VA Woman Fights Insurer For Autoimmune Disease Treatment

By Consumers For Quality Care, on September 25, 2019

Photo by Heidi de Marco/KHN

Two years ago, Sarah Lillard began the fight of her life. As WUSA 9 reports, Lillard was diagnosed with a rare autoimmune disease that, without treatment, would leave her unable to walk, talk, or take care of her four children. The disease is so crippling that Lillard would wake up every day feeling as if she had been hit by a truck.

“It was a death sentence. I felt like I was losing my life,” she explained.

Lillard and her husband, Bram, have done all they can to get her the care that would allow her to continue raising their four children. Bram made a video of his wife’s struggles and started a petition that has garnered more than 13,000 signatures.

After more than a year and visiting seven different doctors, Lillard learned about IVIG. The therapy is a blood treatment made from thousands of donors. Research on the treatment has shown it to be effective and Lillard says that for her, it has been.

“I wouldn’t be able to have this conversation if I weren’t on this therapy, it’s working for me,” Lillard said.

The therapy, however, comes at a high price. IVIG is $6,000 a treatment, costing the family roughly $12,000 a month. The Lillards say their insurance company, Aetna, has refused to cover the therapy.

Last month, Virginia Congressman Gerry Connolly wrote to Aetna, asking them to reverse their denial. Connolly cited that he did not believe the treatment was experimental and that other major insurance companies like Cigna, have covered the treatment. The congressman says there have been countless studies that shows it works.

The family has drained their savings, spending around $60,000 out-of-pocket on Lillard’s treatments. They say they are willing to go into debt to continue the treatments, but they hope that Aetna will cover the treatment.