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Friends of the Clinical Center Fills Gaps for Patients
By Jane DeMouy
At 11 a.m. any day of the week, Christine Brake, executive director of the Friends of the Clinical Center (FOCC), is likely to be considering a request from a Clinical Center social worker. A patient from Michigan has been unable to work during his 3-month treatment at NIH, and has no money for rent and utilities at home. The Patient Emergency Fund can't handle needs like this. Can FOCC help?
Brake reviews the outstanding bills, any previous help to the patient and seeks a decision from the FOCC board, most of them volunteers who work at NIH. If the answer is yes, as it most often is, a check can be sent out directly to the landlord or utility company within 24 hours.
Families are often overcome with gratitude. "They're just amazed this could happen. But that's what we're here for to be a bridge for people with financial emergencies stemming from their treatment at NIH," Brake says.
With an annual budget of under $80,000, the FOCC is the smallest and probably the least-known NIH charity. "People often confuse us with the Children's Inn," adds Brake. The Patient Emergency Fund provides help with bare essentials such as travel money or emergency cash for food, but can't address the broader needs of families who have lost income because the breadwinner got sick or because of unusual illness-related expenses. When there's nowhere else to turn, CC social workers go to the Friends, a CFC-supported charity.
In the past year, FOCC has paid rent, phone bills, car payments and travel for a mother who needed to come to NIH to escort her disabled son home after his treatment. When an African boy needed a wheelchair, FOCC found a donor and paid the shipping charges to the boy's home country. Patients leaving an alcohol abuse protocol usually transition back to the community through a halfway house. FOCC often covers the 2 months' rent. They picked up the tab for storage of personal effects for a homeless woman being treated for terminal cancer, and made it possible for a family from the Dominican Republic to spend time with their terminally ill son in a rented apartment near NIH.
"The Friends of the Clinical Center was a godsend to us," says Lynn Muska, whose husband, Steve, was diagnosed with melanoma in 2002. He was first treated at Johns Hopkins in their home city, Baltimore. Because Steve's surgeon, Julie Lange, was a former NIH fellow, she and Steve's oncologist suggested an NIH protocol when the cancer returned in 2003.
"I had no idea what NIH did before we came here. I've never seen a hospital run like this place is," says Lynn. "The dedication is incredible. I tell everybody how wonderful NIH is." The Muskas are a perfect example of how financial disaster can strike a second blow after a diagnosis of serious illness.
Steve Muska's illness cost him a lot of time off from his job as IT director for a small company. Eventually, he was laid off, just 2 months before more tumors came to light. After he completed an NCI protocol, a PET scan revealed two tumors in his bowel. Lynn Muska is CFO for the same company, but her travel to Bethesda and a downturn in business reduced her income substantially, just when they needed it most. Steve couldn't collect unemployment because he wasn't capable of looking for work, a requirement for unemployment support.
"We have a pretty healthy mortgage," Lynn says, largely because they remodeled their house to accommodate Steve's aging mother, who moved in with them 7 months before Steve's melanoma was diagnosed. "Steve couldn't work. My pay was cut, gas prices were going up and the mortgage, car and homeowner's insurance were all due at the same time. We were really feeling the crunch. If we had had to pay for Steve's medical supplies, I'd be selling the house." It was an FOCC moment. The Friends came through with a mortgage payment of nearly $1,600.
"We had always been so blessed. We never thought we'd need money, but God has sent so many wonderful people to help us out," Lynn Muska says, holding back tears. "I hate to ask for help unless I can return it at some point," she adds. "When we're working again, FOCC goes right to the top of our list of contributions."
Steve had to spend Christmas at NIH and Lynn needs work with a better salary in the new year. But the new NCI protocol he's just completed has shown success in shrinking tumors, and Lynn will find a new job when Steve's better, she says. "NIH keeps our hope alive. We met a patient who's been coming to NIH for 22 years. She hasn't beaten the cancer, but the cancer hasn't beaten her. We feel Steve's got a good chance."
FOCC gets about a third of its budget from CFC contributions. The rest comes from an annual golf tournament and fund-raisers run by the R&W such as the NIH Outdoor Film Fest.
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