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Ames woman denied coverage for $16K prescription, insurance says it's because bloodwork wasn't done during pandemic

Sara Willette feels her insurance company is forcing her to choose between getting exposed to COVID, which could kill her, or going without a lifesaving therapy.

AMES, Iowa — An Ames woman is fighting to get a lifesaving medication after insurance told her pharmacy they weren't going to cover it anymore.

The medicine costs more than $10,000 a month, a price Sara Willette said she can't afford to pay.

"It's saddening, it's frustrating and it's completely unnecessary,” Willette said. “It's a novel virus pandemic out there. We shouldn't be sending high-risk people in when it's not safe yet."

Willette’s health insurance provider, Wellmark, said one month's worth of her medication costs about $16,000.

"No person, middle class or lower class, has $16,000 just sitting around," Willette told Local 5.

Willette has common variable immunodeficiency (CVID). Her body doesn't make the antibodies it needs to protect her from getting sick.

"My immune system does not react,” she said. “It doesn't notice infection until way too late and then I have an active infection."

Willette has had this immunodeficiency her whole life.

So far, the only treatment that has worked is antibody replacement therapy, which she infuses subcutaneously into her body once a week.

"Before I got on IgG, I was actively dying,” Willette said. “This was back in 2015. My skin was grey, my lips were blue, I was sleeping 18-23 hours a day."

Willette got a call from her pharmacy Friday saying her insurance company wouldn’t cover the IgG replacement therapy anymore.

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Willette said she was told insurance denied it because she hasn't seen her doctor in person in the last year and doesn't have updated lab work.

"Having my medication taken away during a pandemic, in which it's not safe for me to go into a clinical setting, it's a lot of hoops to jump through to try to get everything back to where it goes,” Willette said.

Willette has enough plasma left to cover two more treatments.

Normally, Willette does her infusions every Monday, but she's starting to ration the plasma in case insurance won't cover it until after her in-person doctor’s appointment.

That is scheduled for the end of May after Willette is fully vaccinated.

Local 5 reached out to Wellmark for more information on Willette’s case.

They provided the following information.

“Wellmark wants our members to receive the care they need,” a Wellmark spokesperson said in an emailed statement Monday. “In this instance, we require the blood test to make sure the appropriate dose of the medication is being provided. A member of our care management team can help coordinate with the member the safest way possible to receive the blood test.”

When Local 5’s Rachel Droze called Willette to tell her this Friday evening, she said no one from Wellmark told her this information.

In fact, Willette called Wellmark Monday morning to ask about the denial and was told by a customer service representative they didn’t have a record of the denial, despite Willette’s pharmacy telling her Friday Wellmark denied the prescription.

The pharmacy has filed an appeal to try to get the denial reversed.

Willette also said she plans to reach out to Wellmark Tuesday to ask if they’ll cover a home health nurse coming to her house for the blood draw.

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