Bronx father dying of rare disease approved for potential life-saving surgery
BRONX, New York (WABC) -- A father of two from the Bronx, who was denied several times for surgery on a rare disease, has now been approved for the potentially life-saving procedure in a reversal from his insurance company.
Anthony Di Laura, 35, of Throggs Neck, has a rare disease called Pseudomyxoma Peritonei, which is attacking his abdominal organs.
He was diagnosed in August 2020, just a few months after finding out that he and his wife, Jackie Cucullo, were going 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 he began seven months of chemotherapy. Around the same time, Cucullo became pregnant with the couple's second child. Neither the surgeries nor the chemotherapy was successful in combating the disease and cancer.
"This cancer has caused me to diminish who I am and my being," a frail, pale Di Laura told Eyewitness News 7 On Your Side Investigates Reporter Kristin Thorne. "And I'm fighting it every day to not let it take control of that."
Doctors recently told Di Laura his best option may be hospice.
Cucullo heard about a doctor at the Cleveland Clinic in Ohio who had recently performed the country's first multi-organ transplant on a Minnesota man dying from the same disease. The procedure involved removing the man's diseased abdominal organs and replacing them with healthy ones.
Di Laura traveled 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 would remove his stomach, large intestine, small intestine, and spleen and replace them with healthy organs.
On April 21, while still in Ohio, the clinic informed Di Laura he had been approved for the surgery.
"It was the biggest sigh of relief," he said.
Shortly thereafter, Di Laura's insurance, Empire BlueCross BlueShield, denied the procedure citing it as "investigational."
"Everything in life could be considered investigational," Cucullo said. "How do we make headway in the medical field? This has to happen."
Di Laura appealed the decision. It was denied again and two more times after that, despite the fact that the surgeon at Cleveland Clinic wrote to Empire to express his belief that the surgery was medically necessary to save Di Laura's life. Cucullo said the doctor also spoke with doctors at Empire.
Empire wrote in their denial letters to Di Laura that "medical studies do not show that this surgery is safe or will improve your short or long-term health if there has been this type of spread. We also got an opinion from a doctor outside of 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 or long-term health."
Empire sent to Eyewitness News their clinical guidance which states that a "multi-visceral" transplant, like the one Di Laura is requesting, is contraindicated for patients with metastatic cancer, like Di Laura.
Empire said multiple external surgeons reviewed Di Laura's request.
"The external reviewers considered several articles in the published, peer-reviewed literature - including at least one article authored by the treating surgeon - and also reviewed a couple of abstracts submitted by the surgeon with this request," the company said in a statement.
However, in a statement on Thursday, Empire reversed their decision and said that they would now cover the procedure with the surgeon at the Cleveland Clinic.
"Together with Mr. Di Laura's medical team, our clinical team made the decision to cover Mr. Di Laura's procedure with the surgeon at the Cleveland Clinic. The transplant surgeon provided additional information to demonstrate this procedure has shown early promise in case reports from the UK and could be the only option left that may improve health outcomes for Mr. Di Laura. We will continue to support him and his family as we move forward."
Before Empire's reversal, because they had denied Di Laura's appeal three times, the only recourse Di Laura had was to file an emergency appeal with the New York State Department of Financial Services.
"Who are these people that are going to be reviewing now my husband's life?" Cucullo said of that prospect.
Di Laura said he is in abdominal pain 24/7. He has to get his nutrition partially through a tube and he has a tube coming out of his abdomen to drain the fluid that continually builds up throughout the day because of the disease.
Cucullo said she was told by Cleveland Clinic if they were to perform the surgery out-of-pocket it would cost anywhere between $500,000 and $1 million.
The family has started a GoFundMe campaign to raise money for Di Laura's treatment.
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