If AnnMarie Rainford had to do it all over again, she'd get everything in writing before going in for a medical procedure.
"I'd make sure I had my back covered," the Portland woman says. "I trusted that, if my insurance provider said I was covered, then I was covered. Now I feel like I have to make sure."
Rainford is not alone.
"The No. 1 question that's asked over and over again regarding medical insurance is not how to find the best insurance plan or provider, but rather 'How do you overturn a denial for treatment?'" says Carla Dionne, founder of the online information site www.uterinefibroids.com.
A Portland native, Dionne has gone through her own battle with uterine fibroids – a disorder that affects Black women two to three times more often than White women; causes problems such as heavy bleeding and anemia; and can lead to infertility.
"Denial for treatments requiring pre-authorization is occurring on a scale that can only be described as phenomenal," Dionne states on her Web site. "Oddly enough, however, hysterectomies are fairly easy to get authorized ... it's the myomectomies and embolizations that seem to be under the tightest scrutiny."
Avoiding a hysterectomy was exactly what was on Rainford's mind when she first heard – at the age of 32 – that she had fibroid tumors growing inside her uterus.
"I was still unsure about my plans for childbearing, so I decided to wait and see what happened," Rainford says.
From 2001 to 2005 "what happened" was relatively normal. Rainford's doctors kept tabs on the tumors and her menstrual cycles didn't seem different. But then, in 2005, Rainford's fibroids had started to impact her health.
Rainford knew she had to do something about the tumors, but could she save her uterus?
It was the same question Stacey Triplett, another young Portland woman, was grappling with. Triplett was 28 years old when her doctors discovered the fibroid tumors growing in her uterus. By 2005, the fibroids had distended her uterus to the size of a 20-week pregnancy.
Although the women didn't know each other, they were connected by a few factors – both were young, childless Black women working high-level jobs in Portland; both had what they believed to be excellent health insurance through Regence BlueCross BlueShield; and both had sought help for their fibroids from Dr. John Kaufman at Oregon Health Sciences University.
The doctor had experience with Uterine Fibroid Embolization, a non-surgical procedure that has gained national attention in recent years for helping women get rid of fibroid tumors without invasive surgery.
Dr. Kaufman recommended embolization for Rainford, stating in her medical records that the procedure was "the safest and most conservative treatment" for her fibroids, which were large enough to make any pregnancy "at very high risk of uterine rupture with disastrous results" according to Kaufman.
Likewise, embolization was recommended as the best treatment for Triplett, who wanted to save her uterus and get rid of her ever-growing fibroids.
'How could this be happening to me?'
Both women underwent successful embolization procedures in June of 2006.
Six months later, Triplett and Rainford received similar letters from Regence, denying payment for the procedure, citing a failure to prove that the procedure was "medically necessary."
Suddenly, Rainford and Triplett shared another trait – both women now owed about $20,000.
Going into their embolizations, Triplett and Rainford had no doubt they were covered by Regence. Both women had checked with their doctor's office and both had called Regence to double and triple check their coverage.
Pre-authorization, both women say they were told, was not necessary for this procedure.
"I was told that the procedure was covered as long as it was medically necessary," Triplett says. "When I asked who decided if the procedure was medically necessary, they said my doctor."
Rainford says she was told the exact same thing.
And yet, months after receiving their embolizations, both women were facing massive health care bills.
"I'm educated, employed and insured," Triplett says. "I just thought, 'How could this be happening to me?'"
OHSU advises potential embolization patients to "discuss your case with your primary health care provider... If they agree that the procedure is right for you, then you can present this fact to your insurance company. If payment is denied, your doctors can help you with an appeal."
A sliver of hope
Rainford and Triplett began the process of appealing the claim to Regence several months ago.
In mid-May, Triplett got her 15 minutes (literally) in front of the Regence appeals board.
After describing her 12-year saga of trying to treat her fibroids conservatively, Triplett counted on her doctors to prove that the embolization procedure was necessary and that conservative treatments had failed to control the fibroids.
When she had finished, a board member from Regence commended Triplett on her presentation.
The praise gave Triplett a sliver of hope – something she hadn't had since her insurance provider refused to pay for the embolization. Still, Triplett had talked to Rainford by this point and knew that Regence had already denied Rainford's appeal.
With only one more appeal left, Rainford went to her human resources manager.
After explaining her battle to get the procedure covered, Rainford left her human resources manager's office feeling a little more hopeful. The manager was sensitive to the issue and, after pouring over the documents Rainford provided, agreed that the procedure should have been covered.
One letter from her human resources manager was all it took. On May 3, Rainford received word that the insurance provider had agreed to cover her procedure.
"I feel $18,000 richer," Rainford wrote in an email to Triplett.
One month later, Triplett got her own good news. Not only was Regence agreeing to pay for her embolization, but the insurance provider would be looking into its policy regarding uterine fibroid embolization procedures.
"We won the appeal," Triplett wrote in a short, but sweet letter to the people she'd updated throughout the year. "Thanks for your help, ideas and support."
The experience has taught both women a valuable lesson.
"In 2005 I felt great about Regence," Rainford says. "I though I was golden because I had such good insurance."
Nowadays, Rainford says, "the rose-colored glasses are gone."
Dionne, the Web site operator, has some advice for people like Rainford and Triplett – people who believe they're covered until the denial letter comes in the mail.
"Document all conversations you have with representatives of your insurance provider," Dionne advises. "...if you are unsuccessful (in overturning a denial) and wish to pursue the matter legally, good documentation of all communication with your insurance provider may be extremely helpful to your case."
To read Dionne's seven-point checklist for appealing an insurance company's denial of treatment for fibroid tumor procedures and to find other resources for uterine fibroid information, visit Dionne's patient advocacy site, www.uterinefibroids.com.