Misty Selph and her husband sat together, taking in the weight of the moment.
After 15 years together, the couple were contemplating divorce.
Misty and Benji Selph still loved each other. They loved their busy lives working and shuttling their two children between school and baseball games in a small Savannah, Georgia suburb.
The Selph family.
But Misty was very sick. In August 2021, she had been diagnosed with a rare, aggressive form of metastatic thyroid cancer. After a year of surgeries, radiation, scans, and appointments with oncologists in her area, she learned her condition — papillary thyroid cancer with poor differentiation — required highly specialized care that her current open-access HMO plan did not cover.
By September 2022, she had already racked up $20,000 in medical bills through her Blue Cross Blue Shield HMO plan.
The complex surgical care she needed from a specialist at MD Anderson would cost well over $100,000. And with her current health plan, she'd likely be on the hook for all of it.
To have any chance of affording future care, she needed new health coverage. Fast.
Typically, Americans can only change health plans in the new year, but there are a few exceptions — divorce is one of them. Selph was on her husband's health plan, which he received through his work.
"If we get divorced, I can immediately get new insurance," Selph recalled saying.
Staying married meant waiting an additional 4 months to change plans, which would be a gamble — she didn't know how much more her cancer would spread in that time.
Ultimately, the couple decided to take the risk and wait. They just couldn't get behind a divorce in the name of health insurance.
Selph is one of millions of Americans with inadequate health coverage. Survey data from the Commonwealth Fund indicate that in the first half of 2020, nearly 44% of adults in the US were inadequately insured, either uninsured or underinsured. And like Selph, 1 in 4 adults who were enrolled in employer plans — about 30.5 million Americans — were considered underinsured because their out-of-pocket costs or deductibles were high, anywhere from 5% to 10% of their household income, excluding premiums.
"Access to health insurance alone doesn't mean you'll be able to afford your medical care," said Zachary Baron, JD, associate director of the Health Policy and the Law Initiative at the O'Neill Institute at the Georgetown University Law Center, Washington, DC. "Unfortunately, many people with health insurance encounter situations where they have a really expensive treatment or an unexpected medical circumstance and are hit with a bill that puts them in severe financial distress."
The Fight for Coverage
In September 2021, Selph underwent her first surgery.
She saw a local general surgeon in her plan's network, and her health insurance covered the procedure.
But the thyroid tumor was too close to vital organs in her neck, and her surgeon could not safely remove it all. She received radioiodine therapy from another local physician to shrink the remaining tumor in her thyroid.
By April 2022, a scan showed that the radioiodine therapy had not worked. Selph's cancer had spread outside her thyroid, and she would need another surgery.
Selph's endocrinologist told her the cancer required specialty care and referred her to an expert at the Mayo Clinic in Jacksonville, Florida.
This is when her insurance troubles began. The Mayo Clinic and the surgeon were out of network.
"After 4 weeks of fighting with Blue Cross and endless hours on the phone, they denied the referral," Selph recalled. Her husband's employer even hired a third-party company to work on her case, but it didn't help.
Medscape reached out to Blue Cross several times over the past month, but the insurer didn't respond to questions about issues regarding limited insurance plans that may leave patients in severe financial distress.
While her HMO plan through Blue Cross Blue Shield had been fine for routine doctors' appointments over the years and even for her initial cancer care needs, it was much too limited to handle her complex condition. The plan essentially covered no out-of-network care and had no cap on out-of-network spending other than for services deemed "emergency" care. In addition, the coverage network spanned only a small radius around her home near Savannah and did not include any comprehensive cancer centers, not even the Winship Cancer Institute in nearby Atlanta.
Selph returned to her local doctor to ask for another referral. He suggested a head and neck surgeon at Emory Clinic in Atlanta who was covered under her HMO plan.
After a second surgery in July, Selph received similar news. Her surgeon said that, given the tumor's proximity to other vital areas, it was too risky to remove completely.
There was other news: in the 9 months since her first surgery, the cancer had spread to her trachea and vocal cords.
"At this point, it was very clear that my cancer was beyond local cancer expertise," she said.
A tumor board reviewed her case and provided next steps for her treatment. The panel of doctors agreed: Mark Zafereo, MD, FACS, section chief of head and neck endocrine surgery at MD Anderson, was the leading expert on Selph's type of thyroid cancer.
Selph received referrals to see Zafereo from several doctors. However, each was denied by Blue Cross Blue Shield. As a physician based in Texas, Zafereo was out of network, and her plan didn't cover out-of-network care.
Her insurer provided a list of local in-network doctors she could see instead, but she knew she had already exhausted those options over the previous year.
There was another hitch. The deposit to see Zafereo and develop a treatment plan was $13,700.
