An Arkansas woman elects to spend tens of thousands of dollars for a surgery after her insurance company refuses to pay for it.
Tonight we take a look at a situation that has been frustrating for both doctor and patient.
If Sunni Ackley would agree to endure another open heart surgery her insurance company would pay for it.
Medical research has created a cheaper, less invasive option that is now available in Arkansas.
But Sunni's insurance company says it isn't an option for her.
Two weeks after surgery, Ackley is already feeling like her old self.
"That next day when I got home I could automatically feel a difference in my body," says Ackley. "I told my Mom it felt like my skin was crawling because I had all this energy that I hadn't had in so long."
Sunni was born with a defective heart. She had her first heart surgery shortly after birth.
Her second was at age 12. And her new pulmonary valve...taken from a cow...performed well for over a decade.
But several years ago she noticed a drop in energy. Last year she wasn't able to play softball for the first time since pre-school.
Another surgery was going to be necessary.
"These artificial valves just aren't meant to last forever," says Dr. Michael Angtuaco with Arkansas Children's Hospital. "And so Sunni had reached a point where her pulmonary valve that was in place had...was no longer functional for her."
"I've already had two open heart surgeries so there was a lot of risk going back in and cutting me back open because of all the scar tissue and just the risk of open heart surgery," says Ackley. "I mean...it's a big procedure."
Six months ago Arkansas Children's Hospital performed a new procedure on a heart patient called a Melody Valve Replacement.
"So this is what we're talking about," explains Dr. Angtuaco pointing to a demonstration video. "This is a Melody Valve here. It's a cow valve. It's mounted inside of a stent...this little wire mesh cage here."
The device enters through an artery in the leg and is guided by cameras up to the patient's heart. This is video from Sunni's surgery. Dr. Angtuaco uses video monitors to get the Melody Valve in place before it is inflated and the catheter is removed.
"Most patients I think would choose to go the less invasive route," says Dr. Angtuaco. "Even if it would cost them more. But with it costing actually less, and being less invasive, I think there's a clear advantage to this approach for the patients who qualify for it."
According to Sunni's insurance company, she doesn't qualify for it. Or at least United Healthcare wasn't willing to pay for it.
One of several denial letters states that "There is not enough medical evidence that this valve replacement device is helpful to improve your valve disorder. So, this valve replacement device is not proven to help your condition."
"It's easy to say that this is an experimental thing," says Dr. Angtuaco. "This is not experimental. This is an approved device. This is an approved use for it by the FDA."
Dr. Angtuaco says he has performed the surgery eight times and Sunni's is the only case where insurance did not cover the procedure.
"It's been a frustrating process I think for all of us," says Dr. Angtuaco. "Because we would have liked to have had this approved for Sunni so that she wouldn't have to go through the process of fund raising and paying for this out of pocket."
"It's frustrating when you pay in each month...I pay my premiums, I pay my deductibles...and then I can't use my insurance," says Ackley. "I just don't think that is fair."
Sunni and her family had to put $12,000.00 down and are now working to raise the rest of the $69,000.00 her surgery cost.
Late Monday afternoon we did receive a written statement from United Healthcare after Sunni signed a waiver allowing the company to discuss her case. Here is what is says:
STATEMENT FROM UHC:
"United Healthcare wishes Ms. Ackley well as she continues to recover. We administer the member's benefit plan according to her employer's plan design and evidence-based medicine, which excludes experimental or unproven services. The Melody transcatheter pulmonary heart valve has such a designation because there is only limited published evidence of safety and long-term effectiveness."
"Ms. Ackley's plan is self-funded and United Healthcare as administrator must administer the benefits per the employer's plan design.
United Healthcare enrollees ave a right to appeal when they disagree with a benefit conclusion. In certain cases, such as Ms. Ackley's case, members may also access external review with independent subject matter experts when their internal appeals with United Healthcare are exhausted.
United Healthcare will be pleased to assist with further appeals if we are requested to do so."
Sunni says she and seven other Arkansas patients are living proof that the procedure works. She hopes other heart patients in the future will be covered.