World · July 15, 2022

Bronx father dies of rare disease to undergo potential life-saving surgery after being denied 3 times

BRONX, New York (WABC) – A Bronx father of two, who has been repeatedly denied surgery on a rare disease, has now been approved for the potentially life-saving procedure in a revocation from his insurance company. .

Anthony Di Laura, 35, of Throggs Neck, has a rare disease called Pseudomixoma Peritonei, which is attacking his abdominal organs.

He was diagnosed in August 2020, just months after learning that he and his wife, Jackie Cucullo, would have their first child.

Di Laura underwent three surgeries to try to remove diseased tissue, but was found to be cancerous and began seven months of chemotherapy. Around the same time, Cucullo became pregnant with the couple’s second child. Neither surgery nor chemotherapy have been successful in the fight against disease and cancer.

“This cancer has made me diminish who I am and who I am,” a frail and pale Di Laura told Eyewitness News 7 On Your Side Investigates reporter Kristin Thorne. “And I’m fighting every day not to let it take control.”

Doctors recently told Di Laura that her best option might be a hospice.

Cucullo heard about a doctor at Cleveland Clinic in Ohio who had recently performed the country’s first multi-organ transplant on a Minnesota man who was dying of the same disease. The procedure involved removing the man’s diseased abdominal organs and replacing them with healthy ones.

Di Laura went to the Cleveland Clinic last spring and underwent more than two dozen tests to see if he would be eligible for the same procedure. In Di Laura’s case, the doctor removed the stomach, large intestine, small intestine, and spleen and replaced them with healthy organs.

On April 21, while still in Ohio, the clinic informed Di Laura that he had been approved for the surgery.

“It was the biggest relief show,” he said.

Soon after, Di Laura’s insurance, Empire BlueCross BlueShield, denied the procedure calling it “investigative”.

“Everything in life could be considered experimental,” Cucullo said. “How can we make progress in the medical field? This has to happen.”

Di Laura challenged the decision. It was denied again and twice more after, despite the fact that the Cleveland Clinic surgeon wrote to the Empire to express his belief that the surgery was medically necessary to save Di Laura’s life. Cucullo said the doctor also spoke to Empire doctors.

Empire wrote in their denial letters to Di Laura that “medical studies do not show that this surgery is safe or will improve your health in the short or long term if there has been this kind of spread. We also received an opinion. from an external doctor to our health plan. This doctor treats people with your condition. This doctor agrees that medical studies do not prove that this surgery is safe or will improve your health in the short or long term. “

Empire sent its clinical guide to Eyewitness News stating that a “multi-visceral” transplant, such as the one requested by Di Laura, is contraindicated for patients with metastatic cancer, such as Di Laura.

Empire said multiple outside surgeons looked into Di Laura’s request.

“The external reviewers considered several articles in the published and peer-reviewed literature – including at least one article written by the treating surgeon – and also reviewed a couple of the abstracts submitted by the surgeon with this request,” the company said in a report. Note.

However, in a statement Thursday, Empire overturned the decision and said it would now cover the procedure with the surgeon at the Cleveland Clinic.

“Together with Mr. Di Laura’s medical team, our clinical team decided to cover Mr. Di Laura’s procedure with the Cleveland Clinic surgeon. The transplant surgeon provided additional information to show that this procedure has shown promising results in UK clinical cases and may be the only option left that could improve health outcomes for Mr Di Laura. We will continue to support him and his family as we move forward. “

Prior to Empire’s cancellation, because they had rejected Di Laura’s appeal three times, Di Laura’s only recourse was to file an urgent appeal with the New York State Department of Financial Services. Di Laura had introduced him this week.

“Who are these people who will now review my husband’s life?” Cuckoo said.

Di Laura said she has abdominal pain 24/7. She has to feed partially through a tube and has a tube that comes out of her abdomen to drain fluid that continually builds up throughout the day due to the disease.

Cucullo said she had been told by the Cleveland Clinic that if they had to perform the surgery out of their own pocket it would cost between $ 500,000 and $ 1 million.

The family has started a GoFundMe campaign to raise money for that potential cost and any other treatment Di Laura may face.

READ ALSO | American Airlines changes the family’s flight to another country, asks them to pay $ 30,000, the passenger says

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