Little-known East Hampton fund helps people with catastrophic illnesses

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For more than 20 years, a small organization has been quietly paying the medical bills of people who have catastrophic illnesses in the East Hampton area and lack medical insurance to cover the costs or face additional costs insurance doesn’t cover. The fund, known as the Catastrophic Illness Fund, was started sometime in the mid to late 1980s and its first candidate was a woman who needed a kidney transplant.

The fund usually pays only medical bills but it has covered other expenses, such as the gasoline used by a cancer patient to fill up for the drive between her home to the hospital where she received treatments, which were covered by her insurance.

“Our mission is to assist in paying medical bills for people who have catastrophic illnesses. It devastates people when they get these bills,” said Executive Director Mae Harden.

The fund, which relies strictly on private donations, was started by Rudy DeSanti, former owner of Dreesen’s Market. He was quickly joined by former East Hampton resident Richard Hoadley and Alex Walter, a local retired businessman, and later by Phil Tutino, who now serves as treasurer. Mr. DeSanti, Mr. Walter and Mr. Tutino make up the current board.

The presence of the fund is striking in that it has had little if any publicity and, outside of some doctors and social workers in the area, very few people know that it exists. Meanwhile, readers of this and other newspapers are well aware there has been a surge in private fund-raisers—and the publicity associated with them—in recent years as friends and neighbors rally to help someone facing a serious and costly illness.

The people who organize those efforts appear unaware of the fund’s existence. Mr. DeSanti said he hopes the fund can help with cases that otherwise would be covered by these local, individual benefits. “We would seriously consider taking over some of these cases as long as the illnesses are catastrophic,” he said.

Ms. Harden described catastrophic illness as any that threatens life, requires hospitalization, and generates “exorbitant” bills.

Mr. DeSanti said the organization calls itself a non-profit, but does not have 501c3 corporation non-profit status, so donations are currently not tax deductible.

The records of the organization were locked in storage, he said, so he described the origins of the organization from memory.

“The idea for the organization started around 1985 when it was brought to my attention by some people in the community who thought that help should be there for people with catastrophic illnesses,” he recalled last week. “We started out low-key by getting in touch with local doctors to let them know this fund was available.”

People with qualifying illnesses are asked to submit an application form.

“We have a two-page application with benign questions such as what are you having a problem paying for, who referred you, and how much do you need. People are very honest about it,” said Ms. Harden, who was a nurse at Southampton Hospital for 30 years until her retirement in 1998. She became executive director of the fund in 1998. Since then, the organization has helped about 25 people, she said.

“People are often embarrassed to ask for help, but I tell them the money is there to help them,” she said.

Once the application is in, Ms. Harden investigates the bills.

“I ask for a copy of the bills and then I call the doctor or the insurance company. If someone is behind in payments, I ask them to please not put them in arrears, that the bill or part of it may be paid,” she continued.

Once she has investigated a bill, she turns it over to the board to make a decision on whether it will cover the whole bill or just part of it.

Over the years, the organization has helped in ways large and small.

In one case, a young man confined to a wheelchair with Lou Gehrig’s disease needed a shower chair. The fund covered that.

Another case involved a woman who had breast cancer, but the doctor wouldn’t start the chemotherapy without her having her teeth fixed. Her Medicare would cover the chemotherapy but not the dental work. So Ms. Harden got to work and found a dentist who reduced the charge for the dental work by $2,000. The fund donated the rest of the charges.

The fund is strictly for catastrophic illnesses, according to Ms. Harden. She recently had to turn down a woman who called her a month ago and said she was having trouble paying her regular bills. “She wanted us to pay the bills and for her food and we couldn’t do that,” Ms. Harden said.

Mr. DeSanti declined to say how much money is in the fund, but Ms. Harden said when she first became executive director, she sent out donation request letters to 500 people and quickly amassed $52,000. Since she has been in charge, the fund has allocated about $20,000, she said.

The number of contributors to the fund has dwindled in recent years to two organizations that faithfully contribute every year, she said. She declined to name them.

The organization needs donations, both Ms. Harden and Mr. DeSanti said when they were the featured speakers at the Rotary Club of East Hampton’s Monday night regular meeting and dinner.

If anyone believes they are eligible for the fund or wishes to contribute, they should contact Ms. Harden at 329-3418.

“I like to think we have saved a few lives here and there,” Mr. DeSanti told the Rotary Club gathering.

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