"I'm just scared!"
Mary Barnes and her husband, Tom, love putting puzzles together.
"We enjoy it," she said while working on her latest puzzle. "They're tough too," she said.
But recently, Barnes has had to face a puzzle of a lifetime, she just can't piece together.
WATCH THE FULL REPORT FROM KATIE LAGRONE BELOW:
"It's just the anxiety of not knowing if it's spreading or not. It’s hard, I'm just scared," she said through tears.
In February, Barnes was diagnosed with triple-negative breast cancer, considered an aggressive form of breast cancer that can grow and spread more quickly.
"Everybody was telling me that you'll be OK, you'll get through it, you're strong, you'll be OK, so that's the attitude that I had. I'll get through it, but then you get refused, refused and refused and I started thinking, am I going to get through it?"
WATCH BELOW: Mary Barnes talks about her insurance denials
"I don't know if it's spread"
It's been five months since her initial diagnosis and two and a half months since her double mastectomy. Still, Barnes has yet to undergo the necessary chemotherapy and radiation to help rid her body of this cancer.
"I don't know if it’s spread. It's scary, I got to say it's scary," she said.
Her insurance company, United Healthcare, is denying coverage for the treatments her oncologist is recommending.
That treatment includes a combination of known chemotherapy drugs, Docetaxel and Cyclophosphamide, along with Pembrolizumab or Keytruda, an immunotherapy drug.
According to her initial denial letter, her doctor-prescribed treatment doesn't meet United Healthcare policy because "the regimen does not meet national cancer guidelines."
Her appeal a few weeks later was also denied.
At the time, her insurer stated, "There is not enough evidence found in the medical literature to show that this specific treatment improves outcomes for patients with your specific condition."
In addition, United Healthcare stated, "Your health plan only covers treatments that are considered medically necessary for your care."
As a result, her denial was upheld.
"It makes me mad because the insurance we've been paying into it for almost 20 years now, they have no problem taking it out of your paycheck," she said. "I've had no problem with them up until now."
What national guidelines show
Even more puzzling, according to the National Comprehensive Cancer Network, which sets cancer treatment guidelines, Barnes' recommended chemotherapy treatment is considered standard treatment for her type of cancer.
And while her case for the immunotherapy treatment, Keytruda, doesn't meet current treatment guidelines, clinical trials have shown promising results in patients with triple-negative breast cancer, according to the New England Journal of Medicine.
For months, Investigative Reporter Katie LaGrone has been sharing the stories of patients diagnosed with cancer but denied coverage for treatments recommended by their doctors.
Mary’s story of denial and her halted cancer treatment was recently posted to social media by Dr. Alica Billington, a plastic and breast reconstruction surgeon who has taken her frustrations with patient denials to social media.
Billington called out United Healthcare over what she described as unacceptable patient denials.
"United, you need to do better! This patient has had two denials with you. Take care of our patients," Billington said on social media.
Billington and other members of the American Society of Plastic Surgeons recently traveled to Washington, D.C., to garner support for new legislation that would update the Women's Health and Cancer Rights Act, which provides protection for women recovering from breast cancer. Republican U.S. Rep. Kat Cammack, of Alachua County, has signed on to sponsor the bill in the US House of Representatives.
"I just hope that it’s not too late!"
We also reached out to United Healthcare and learned they've had a change of heart.
On the same day we contacted them for answers, United Healthcare sent Barnes and her doctor a letter approving the chemotherapy she needs, now calling it "medically necessary."
Though the insurer still denies the immunotherapy treatment recommended by her oncologist. According to a company spokesperson, “its use in these circumstances is not supported by the National Comprehensive Cancer Network’s guidelines.”
Despite repeated requests, a spokesperson for United Healthcare wouldn’t explain why it denied Mary’s chemo in the first place. According to its spokesperson, United Healthcare has 98% approval rate for claims and said only half a percent of denials occur when treatment does not meet widely accepted standards.
"It's a relief, but why the hell do you have to go through this to get them to do what they're supposed to do to begin with," Barnes asked.
For Barnes, who already beat ovarian cancer, her latest cancer battle continues to be a puzzle and, she believes, her insurance company holds the missing pieces to solve.
"I just hope that it's not too late, that it's not spread because they put it off," she said. "They should have just done it from the beginning; they should have just done it from the beginning."
Have you been diagnosed with cancer but denied treatment coverage by your health insurance company? Contact Katie below.
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