After five years of mysterious dry heaves, pain and frequent trips to the emergency room, Kathleen Lisko was finally diagnosed with an electrolyte disorder in 2009 and put on a just-approved and very expensive drug that stabilized her sodium levels.
“It’s a miracle drug,” she said of Samsca (tolvaptan), and she even told the company’s founder that in a birthday video.
“She thanked him on camera and said, ‘This miracle drug saved my life,’ ” daughter Jennifer Andrews said.
The only way the Augusta woman could afford the $9,000-a-month drug, however, was getting it free through the Patient Assistance Program of the manufacturer, Otsuka America Pharmaceutical Inc.
All of that changed this year through a bureaucratic entanglement, but the family is hoping its relentless efforts since have gotten Lisko back on the drug.
In 2004, she had suffered dry heaves for days when finally she hit rock bottom. She was found crawling on the floor toward the bathroom and apparently hallucinating. She had to be taken by ambulance to a hospital, family members said. Testing showed her blood pressure was very high, Lisko said.
“It was bad,” she said.
Exactly what she was suffering from was unclear, but the doctors thought it was serious, Andrews said.
“They were looking for stroke, they were looking for heart attack,” she said.
They could get Lisko back to somewhat normal with fluids, but the exact cause continued to elude doctors, said her husband, Gary.
“At least once a month,” he said, she would need to be rushed back for more fluids.
“It’s vile,” Kathleen Lisko said.
She was diagnosed in June 2009 with syndrome of inappropriate antidiuretic hormone secretion, in which her body cannot maintain an adequate sodium level; it throws off her electrolyte balance. Samsca had just been approved by the Food and Drug Administration, but the family was thrown by the cost.
“When I heard it was $9,000 (a month), who could pay that?” Kathleen Lisko said.
“It’s hard for anybody to afford that cost,” Gary Lisko said.
Both are disabled and on Medicare, but she still qualified to receive the drug through the company handling the Patient Assistance Program for Otsuka. A new company was brought on board recently, however, and the family had to reapply.
Lisko had signed up for a Medicare Advantage plan that, unbeknown to them, included a Part D prescription drug plan. The Liskos were then informed that because the prescription plan covered the drug, she could no longer receive it through the Patient Assistance Program and she would have to pay a third of the cost as a co-pay, or more than $3,000 a month. The family began scrambling, contacting U.S. Rep. John Barrow and the state’s senators for help. They were also referred to GeorgiaCares, the state health insurance program to provide local assistance for Medicare patients, which has representatives at the CSRA Area Agency on Aging. The family faced a deadline of Thursday to make changes in Lisko’s coverage, but after it studied all of her needs it was advised not to change.
“She was trading one out-of-pocket cost for another,” said Lauren Spivey, the Elder Rights program manager, who ran the numbers for the family.
Gary Lisko and Andrews also made calls to the manufacturer and the company handling the patient assistance program, going up the ladder until finally the medical director called back to say the company was working on a way of getting Lisko back on the drug after more than a week off.
The company just heard from the family Thursday, said David Caruba, the director of corporate affairs and strategic communications for Otsuka America.
“We’ve been in touch with them to discuss options to help, and we’re still in touch with them,” he said.
“They just have to figure out a way to do it,” Andrews said. All along, everyone acknowledged “it’s a travesty,” she said, but finally someone with authority listened.
For now, the family is optimistic but would still like to see proof Lisko can get back on the drug again.
“I’ll believe it when I see it,” Andrews said.