Anthony Di Laura, 35, of Throg’s Neck, has a rare disease called pseudomyxoma peritonei, which is attacking his abdominal organs.
He was diagnosed in August 2020, just months after finding out that he and his wife, Jackie Kukulo, were about to have their first child.
Di Laura underwent three surgeries to try to remove the diseased tissue, but it was found to be cancerous and she began seven months of chemotherapy. Around the same time, Kukulo became pregnant with the couple’s second child. Neither surgery nor chemotherapy was successful in fighting the disease and cancer.
“This cancer has reduced me to who I am and my existence,” a frail, pale Di Laura told Eyewitness News 7 On Your Side Investigates reporter Kristin Thorne. “And I’m fighting every day not to let it control her.”
Doctors recently told Di Laura that her best option might be hospice.
Kukulo heard about a doctor at the Cleveland Clinic in Ohio who had recently performed the nation’s first multi-organ transplant on a Minnesota man who died of the same disease. The procedure involved removing the diseased abdominal organs of the man and replacing them with healthy organs.
Di Laura traveled to the Cleveland Clinic last spring to do more than two dozen tests to see if he would qualify for the same procedure. In Di Laura’s case, the doctor will remove her stomach, large intestine, small intestine and spleen and replace them with healthy organs.
On April 21, while in Ohio, the clinic informed Di Laura that he had been cleared for surgery.
“It was the biggest sigh of relief,” he said.
Soon after, Di Laura’s insurance, Empire Bluecross BlueShield, denied the process, calling it “investigative”.
“Everything in life can be considered investigative,” Kukulo said. “How do we move forward in the medical field? It has to happen.”
Di Laura appealed the decision. Despite the fact that surgeons at the Cleveland Clinic wrote to Empire expressing their belief that the surgery was medically necessary to save Di Laura’s life, it was denied again and again after that. Kukulo said the doctor also spoke to Empire’s doctors.
Empire wrote in its denial letters to Di Laura that “medical studies do not show that this surgery is safe or that this type of spread will improve your short- or long-term health. We also need an outside doctor.” Opinion received. Our health plan. This doctor treats people with your condition. This doctor agrees that medical studies do not show that this surgery is safe or will improve your short-term or long-term health.”
Empire sent Eyewitness News their clinical guidance stating that a “multi-visceral” transplant, as the one Di Laura is requesting, is contraindicated for patients with metastatic cancer such as Di Laura.
Empire said several external surgeons reviewed Di Laura’s request.
“External reviewers considered several articles in the published, peer-reviewed literature – including at least one written by the treating surgeon – and submitted by the surgeon with this request,” the company said in a statement. Some abstracts were also reviewed.” ,
However, in a statement on Thursday, Empire reversed their decision and said they would now cover the procedure with surgeons at the Cleveland Clinic.
“Along with Mr. Di Laura’s medical team, our clinical team decided to cover Mr. Di Laura’s procedure with surgeons at the Cleveland Clinic. The transplant surgeon has provided additional information to demonstrate this procedure. UK and The only option left may be to improve Mr. Di Laura’s health outcomes. We will continue to support him and his family as we move forward.”
Before the Empire’s reversal, because he had denied Di Laura’s appeal three times, Di Laura’s only recourse was to file an emergency appeal with the New York State Department of Financial Services. Di Laura presented it this week.
“Who are these people who are going to review my husband’s life now?” Kukulo said.
Di Laura said that he is in stomach ache 24/7. She has to get her nutrition partly through a tube and a tube comes out of her stomach that carries out the fluid that builds up continuously throughout the day due to illness.
Cuculo said he was told by the Cleveland Clinic that it would cost between $500,000 and $1 million if he wanted to do the surgery out of his own pocket.
The family has started a GoFundMe campaign To raise funds for that potential cost and Di Laura may have to undergo another treatment.
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