HEWITT, Texas (KWTX) A Hewitt couple has hit another snag in the effort to win insurance approval for an expensive, but potentially life-saving treatment for their 5-year-old daughter, who has a rare neuromuscular disease.
(Photo by Rissa Shaw)
While the couple’s primary insurer has agreed to pay for most of the cost of the new drug, a secondary carrier is now refusing to pay up front.
Faith Fortenberry, 5, was diagnosed with spinal muscular atrophy or SMA, a rare and sometimes fatal disease that causes muscle wasting and weakness and makes every day a struggle.
There was no treatment and no cure.
But in December, the U.S. Food and Drug Administration approved the first and only treatment for SMA, a drug called Spinraza that will cost about $750,000 for six injections during the first year.
On March 10 the family’s two insurance companies sent the family letters of approval, clearing the way for Faith to receive the treatment, but on March 31 the approval was rescinded.
Then, on April 4, Scott & White Health reversed the denial and agreed to cover the treatment at Cook Children’s Hospital in Fort Worth.
All that remained was to get the OK from the secondary provider, the STAR Kids’ Medicaid Managed Care Program through Blue Cross Blue Shield of Texas, but Faith’s parents say they are “back to square one.”
"One way or the other we will get this drug in my sweet girl, but I should not have been dealing with this approval, denial, approval, denial," said Faith's mother, Leeann Fortenberry.
She says Scott & White is willing to pay 80 percent of the cost of the drug, but says the secondary carrier, which earlier agreed to cover the remaining 20 percent, is now refusing to pay up front and wants the children’s hospital to pay first.
But the hospital told Fortenberry the drug was too expensive to pay for up front because about 30 patients are now receiving the treatment, which adds up to a multi-million dollar bill.
"So what the hospital is requiring, which I'm sure every other hospital, is that insurance pays the pharmacy, the pharmacy ships the drug, we get injections, but our secondary insurance has decided not to do that," she said.
She says the insurance provider’s demand effectively denies her daughter access to the drug.
"You approved us, pay for it, let's move on and let's get our daughter strong again," she said.
Faith’s father, Don, said the family was told earlier the treatment was not a medical necessity.
The family disagrees.
“We need this drug in order to save her,” Leeann Fortenberry said at the time.
"It would improve the quality of life as far as being able to eat on her own and not sleep with the bypass machine and not have to do nebulizers and cough assist," Fortenberry told KWTX in an earlier interview.
Fortenberry said the most dangerous part of SMA is the deterioration of the muscles in the lungs.
"We almost lost her two years ago, she really got ill with a respiratory illness. Children like her die every day because their lungs just can't function,” she said.
She said it could take years for Faith to stand or walk, but she was encouraged by results of other children who participated in the drug's trials.
“If it would improve her so she didn't have to do so much respiratory care that would be a blessing, but if she did become able to stand walk have more independence that would be icing on the cake,” she said.