Gillen Washington, a student at Northern Arizona University, had been getting medication for an immunodeficiency disease since 2011. But when he went to his clinic in November 2014 for the monthly dose, a nurse told him his insurance company had denied it.
Soon after, the plan sent him a letter saying his bloodwork was outdated and didn’t show that the treatment was medically necessary, Washington’s attorney said.
Over the next few months, as Washington appealed the insurance company’s decision, he developed a cough that wouldn’t go away. He moved home to Huntington Beach, Calif., and ended up in the hospital with pneumonia and a collapsed lung.
“It was terrifying,” said Washington, 22. “I have never felt so depressed and so scared in my entire life.”
In 2015, Washington filed a breach of contract lawsuit in Orange County Superior Court against his insurer, Aetna, arguing that the company had improperly denied him the medication. The case is set for trial this month.
From 35,000 to 50,000 people in the U.S. are estimated to be dependent on medications to treat primary immunodeficiency diseases — about 300 rare conditions in which the immune system doesn’t function properly, or at all. The medication, known as immunoglobulin replacement therapy, replaces antibodies that the body doesn’t make. It can cost tens of thousands of dollars each year.
In recent years, patients with these diseases have faced increasing difficulty getting their insurers to approve treatments, according to clinicians and patient advocates. In some cases, insurers interrupt treatments that are already underway. In others, they deny it at the outset. Without medication, patients can get infections or even suffer organ failure.
Aetna, one of the nation’s largest insurers, with a 2016 net income of $2.3 billion, declined to answer questions about Washington’s case, citing the pending litigation. In court documents, attorneys representing the company argued that it didn’t breach its contract with Washington.
In 2014, Aetna denied coverage of the medication that Gillen Washington was taking for an immunodeficiency disease. He was later hospitalized with pneumonia and a collapsed lung. (Courtesy of Gillen Washington)
Dr. Rebecca Buckley, a professor of immunology and pediatrics at Duke University Medical Center, said insurance companies often require patients with immunodeficiency diseases to stop taking their medication and undergo new lab work to demonstrate they still need it. That interruption is a “serious problem” for people with a definitive diagnosis, she said, because the consequences can be so devastating.
“If you stop the treatment, they are going to get sick,” Buckley said. “There are no spontaneous recoveries from any of these genetic defects.”
Buckley acknowledged that some people are put on the medication unnecessarily. But those who definitely have the diseases can’t make antibodies on their own and have no protection without treatment.
The Immune Deficiency Foundation, a national patient advocacy organization, regularly advises patients who receive insurance denials. President and founder Marcia Boyle said the foundation is getting a growing number of calls each year from patients who face treatment delays because of insurance company decisions. Insurers are also more frequently shifting costs to patients by requiring higher copays and coinsurance or using restrictive formularies, she said.
“Some insurers are creating unnecessary roadblocks because of the costly therapy,” she said. “More often than not, when you have someone with a lifelong, preexisting condition that needs very good medical care and expensive therapy, you are going to have issues with access to care and insurance.”