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A 35-year-old father of two who was told by doctors his chances of surviving a rare abdominal cancer were close to zero has had a potentially life-saving organ transplant put on hold for a year because his insurance company refused to cover the cost of the procedure.
New Yorker Anthony Di Laura, 35, was diagnosed with pseudomyxoma peritonei (PMP), a rare type of abdominal cancer, in August 2020 after weeks of abdominal pain.
He underwent multiple surgeries and rounds of chemotherapy, but after they did little to help, doctors told him his chances of survival were close to zero.
Then he learned of a rare organ transplant that could save his life, but his insurance company prevented him from being placed on the waiting list for the surgery.
However, his long battle with Blue Cross Blue Shield (BCBS) ended earlier this year, and Di Laura now hopes he can receive the life-saving multivisceral transplant that will save his life.
Anthony Di Laura (right) was diagnosed with the rare abdominal cancer PMP in August 2020 after experiencing recurring symptoms for weeks. He was convinced by his wife, Jackie Cucullo (left), to seek medical treatment.
Di Laura (right) initially underwent seven months of chemotherapy and two significant operations. The treatment was found to have limited effectiveness
Di Laura's placement on the transplant waiting list was held up for nearly a year as he fought with BCBS to get the surgery approved
Di Laura was told by a doctor to prepare for death after months of treatment did little to help him
Di Laura first had symptoms in the summer of 2020, he said Good morning America.
He reported severe abdominal pain and even felt like his stomach was protruding in some places.
His problems seemed solved when they disappeared for a week, but when they returned, his wife, Jackie Cucullo, convinced him to see a doctor.
In August, Di Laura was diagnosed with PMP at Memorial Sloan Kettering Cancer Center in New York City.
It is a rare cancer that usually forms in a person's appendix WebMD.
About one in a million people will be diagnosed with the disease during their lifetime.
Once a tumor grows out of the area where it originally formed, it begins to produce mucus that fills a person's stomach. This is what Di Laura probably experienced when his stomach began to protrude.
He ended up going through seven months of chemotherapy and had cytoreductive surgery twice - without success.
“It’s the most miserable feeling in the world that no one should ever have to go through,” Di Laura said. "Every day is a struggle. Every day is a challenge."
Cracking the cancer seemed impossible and even the doctors began to lose hope that they could treat it.
However, Di Laura, now a father, persevered. Eventually, he learned of a rare “multivisceral” organ transplant that could be performed on him in Ohio and contacted doctors at the Cleveland Clinic
Now on the waiting list, Di Laura hopes he can find a donor and continue raising his two young children
'My last hospital stay... the doctor on shift came into our room and said, 'What are you going to do?' I looked at him, I said, 'What's my plan? I want to get better.’ He explained: “No one will operate on you in this hospital…The best thing you can do is go to hospice and live a comfortable life until the end.” That's what he said," he explained.
However, he had recently become a father, which gave him an additional reason to want to continue fighting.
Cucullo said the couple struggled to conceive for two years. Finally, just before Di Laura's health began to decline, they finally had a breakthrough.
'[Pregnancy] is extremely rare in itself while someone is undergoing chemotherapy. So we certainly feel blessed for our two children,” Cucullo explained.
Through a support group for PMP sufferers, the couple was introduced to the story of a man who had a similar case to Tony.
They discovered that he had received the first-ever “multi-visceral” organ transplant in the United States at the Cleveland Clinic in Ohio.
In this type of transplant, a new liver, small intestine and other abdominal organs are imported into a patient all at once.
In March 2020, Di Laura contacted doctors in Ohio to get on the waiting list for the rare procedure.
However, his health insurance with BCBS proved to be a hindrance. The company reportedly rejected his request to take over the operation multiple times.
After battling with insurance for a year, Di Laura persevered again and was finally approved to be placed on the waiting list.
"Together with Mr. Di Laura's medical team, our clinical team made the decision to cover Mr. Di Laura's procedure with Cleveland Clinic surgeon," the company told GMA.
"The transplant surgeon provided additional information to demonstrate that this procedure has shown promise in case reports from the United Kingdom and may be the only remaining option that could improve health outcomes for Mr. Di Laura. We will continue to support him and his family as we move forward."
During this time, the family also welcomed a second child in May, with Lila Rae joining her brother JP, in what the couple describes as "miracle babies."
'Always fight. Always keep hope and never give up because someone says it is impossible,” he said.
“I have never taken no for an answer and I will not start now if living with my family will save my life.
"So I want my kids to know to never give up in the face of anything just because someone says no. There will always be a way out. There will always be new ideas or always new inventions. There will always be an answer. You just can't give up and that goes for everything in life."