Jeff Barrett: fighting for the care he needs
If anything, 35+ years of living with a chronic illness has given Jeff Barrett a sense of perspective.
The Hollywood, Florida, resident was diagnosed in 1990 with polycythemia vera, a rare blood cancer where the bone marrow produces too many red and white blood cells. He noticed shortness of breath during everyday tasks like yard work—and recognized it as the same condition that had plagued his grandfather, too.
Back then, the standard treatment for polycythemia vera was to draw blood twice a month. “It was very primitive for a long time,” Jeff said.
Chemotherapy options appeared later on. These medications kept his blood cell levels within a reasonable range but came with serious side effects such as nerve damage in his feet (called peripheral neuropathy), which makes walking a challenge.
Over time, Jeff’s polycythemia vera progressed into myelofibrosis, a form of chronic leukemia in which scar tissue develops in the bone marrow. Every time a new drug comes along, he is first in line to try it.
However, Jeff has encountered numerous roadblocks trying to keep up with these medical advances. His Medicare clinic has tried to limit him to a small network of preferred healthcare providers who aren’t necessarily familiar with polycythemia vera or myelofibrosis.
I lose months of care fighting for authorizations to access providers in my Medicare network. They need to make quicker decisions.”
Jeff Barrett
“You can go to a nicely qualified oncologist, but they’re generalists. They don’t know the disease… because they deal with all of them,” said Jeff.
Every specialist visit requires prior authorization from his insurance company, even if the providers are in-network. For example, Jeff once needed a bone marrow biopsy and requested to go to one of the two regional cancer facilities that specialize in the procedure. Approval took months.
Jeff was up for the challenge, drawing upon his long career as a workers’ compensation medical case manager, vocational advocate, and professional mediator. But why should he have to battle for proper care in the first place?
“I lose months of care fighting for authorizations to access providers in my Medicare network. They need to make quicker decisions,” the 77-year-old said.
It’s a similar story with Jeff’s specialty medications, which are limited to a 30-day supply. At times he has come all too close to running out before his next prescription refill, a situation known as medication insecurity.
“When your life depends on a medication, that’s scary,” Jeff said. “We need to know we have another bottle we can reach for. They should allow you to have two to three weeks of medication in the bank.”
Thankfully, Jeff can reach for his medication with help from the PAN Foundation. Without his copay grant, his out-of-pocket cost would be between $800 and $1,300 each month depending on the dosage. “I can’t really afford that,” said Jeff, who still works part-time as a human services consultant. That income makes it possible for him and his wife Maureen to maintain their home and travel to see their two grown daughters in New York.
“I would not be in the condition that I’m in if it weren’t for PAN,” he added.
And Jeff’s condition is still quite favorable. He’s pleased with the care he’s receiving, and he’s determined to beat the survival odds for myelofibrosis.
Jeff and Maureen enjoy dining out with friends in their spare evenings, and they’re looking forward to traveling to beautiful Northern California with their daughters in the fall. He also dreams of meeting the “massively talented” actor-singer Billy Porter, after seeing him perform on Broadway.
“I’m much healthier than my [newest] doctor thought I would be,” Jeff said with humor. “I told him, ‘I’m going to be darkening your door for a long time, be prepared.’”
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