CENTRAL ILLINOIS (WCIA) — A go-to transplant center in St. Louis may be added to the list of facilities and doctors that won’t accept the new state-sponsored Aetna health plan for retired state workers in January.

WCIA 3 has learned of at least a few retirees in need of the time-sensitive, life-saving procedure who were told by Barnes-Jewish Hospital Transplant Center that the facility does not have a contract with Aetna that would make it possible to accept the insurance for the procedure itself and follow-up care.

A representative for the Illinois Department of Central Management Services (CMS) — the agency that administers retiree benefits — said “it’s [their] understanding” that Aetna and Barnes are in agreement about “working together through these cases.”

Within a couple of hours of publication, continued care appeared to have been worked out for at least one patient. Still, roughly a “couple of hundred” people are on a list of impacted patients provided to Aetna by United HealthCare, according to an Aetna spokesperson. While a solution is possible, the ‘if’ and ‘when’ remain unknown.

Tenna Knox settled into retirement in Mahomet after a decades-long career at the University of Illinois. Her hopes of a relaxing retirement dwindled with the stress of needing a new kidney as soon as possible.

“A friend of mine is donating hers,” Knox shared. “And through the miracle of God, she is a perfect match.”

Nearly a year of testing and preparation for the transplant began at Barnes in February. Nine months later, she learned the surgery and follow-up care — roughly a half-a-million dollar expense on average — won’t be covered once she’s moved to the Aetna plan.

“I’m already stressed enough over the fact that I’m trying to stay healthy enough to get my transplant,” Knox said.

Neither Barnes nor Aetna would comment on if the companies have ever had a contract, or are open to (or in) negotiations.

Federal law does require ‘continuity of care,’ meaning patients on group health plans, like Knox, with serious conditions are supposed to continue to be covered for three months after they lose in-network access.

CMS on Monday verbally granted Knox that federal protection after weeks of phone calls, as documented in a journal she keeps close. The added 90 days means Knox can schedule her surgery at Barnes in February.

Bill Alagna, another affected patient miles away in Seymour, said his calls still have not been returned.

“CMS and Aetna, neither one will return my calls,” he added.

Alagna has been with Barnes for eight years, which is also how long he’s been on the liver transplant list. At this point, he needs a liver and a kidney.

“If they don’t pay for transplants, it’s pretty much a death sentence for me,” he said at an interview at his home Friday.

Both transplanted organs should come from a single donor, and both surgeries are to be done at the same time, to increase the success rate, Alagna shared. That means a lot has to line up.

“Because the organs come available, doesn’t mean they’re usable,” he explained.

Alagna has been called in twice for the time-sensitive surgery and so far, the stars have not aligned.

It’s an “emotional rollercoaster,” he described.

“To get up in the middle of the night, drive a high speed all the way to St. Louis to get checked-in, tests all night and pre-op, to minutes away from surgery to find out that — the lead surgeon comes out and says it’s not going to happen today.”

And without a set surgery date like Knox has, three months of continuity of care may not be long enough to guarantee his insurer covers his transplant at Barnes.

Rick Frommeyer, Aetna’s vice president of group retiree solutions said Wednesday that the company will work with Barnes on a case-by-case basis.

“It’s certainly something that we’re absolutely well aware of,” he said, calling a non-contract solution between Barnes and Aetna an “exceptionally high priority.”

Frommeyer said those discussions cannot begin until at least mid-December when state retiree enrollment is complete.

“It’s more of a regulatory issue in terms of they’re not our member,” he said. “We have no right to intervene at this point.”

An Aetna spokesperson on Monday encouraged members to get transplant care at one of its contracted hospitals. In Illinois, there are five, all of which are in Chicago or the surrounding suburbs.

Staying in the city would significantly increase expenses, Knox said. She was already beginning the testing and preparation process at Ascension St. Vincent Hospital in Indianapolis before she got the continuity of care call Monday.

Each facility does its own testing, she explained, meaning it would’ve set the procedure back four to five months, which is a big consideration for someone in the final stage of renal failure.

“I don’t know. I haven’t tried,” Alagna said when asked what switching facilities might mean for him.

“I just turned 70 years old, and some transplant facilities won’t transplant after age 70. But Barnes doesn’t have an upper age limit, so I’ve stuck with them,” he explained.

“The only other option I have would be to withdraw from the state of Illinois program completely,” Alagna continued. “But I’m not sure anybody would want to sell you insurance on the open market if they knew they were going to be obligated to a huge payout right away.”

Continuity of care is not automatic. Patients have to contact their insurance company. For retirees, that would mean going through the upcoming insurer, Aetna.

Alagna plans to testify in front of state lawmakers Tuesday morning about the new and only health plan option for retirees. CMS is first on the agenda for the Commission on Government Forecasting and Accountability. Representatives with Aetna and United HealthCare were added to the schedule in the last week, as were members of the state employees union, AFSCME, and other groups that advocate on behalf of retirees.