A liver transplant might save him — if he can get the drug he needs to stay alive long enough

“Theoretically, that could cure him,” Palmeri said.

In order to be healthy enough for the transplant, however, Middleton needs to keep his cancer at bay for at six to nine months. A new drug, approved last year by the Food and Drug Administration, is his best bet for doing that.

The drug, Ziihera, targets the specific genetic fingerprint of his cancer, his doctors say.

In June, Palmeri reached out to Middleton’s insurance company, Cigna Healthcare, to get prior authorization for the drug.

Cigna rejected the claim, writing in a denial letter that Middleton needed to try other drugs first.

Palmeri said those drugs are also “grossly inferior.”

“The problem is that if he failed and the cancer came outside of the liver to another body part, then his chance for cure would be off the table,” he said.

Palmeri appealed twice on Middleton’s behalf, only to receive two more denials.

The “request for Ziihera was reviewed carefully by multiple medical directors, including two different board-certified specialists in Hematology and Medical Oncology who are independent from Cigna,” a company spokesperson said in a statement to NBC News. “There are multiple medications covered by Mr. Middleton’s plan that are similar to Ziihera and recommended for his current condition.”

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All of those medications target and bind to a protein on cancer cells called HER2, helping to slow or even stop those cells from multiplying.

Cigna ultimately approved a similar drug, called Enhertu.

But research shows it’s not as effective against cancers like Middleton’s for much longer than six or so months. That’s likely not long enough, Palmeri said, for Middleton to get a liver transplant.

“That’s playing ‘cancer chicken’ in my mind,” Palmeri said. “That’s just not morally right.”

Middleton said he will start his course of Enhertu this week.

“It is definitely heartbreaking that I’m not getting what science says I should get,” he said.

The mortality rate for cholangiocarcinoma is high because the cancer is often diagnosed at later stages, when it’s more difficult to control.

Doctors caught Middleton’s cancer early by chance. In 2023, he had an MRI to determine whether he had Crohn’s disease, an inflammatory bowel disorder. Instead, the imaging showed worrisome spots on his liver.

Middleton started treatment right away: surgery, chemotherapy and radiation. He was cancer-free until this past February, when he had a recurrence. He had a second surgery and another round of chemo.

According to Palmeri, Ziihera should have been the next step.

In a clinical trial from the drugmaker, 62 patients with cholangiocarcinoma got Ziihera. In order to be included in the trial, patients could not have previously taken a HER2 drug for their cancer.

Cigna’s denials, however, said Middleton could only get Ziihera if he had already taken a HER2 drug.

“The problem is that there is no evidence to use Ziihera AFTER prior HER2 therapy,” Palmeri wrote in a text message.

In the trial, over half (52%) of the participants responded to the drug. Among those who did, the effects lasted for a median of 15 months.

“More than 50% is amazing for second-line therapy,” said Dr. Nipun Merchant, chief of the division of surgical oncology at the Sylvester Comprehensive Cancer Center at the University of Miami Health System. “We don’t see that very often.”

Dr. Douglas Rubinson, a senior physician specializing in gastrointestinal cancers at Dana-Farber Cancer Institute in Boston, said that Ziihera “might be the first big game-changer targeting HER2” in cancers of the gastrointestinal tract.

Still, he was careful not to promise that a liver transplant would cure Middleton.

“There have now been a few publications describing efforts looking at liver transplant that are encouraging and now instigating more study,” Rubinson said. “But we’ve not gotten to the point where we can say this is a standard strategy.”

Neither Rubinson or Merchant are involved in Middleton’s care.

The Middletons are a huggy bunch; embraces come easily and often.

Middleton and his wife, Caitlin, live 10 minutes from his brother, James, and his family. Their mother, Linda, is 10 minutes in the other direction, still in the house where she raised her boys in the shadow of North Carolina’s Blue Ridge Mountains.

Whether they mean to or not, Middleton and his identical twin, just shy of their 44th birthdays, still dress alike in ball caps and plaid shirts. The men talk almost daily.