THIS TIME ON CODE WACK!
Imagine learning that your baby girl has a brain tumor that’s causing seizures and disrupting her development, and your health insurance company is denying coverage for treatment her pediatric oncologist says she needs to survive and thrive? What would you do? Where did one mother turn when repeated health insurance denials delayed time-sensitive treatment to shrink her baby’s tumor?
To find out, we spoke to Dr. Eunice Stallman, a psychiatrist in Idaho and clinical faculty at the University of Washington School of Medicine and the University of Washington Boise Psychiatry Residency Program. Her daughter Zoey is two years old now and still undergoing medical treatment. This is the first episode in a two-part series.
SHOW NOTES
WE DISCUSS
Tell us about your baby daughter, Zoey, and how you came to learn about her health condition?
“… it was maybe around six months or seven months that we noticed she wasn’t quite meeting certain developmental milestones. She had a hard time rolling herself over. She had a hard time kind of sitting up unsupported. And then we started noticing that she was having these right arm twitches and they were happening more and more.
“… Her right hand seemed to be much weaker and it got to a point where she wasn’t really opening her right hand at all. She wasn’t grabbing things and it was just kind of, her arm was just kind of pinned to the side. And so that’s when we really felt and knew, ‘okay, something’s not quite right.’
“… we had an EEG done, which is where they place electrodes on her brain to make sure there’s no seizures. And we got a call saying that it’s abnormal and that from her left side of the brain there was seizure activity and then everything moved very fast from there. We had an urgent MRI scheduled for the next week. Then that was where her tumor was found.” – Eunice Stallman, MD
What therapy was indicated for Zoey based on genetic and molecular testing of her biopsy?
“… it took maybe a week or so for some of the pathology results to come back. They sent [the biopsy] to UCSF to have more experts take a look at it. And then they also sent a section over to Nationwide Children’s in Columbus, Ohio…”
“Everyone agreed that Lorlatinib [was] the best medication for her. So then our doctor put in the request … put in the prior authorization.
“We thought it would be a pretty clear cut case of ‘here’s a mutation, here’s a medication that has been shown to work, and it minimizes the side effects of going in …. inpatient once a month for a week (at least) to do IV chemo,’ which is much more devastating. So then we hear back from the insurance, they came back saying, ‘it’s not medically necessary and it doesn’t meet our criteria, so therefore we’re going to deny it.’” – Eunice Stallman, MD
After repeated denials, what did you do to finally get Zoey the treatment she needed?
“… by the time we had the second or third denial, I was desperate … I’m in this group of physician moms. It’s called Physician Moms Group, and it’s on Facebook and so I in a moment of desperation posted about what’s going on, and I asked for help about ‘how do we get through to insurance to get this approved.’ And I got hundreds and hundreds of responses from people who kind of pointed me to what to do.
“…there were a few physician moms who had connections to the press. They connected me to a few reporters from, you know, Medscape, from ProPublica … and they called on our behalf saying that they’re looking into this, they’re planning on writing an article.
“… So that was one part of it. … We had a few physician moms who worked at St. Jude who said, ‘we have this medication, St. Jude doesn’t need to use insurance. Do you want to come over here for treatment?’
“… then the other things that were recommended and that we did was contacting our Office of Group Insurance, the people who help with Blue Cross for all the state employees and so there’s a group there. They contacted Blue Cross. We contacted <laugh> the attorney general’s office at the recommendation of the Physician Mom’s Group. We contacted the governor’s office, we contacted the Office of Insurance, the Department of Insurance for Idaho.
“… it was a combination, I think, of all of those things. And it took great effort but I think it was a combination of all of those…I have a feeling ultimately press involvement was what pushed them into getting everyone together and overturning the denial… — Eunice Stallman, MD
Helpful Links
Researchers Show Lorlatinib is Safe, Effective for Patients with High-Risk Neuroblastoma, Children’s Hospital of Philadelphia
If Your Health Insurance Claim Is Denied, American Cancer Society
When Your Insurance Company Says No, Triage Cancer
How Often Do Health Insurers Say No to Patients? No One Knows., Propublica
Unforeseen Health Care Bills and Coverage Denials by Health Insurers in the U.S., The Commonwealth Fund
Analysis: Health insurance claim denials are on the rise, to the detriment of patients, PBS
Episode Transcript
Read the full episode transcript.
Biography: Eunice Stallman, MD
Eunice Stallman, MD is a psychiatrist for the State of Idaho and clinical faculty at the University of Washington School of Medicine and the University of Washington Boise Psychiatry Residency Program.
She also writes narrative medicine essays and poetry on topics she is passionate about, and her pieces have been published in JAMA and KevinMD, among others.
She is a mom of four young kids, and her youngest, Zoey, was diagnosed with an infantile brain tumor and is still undergoing treatment.
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