“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, Mary has had to face a puzzle of a lifetime, she just can’t piece together.
Watch full report from Katie Lagrone
“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.
Back in February, Mary 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 okay, you'll get through it, you're strong, you'll be okay. 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 Mary Barnes talk about her insurance denials
“I don’t know if it’s spread”
It’s been 5 months since her initial diagnosis and two and a half months since her double mastectomy. Still, Mary 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.
Mary’s 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, Mary’s 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, Mary’s 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,” she explained.
What national guidelines show
Even more puzzling, according to the National Comprehensive Cancer Network, which sets cancer treatment guidelines, Mary’s 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 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 DC 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. Congresswoman Kat Cammack, of Alachua County, FL, 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.
Turns out they’ve had a change of heart-
On the same day we contacted them for answers, United Healthcare sent Mary 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 says 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,” Mary asked.
For Mary, 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,” she said.
Have you been diagnosed with cancer but denied treatment coverage by your health insurance company? Contact Katie below.
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'I’m just scared!' Insurance denials halt chemotherapy treatment for FL woman with 'aggressive' breast cancer
Months have passed since Mary Barnes had a double mastectomy to treat an “aggressive” form of breast cancer. Now her treatments have been put on hold because of insurance denials.