Medication for Joliet Woman Costs $56K Per Treatment

Photo 1: Tony and her daughter Monica. Photo 2: From left, Tonya’s son Jay, Tonya, her husband Chris and daughter Monica

JOLIET, IL — In October 2015, Joliet resident Tonya Vining went to St. Joseph Medical Center for back pain.

She found out she had herniated discs, received treatment for it and went home four days later.

In November 2015, she went back to the doctor’s office to get blood work done and for strange bruises she noticed on her back. A short time later, she received a phone call saying her blood platelets were dangerously low and needed to go back to the hospital to be admitted.

Blood platelets should be at around 150,000, according to Vining. Her platelets were at 10,000.

At first, doctors thought she might have thrombotic thrombocytopenic purpura, a blood disorder that leads to a low platelet count. She received treatment for that and was in the hospital for seven days.

But her platelet count continued to drop. She was hospitalized again and found out she actually had atypical hemolytic-uremic syndrome (aHUS), a rare disease which makes her blood vessels crack off and clog her organs.

“A lot of people within the first year of diagnosis need to go on dialysis because it usually affects the kidneys first, but my kidney function is fine,” she said.

However, there is a medication Vining can take. It’s called Soliris and costs around $56,000 per treatment.

“The doctor told me that I need to take this medication or I’m going to die,” Vining said.

She had some treatments for it. Nurses told her she was the most expensive patient in the hospital. Others said her treatment cost more than their car, according to Vining.

To get her Soliris treatment, Vining could end up paying anywhere between $440,000 to $700,000 per year, depending on the treatment and dose.

Right now, the Soliris treatment is on hold because Vining is also dealing with pulmonary hypertension. The treatment she has received has upped her platelet count for the time being.

Her insurance could pay for some of her medication, but it would depend on what kind of cap she has.

“It just depends on your benefits,” Vining said. “Some people have unlimited, other people have a million dollar cap. To be quite honest, I’m scared to ask.”

Vining’s still waiting to hear back on a definitive decision.

This year alone, Vining estimates she has racked up about half a million dollars between the medication and hospital stays.

Vining has two adult children and a husband who has been “awesomely amazing,” she said.

“You just kind of take it day by day,” she said. “But it’s been hard on them.”

For now, Vining will just keep moving forward and hoping for the best.

In the meantime, a fundraiser has been set up by Vining’s niece to help defray any out-of-pocket medical expenses.