Between her job as a pre-K teacher, her husband's work as a police officer, and the medical bills she already owed, another $13,700 was more than they could afford.
In a last-ditch effort, Selph contacted her local congressman, Buddy Carter, and state senator Max Burns for help. Carter's and Burns' staff both reached out to Blue Cross Blue Shield on her behalf.
After an extensive back and forth, the insurer approved the referral, but with several caveats: it was for a 20- to 30-minute visit in which Selph could only discuss issues of moderate complexity and excluded tests. Although Selph needed a thorough exam along with numerous scans, this had to be good enough for the moment.
Selph scheduled her appointment with Zafereo for the following month. She booked her flight and made reservations at a hotel near the hospital.
Right before her trip, a friend created a GoFundMe page for Selph to rally the community to help her cover her appointment at MD Anderson. Her son's baseball team also held a fundraiser.
"To see the love from the community was incredible, and to know the community supported my family as well was so important to my husband and kids," Selph said.
On September 2, 2022, Selph flew to Houston with her mother. Her appointments at MD Anderson lasted several days.
During her visit, she got news about the GoFundMe effort: the community had raised enough to cover the deposit for MD Anderson, as well as travel and hotel costs. Selph felt so relieved and thankful. But, given the $100,000-plus cost of her surgical care, she knew she would need new insurance before she could proceed. "No GoFundMe would be able to raise that much," she said.
Being trapped in a bad plan is fairly common, said Stacie Dusetzina, PhD, professor of health policy and the Ingram Professor of Cancer Research at Vanderbilt University School of Medicine, Nashville, Tennessee. "But until you're sick, you might not be thinking about how good or bad your plan is," she said.
It is especially important to understand out-of-pocket caps and whether an insurer's network is adequate. "When dealing with a narrow network, it can be important to note if the plan has in-network and out-of-network maximums. Otherwise, you may end up with an enormous amount of debt," Dusetzina said.
Baron agreed. With an out-of-pocket maximum, people may "get to a $5000 or $10,000 cap quickly, but at least there's a cap," he noted.
Even so, Baron acknowledged, many people don't have a rainy-day fund to handle medical expenses of a few hundred dollars, let alone a few thousand.
Plus, Dusetzina added, when deciding on a health plan, it can be nearly impossible to make a complex, forward-looking decision based on your potential future health.
"What care would I want if I had a stroke or got cancer? Most people aren't thinking about those what ifs," she said.
A New Plan, an Essential Surgery
When open enrollment began in November, Selph immediately changed her health plan. She signed up for a point-of-service (POS) plan through Blue Cross Blue Shield — the only other option she had through her husband's work.
A POS plan represents a hybrid of an HMO and a PPO — as with an HMO, Selph would need to pick an in-network physician as her primary care provider, but like a PPO, out-of-network care was also covered. This plan also delineated an annual out-of-pocket maximum of $3000 for in-network care and $5500 for out-of-network care.
Selph scheduled her next appointment with Zafereo for early January, as soon as her new plan kicked in.
While she waited, Selph continued to teach. "I went to work every day to show my two children that I'm living my life," she said. "I don't want them to see that I ever gave up."
On January 5, Selph flew back to Houston. After reviewing Selph's CT scan, Zafereo saw that the tumor in her neck had grown since he had last seen her in September.
"Selph's disease was significant," he told Medscape. The tumor now pushed on her trachea and encased the nerve to her voice box. It also extended to her upper chest, where it was stuck to a major vein.
Zafereo scheduled Selph's surgery for his next available opening: January 10.
During the 4-hour surgery, Zafereo carefully resected the tumor from these critical structures. Although it is an intricate procedure, this type of surgery was fairly routine for Zafereo, who has built a practice around complex thyroid cancer cases.
When Selph woke up, she found that Zafereo had removed a baseball-sized tumor from her neck without damaging her vocal cord or trachea.
"Misty is now free of disease in her neck," he said.
A few weeks later, the bill arrived.
The cost, including the surgery, hospital stay, and scans, came to almost $143,000. Selph owed $3000 — her in-network maximum.
Still, Selph knows she is not out of the woods. The cancer in her neck could return, and she has small, suspected metastases in her lungs, which will need to be watched over time. She will have to come back to MD Anderson a few times a year for follow-up testing.
"I'm not healed yet. I still have a long recovery and have cancer in my lungs to deal with, but finally am getting the treatment I need," she said.
Selph said she wanted to bring her story to light to help change the conversation regarding health coverage.
"Nobody should get sicker as they wait for insurance to approve necessary care," she said.
This is part of our Gatekeepers of Care series on issues oncologists and people with cancer face navigating health insurance company requirements. Read more about the series here.
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Cite this: Divorce or Wait for Cancer Care? 'Underinsurance' Forces Grave Decisions - Medscape - Mar 20, 2023.