It’s a club no one wants to be a part of.
Cancer.
But after getting diagnosed with breast cancer, many women are also finding themselves battling their insurance companies for coverage.
“Every day without getting the treatment, I feel like a ticking timebomb”
Rachel Roth-McKnight was diagnosed at the end of July with invasive ductal carcinoma. She has an aggressive form of cancer and has also tested positive for the BRCA gene, which increases her chances of developing other cancers.
But her insurance company has denied coverage for radiation treatments, mesh for her reconstructive surgery, a PET scan and an MRI to see if her cancer has spread.
IN HER WORDS: Rachel Roth-McKnight explains what being denied health insurance coverage has done
Nancy Hutson was diagnosed in September with breast cancer, but her reconstructive surgery wasn’t done for nearly six months because her insurance company denied coverage over the mesh her surgeon uses as part of the surgery.
Though popular among surgeons, it’s still considered experimental so her insurance company wouldn’t pay for it.
It’s a problem that doctors say is becoming increasingly common. Patients diagnosed with breast cancer but denied coverage by their insurance companies for treatments and screening recommended by their physicians.
“You have to laugh about it because it’s crazy!”
Brittany McArthur’s insurance company refused to cover the cost of a mammogram even though she had a large lump in her breast and a referral from her doctor
But at 30-years-old, Brittany, who first shared her story with us one year ago, said her insurance company at the time, told her she was too young for the life-saving test.
“You have to laugh about it because it’s crazy,” she said.
It is unclear how often insurance companies cover the costs of cancer treatments and how often they are denied.
According to a study by the Commonwealth Fund, a non-profit dedicated to promoting health care equity, 17% of Americans reported insurance denials for care recommended by their doctors last year.
And, too often, doctors say, those denials lead to delays in care.
Federal law created to protect breast cancer patients is filled with loopholes
Dennisse Carrion waited more than a year for her reconstructive surgery because halfway into her reconstructive process, she said her surgeon was dropped by her insurance company, making him an out-of-network provider.
“The most frustrating part for me is the fact that this is against the law. This is against federal law. Where does that fit in here,” she asked.
That law, known as the Women’s Health and Cancer Rights Act (WHCRA), is supposed to protect patients who choose breast reconstruction after a mastectomy.
But nearly 30 years after it was passed, advancements in surgeries and treatments have paved the way for insurance company loopholes and denials.
Ashely Fox was forced to pay half of her double mastectomy out of pocket.
“They were only going to cover the cancerous breast; they would not cover the non-cancerous breast mastectomy,” she said.
According to her insurance carrier, the surgery on her non-cancerous breast was considered cosmetic. As a result, Fox spent about $3,000 for a mastectomy on her non-cancerous breast.
“I think for patients, the worst part of their cancer journey is not the cancer, it's the insurance part,” explained Dr. Alicia Billington, a plastic and reconstructive surgeon in St. Petersburg.
Dr. Billington didn’t realize the frequency of insurance denials had become so bad until she started seeing patient after patient getting denied coverage at various parts of their cancer journeys. She believes part of the problem is that no one is enforcing the federal law.
“I think it’s money. I think it’s greed.”
IN HER WORDS: Dr. Billington describe what, she believes, is the motivation for insurance companies to deny breast cancer patients treatments and screenings
Dr. Billington is now fighting for legislation to be added to state and federal laws that would give breast cancer patients more insurance coverage for reconstruction, diagnosis, and treatments.
Most of the women we spoke with are Dr. Billington’s patients, for whom she had to fight insurers to obtain coverage.
IN THEIR WORDS: These patients explain how long they've been fighting for lifesaving health insurance coverage.
“I have this fear going forward that I may have to have some other surgeries. We're just at their mercy, and they can deny anything they want,” said Fox.
When all these women want is to beat their disease without getting beat down by insurance.
If you were diagnosed with cancer, denied insurance coverage, and are willing to talk about your experience, Katie wants to hear from you. Please use the contact form below to share your story.