With medical insurance often lacking, fund-raisers help the sick pay bills

Virtually every weekend around North Jersey, there’s a pasta supper or a pancake breakfast to benefit someone overwhelmed by medical bills. Friends and neighbors gather to help toddlers with devastating genetic conditions, teens felled by catastrophic accidents, parents leveled by rare cancers. Some have insurance, some are uninsured.

Their stories are part of the fabric of life, conveyed in fliers on doughnut-shop windows, on coin jars on the coffee shop counter, or on websites created by tech-savvy supporters.

In part, the fund-raisers are a natural outgrowth of an American health care system that has left nearly 50 million uninsured and another 29 million under-insured, with high copayments and deductibles. Not only do those struck by a life-threatening illness face big out-of-pocket costs on skimpy health plans, they may lose their jobs and income when they become too sick to work.

Some of these issues are addressed by the 2010 health care reform law, now facing a Supreme Court challenge. Others are not.

The most recent public beneficiaries of a fund-raising effort were Diandra Barreto, 24, of Hasbrouck Heaights and Michael Gallinella, 37, of Woodbridge, both uninsured. Their friends collected money — and secured a congressman’s help to arrange a federal loan — to airlift them back from the Bahamas, where they’d been grievously injured in a scooter crash late last month.

Fund-raisers have been held recently — or are ongoing — for a Hillsdale woman with a rare leukemia, a Dumont woman with lung cancer, a Lodi firefighter who underwent brain surgery, a Fair Lawn basketball player who suffered a cerebral hemorrhage, a River Vale toddler awaiting a kidney transplant and a Fair Lawn belly dancer fighting adrenal cancer. And those are only some of the planned events.

“It’s the paradox of American health care,” said Eric R. Wright, a medical sociologist and chairman of the public health department at Indiana University. Hospitals and doctors provide ever more advanced treatments, yet “people are holding bake sales and pancake breakfasts” to help pay for their care.
The weekly events — home-grown and amateur, like bar mitzvah or wedding receptions with a social mission — seem to be growing at a time when the nation is riveted over the future of President Obama’s sweeping reform of the health care system, which the Supreme Court justices are considering after three historic days of oral arguments. The Patient Protection and Affordable Care Act passed two years ago would expand Medicaid, impose new regulations on insurers, create state insurance exchanges and require most people to have health insurance.

For some of the fund-raising beneficiaries, the law’s provisions would change life dramatically — making it easier to buy and retain health coverage, for example, and assuring that there are fewer holes in that coverage. Yet, for others, reform will not bring relief. The woman who wants to try alternative therapies her insurance won’t cover for an incurable illness and the patient who needs help with the mortgage because she can’t keep working will still be asking for help.

Pasta, soccer blocks 

Friends and neighbors will still buy tickets to beefsteaks and pasta suppers to show “no one fights alone,” as the wristband for one recent dinner said. They’ll enter raffles for beauty makeovers and African drums to benefit the sick. They’ll pledge a dollar for each shot a soccer goalie “saves for Gavin,” and donate online through social networking sites.

“Americans are a very giving people as a whole,” said Wright. “We don’t mind giving money to a good thing.” But “we want to give directly — we want to see the tangible results of what we give.”

More than 370 people bought tickets to a gourmet pasta dinner earlier this year at St. John the Baptist Parish Center in Hillsdale to help Jody Winsuck Soluri. The 42-year-old mother of four suffered a recurrence of a rare type of leukemia last summer — two years after a bone-marrow transplant had appeared to beat it.

She has health insurance through her husband, but exhausted the family savings — money that was supposed to go to her kids’ college educations — to pay her portion of hospital, prescription drug and other costs related to her earlier treatment and last summer’s stem-cell transplant.

“I swear I could beat this disease, if I just had to worry about the cancer and not this stuff,” said Soluri, who before her illness was the chief financial officer at a law firm. She circulated from table to table at the dinner and found the support heartening. The dinner proceeds, she said, “will get me through about three months of mortgage and then back to reality.”

Another fund-raising effort focused on 2-year-old Gavin Scimeca who needs a new kidney. His family has been told by the Children’s Organ Transplant Association to anticipate about $150,000 in expenses that will not be covered, even with insurance — for things like transportation and prescription copayments. Gavin was born with a genetic kidney disease.
In one of the more inventive local fund-raising strategies, Sean McCann, the son of River Vale’s police chief, took up Gavin’s cause before his senior season as goalkeeper for the Park Ridge High School boys soccer team. He invited friends and family to stake a certain amount each time he blocked a shot on goal, calling his campaign “Saves for Gavin.” His sister pledged 10 cents each, while another donor promised $5 a save.
It turned out to be a record-breaking season for the athlete. In a single double-overtime scoreless tie, he made 26 saves.

His season total — 172 — ranked eighth in New Jersey. It also earned $28,450 for Gavin.
“I was shocked beyond belief,” McCann said.

Donations flowed through the Children’s Organ Transplant Association website, which has raised more than $1 million to help the families of various children, said its president, Rick Lofgren.

It’s not surprising that the Internet, now so commonly used to look up information about various illnesses, would also become a hub of fund raising. Websites like GiveForward and IndieGoGo provide platforms for many individual campaigns, including that of Sigi Nissimov, a professional belly dancer and the founder of Fair Lawn’s Life Movement Spirit and Dance Studio.

Now 42, she was diagnosed two years ago with adrenal cancer, for which there is no cure. She underwent surgery and chemotherapy, covered by the family’s insurance, and continued daily life as normally as she could with her husband and two children, she said. When the cancer returned last August, her oncologist gave her three to six months to live. It was a shattering moment.

She visited Michigan and California in search of help. One specialist offered exploratory surgery. Another suggested more rounds of chemotherapy. But “it wasn’t right,” she said, “in my heart it wasn’t right.” After much reflection, she said, she decided to consult with a variety of alternative medical practitioners and develop her own program, which would not be covered by insurance, even under Obama’s health-care plan.

“There are stories of people who have tried these alternative ways and have lived decades longer than what they were told,” she explains on her Web page. “I need to buy all organic foods, I need to pay the biochemist who is monitoring my blood levels, I need to fly to see the Chinese doctor who is advising me on what herbal medicines I should be taking.”

The campaign, “Against All Odds, A Belly Dancer is Fighting for Her Life,” has raised $20,359, so far.
She and her studio’s dancers have also been mainstays at a charity drummers’ circle organized annually by Drums from Heaven. People donate $20 — no experience necessary — to join the circle and drum or dance. This year, proceeds from one of the group’s raffles are to be dedicated to her medical needs.
She will also dance at the circle.

“I never stopped dancing,” she said. “Even when my legs were numb, and my hands were numb and I was without hair.”

The beneficiaries of such fund-raisers say they are grateful for more than the financial aid. The gathering of extended family, old school friends and even acquaintances from the community provides a powerful emotional lift — as they did for Frances Giordano during her battle against lung cancer.

At a dinner at the Dumont Knights of Columbus in late March organized by Giordano’s friends, one table was occupied by guys from the Dunkin’ Donuts who knew her only from her hasty coffee stops before work in the morning.

Giordano, whose copayments for treatment were more than she could afford, says she felt peace of mind afterward, even as she awaited another round of biopsy results.

“It doesn’t make me rich,” she said. “But there are wonderful people out there. Now I can focus on beating the cancer. If they didn’t do this, I don’t know what my next move would have been.”

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