CHARLOTTE, N.C. — To a stranger, Pam Ellis still radiates. But behind closed doors, the Charlotte grandmother is exhausted.
Ellis spends most of the day sleeping, has lost a third of her body weight and endured four infusions to treat MALT lymphoma. To add insult to injury, she's faced severe (and unnecessary) stress due to incorrect Centers for Medicare and Medicaid Services and Social Security Administration decisions.
"It was devastating," Ellis, 67, said of her recent experience. "You think you do everything right and then all of a sudden, Pam doesn't have insurance when she needs it most in her life."
Despite her stage 4 cancer diagnosis, the federal government ended Ellis' medical coverage before she could even start treatment. The termination decision came as she was in the midst of disputing an unusually high Medicare bill.
After WCNC Charlotte started asking questions, the agency responsible quickly corrected its mistake, but Ellis' experience points to a gap in federal policy that could put others at risk.
"That was the low point"
Ellis said the government's error, not the cancer itself, has drained her the most.
"That was the low point when they canceled the insurance," Ellis told WCNC Charlotte. "I kind of had given up when they did that."
Her husband of 45 years Dana has noticed his wife's spark dimming.
"I saw the light go out and that hurt," Dana Ellis said as he started to break down. "I see flickers of it sometimes, but not enough."
Just as Pam Ellis was learning she had cancer in 2023, Dana said they received a Medicare bill for more than $3,200. The bill was so excessive that he spent months trying to dispute it.
Dana Ellis said he thought his effort, while dragging on, was still in process. Little did they know, in November, the Social Security Administration quietly terminated Pam's Medicare coverage, because she didn't pay that contested bill.
"You want to talk about a freak-out meltdown," Dana Ellis said. "Oh my God. It was right when we were ramping up for everything and it was a total shock for us."
The couple only learned of the agency's decision in February, three months after the termination went into effect, around the same time she was about to start her first infusion. The revelation led them to delay treatment by several weeks and created new fears of rising medical costs.
Dana quickly reached out to their congressman's office, whose staff started working behind the scenes to help.
A gap in federal policy
"That's just fundamentally unfair," U.S. Rep. Jeff Jackson (NC-14) said of the couple's experience. "I think the core issue that this has exposed is that we really shouldn't put people in a situation where their coverage can be denied while they are disputing a claim, particularly like in cases like Mrs. Ellis, who had stage 4 cancer. There could be life-threatening consequences to that."
Rep. Jackson said he's since learned Congress may need to take action on a broader scale, so other vulnerable Americans don't fall through a similar crack in the federal foundation.
"That we would allow coverage to be denied under those circumstances seems to me to be really inappropriate and something we should address at a policy level," he told WCNC Charlotte. "The first step is going to be identifying exactly where the policy failure was and then, if there is a real gap here and I think there probably is, then we start pulling in other legislators and we say, 'Hey, we think this is fundamentally unfair. Can we work together to fill this gap and address this?' If this is happening in one particular congressional office that means it's probably happening all across the country."
At a minimum, SSA policy says the agency is supposed to give people a heads up about their coverage ending, so they're not blindsided.
"A notice of termination of enrollment for nonpayment of premiums will generally be mailed to the enrollee about 30 days after the end of the grace period," the policy says. "This 30-day period provides time for processing any premium payments received late in the grace period, and avoids incorrect notices that could cause the enrollee needless anxiety."
Pam and Dana Ellis said they never received any prior notice about the planned termination, but did endure needless anxiety. Dana Ellis said, even worse, when he visited the Charlotte SSA office and talked to employees on the phone, they repeatedly dismissed him.
"(They'd say) 'Well, we can't escalate. There's no procedure for us to escalate,'" he recalled. "I was literally desperate."
Crying out for help
Panicked and with medical bills mounting, he reached out to WCNC Charlotte for help. Within a matter of hours of WCNC Charlotte's questions, SSA took action.
"The woman immediately said, 'Mr. Ellis, I'm here to help get this resolved to your satisfaction today,'" Dana Ellis said. "I was so pleased."
The agency quickly restored Pam's medical coverage, apologized and eventually removed the more than $3,200 incorrect charge that started the Medicare mess in the first place, blaming it on "a processing error."
"...our local office has been in communication with the Ellis's. We do apologize for any delays in addressing and responding to their concerns," SSA Regional Communications Director Patti Patterson said. "If someone becomes aware of an issue with their Medicare premiums they should contact SSA immediately and we will take any necessary actions."
Patterson added the Centers for Medicare and Medicaid Services is the agency that makes Medicare termination decisions. A CMS spokesperson, meanwhile, referred WCNC Charlotte to SSA, saying that the agency "would need to explain the reason for any erroneous adjustment to reinstate Medicare coverage after a beneficiary is terminated for nonpayment of premiums due."
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Lessons learned
In addition to reaching out to SSA, people with questions or concerns about their Medicare benefits can call CMS at 1-800-633-4227 for help. Those people can also request the Medicare Beneficiary Ombudsman be alerted about their questions or complaints. In addition, that office welcomes customer feedback, so the agency can "help improve individual experiences."
Dana Ellis intends to share his experience with the ombudsman. While the federal government corrected its most critical failures, his wife continues to receive past-due notices for medical bills Medicare previously rejected. Those bills range in price from $1,000 to $5,000 apiece, Dana Ellis said. He's now consumed by the exhaustive process of dealing with each medical provider's separate billing department to clear up those charges.
Beyond that avenue, people who run into problems with any federal agency can also contact their member of Congress' constituent services division.
"This is what your member of Congress is there to do," Rep. Jackson said. "We can help out."
"I'm making plans"
It shouldn't have taken Rep. Jackson's office or WCNC Charlotte reaching out to SSA to restore Pam Ellis' coverage.
Nonetheless, the resolution of the coverage collapse, coupled with a recent birthday visit from Pam's daughters and grandchildren, has her recharged and once again making plans.
"I see those two little grandkids. I just want to be there a few more years if I can," she said. "I want to see them get older. I want to do our vacation this summer and see my daughter get married in August. I'm sorry. I have to keep positive."
Dana Ellis, meanwhile, said he's finally now able to focus solely on his wife again.
"She's the person that I wish I could be," he said tearing up. "I wish I could be more like her."
Contact Nate Morabito at nmorabito@wcnc.com and follow him on Facebook, X and Instagram.