By Consumers For Quality Care, on May 22, 2019
Charlotte Ortiz’s health declined quickly. In January, she was healthy enough to pass a fitness assessment for her job with the National Guard and ice skate with her daughter. But by mid-February she was hospitalized with severe backpain, Columbus Dispatch reports. At the hospital, her health deteriorated even further. First, she suffered paralysis from the waist down. Next, she wasn’t able to swallow. Her ability to smell, speak and see deteriorated, too.
Doctors were having trouble diagnosing what was wrong. Ortiz was transferred from a hospital at Wright-Patterson Air Force Base to Miami Valley Hospital. After a few weeks of testing, Ortiz was diagnosed with Extramedullany Granulocytic Sarcoma, a cancer which attacks nerve endings and is so rare that fewer than 50 people worldwide have known diagnoses. Ortiz’s health was still deteriorating.
Her pharmacologist thought he’d identified a type of drug that would flip off the chemical switch that was driving the uncontrolled cell production. Finding research on the topic from Memorial Sloan Kettering Hospital in New York, the pharmacologist, Josh Cox, sent Charlotte’s case to its author. That doctor agreed that the drug, Mekinist, was appropriate. The MD Anderson Cancer Center in Houston concurred, John Ortiz said.
In mid-March, Ortiz’s oncologist, Mark Romer, wrote a prescription for Mekinist. Although Dr. Romer and top oncologists in the country agreed it was the best treatment for Ortiz, her pharmacy benefit manager (PMB), Express Script, denied the medication, saying her treatment was an “off-label” use.
“After reviewing the information provided, it has been determined that the request cannot be approved,” Express Scripts’ March 29 letter to Romer said.
When Ortiz was first hospitalized, neither she nor her husband, John, worried about their insurance. They were covered under the military’s insurance Tricare.
Her husband, a former military recruiter, said his colleagues use the plan as a selling point to potential recruits: You might not get rich in the service, but you’ll serve your country and you’ll have the best health care available while you do it.
Ortiz could not believe that the medication she so desperately needed would be denied. Since Extramedullany Granulocytic Sarcoma is so rare, there are no FDA-approved drugs to treat it specifically.
“It’s scary when you’re in the hospital and they say ‘denied,’” she said last week from her bed at Miami Valley.
Ortiz’s oncologist appealed the denial. After more than a month of denying the medication, Express Scripts reversed its decision. John credits Sen. Sherrod Brown’s intervention in his wife’s case with the success in a timely reversal.
Ortiz says that she wants to raise awareness for others whose care has been unnecessarily interrupted by PBMs.
“It’s for those people who don’t have the voice or the knowledge to do this,” Charlotte said. “If the doctors and the medical experts are telling you that you need a lifesaving drug, you should get it. (Express Scripts) is an insurance company. They’re not doctors.”