medical bills facing a Linthicum family in their effort to save their son's life, an Anne Arundel County legislator has proposed creating a state fund to cover out-of-pocket medical expenses of children being treated for catastrophic illnesses.
The measure, still being formulated, would let Maryland families turn to a state fund for help with medical costs not reimbursed by insurance for a child with a life-threatening condition.
Del. Theodore J. Sophocleus, a Linthicum Democrat, said he would like to introduce a bill this General Assembly session, with support from other legislators.
Behind the idea is the devastating illness of 9-year-old Brendan "Boomer" Hewes, who in August received a bone-marrow transplant from his sister and chemotherapy in hopes of curing his aplastic anemia. The autoimmune disorder occurs when bone marrow fails to produce life-sustaining blood cells; without immediate intervention, it generally is fatal.
So far, medical fees since Boomer's diagnosis in June top $500,000, with the bulk paid by insurance. But many invoices, some dating to the transplant, have yet to arrive, said Alicia Hewes, the boy's mother. Routine care and medicines run several thousand dollars a month.
But that, she said, can be dwarfed by the medical costs for children suffering from other diseases.
Extended family, friends and the community soon will have raised close to $100,000 toward Boomer's care, without which the family would be financially ravaged. Relatives and friends also completed a makeover of the Hewes' home last summer so that Boomer, his immune system fragile from the transplant, could recuperate in a sanitized house.
"But there are so many people out there who don't have so many friends and family to help," Alicia Hewes said.
Sophocleus agreed: "I don't know many people here who could pay $100,000, $200,000 and up."
The delegate said he would like Maryland to have a fund similar to those in four other states, including New Jersey and Massachusetts, but that it should probably be funded differently.
Those states' programs are funded by an annual $1-per- worker tax on businesses already paying into state unemployment compensation funds. Sophocleus, a former pharmacy owner, said he is sensitive to raising taxes on businesses. So are business representatives.
While the goal of creating a safety net seems worthy, targeting businesses to fund it "will create concern among the business community," said Robert W. Burdon, president and chief executive officer of the Annapolis and Anne Arundel County Chamber of Commerce.
Sophocleus said he is also looking at other potential funding mechanisms.
Parents of child patients would apply for grants from the fund, though how many people might be affected or seek to apply is unknown. A panel would review applications and decide on awards. Sophocleus said he envisions a fund of several hundred thousand dollars. Applicants could seek money year after year.
"I think it would be fantastic," said Alicia Hewes. "The families that are going through this - it would be something that could ease their minds. You've got so much going on," such as appointments, treatments, and a need to be with the sick child while not neglecting other family responsibilities. "You're watching your son or daughter be so ill, and you are worrying about this enormous medical bill."
The idea came from her friend Christina McVey of Linthicum, who said she researched the other states' funds after an exhaustive search for a state program to help pay her friend's mounting medical bills. But the Heweses qualified for none because they have insurance and are not on public assistance.
McVey pitched the fund to hundreds of people at an October fund-raiser for Boomer. The event was attended by Sophocleus - who has known Boomer's father, David Hewes, for many years - and other officials.
"I don't think you have to put it as a tax on businesses," McVey said, suggesting a checkoff similar to the one that allows voluntary contributions of state income tax refunds. "Let the people pay it, a $1 donation to the catastrophic illness and relief fund. That's an option. ... The possibilities are endless."
On top of the emotional stress and hefty bills comes the likely need for a parent to be with the youngster all the time. To take care of Boomer and keep him in as germ-free a setting as possible, Hewes quit providing in-home day care for other children, costing the family $30,000 a year just when the income was most needed.
The fourth-grader is tutored and requires a precise drug regimen and weekly medical testing; he has to be watched for minute health changes to ensure his weakened immune system is recovering, and for signs of infection. He has weathered high fevers and infections, and recovery from the transplant, which takes a year, seems promising, his mother said.
Similarly, Sophocleus said, hospitals, physicians, laboratories and rehabilitation centers are burdened by lost income, even as they continue to provide treatment.
"It's a tough scenario. It breaks my heart," Sophocleus said. "You don't know who is going to need it."