Lying in bed at University Hospital, Kathleen Lisko reaches her left hand out for her husband, Gary, who takes it tenderly.
“You talk about worn out,” he said. “I’m so glad this is over.”
For the past month, Lisko’s family has been fighting to get her back into a pharmaceutical company’s patient assistance program, which is the only way she can afford the expensive drug that allows her to live a normal life. Not only did their efforts pay off, but the family also says it also has persuaded the company to rethink its policies.
Lisko endured five years of a baffling illness that caused dry heaves, pain and sudden trips to the emergency room before she was diagnosed with an electrolyte disorder. She could not maintain an adequate sodium level until she was put on Samsca (tolvaptan), which she called a “miracle drug.”
The drug came with one huge problem – it costs $9,000 a month – but the family was able to qualify to get it free through a patient assistance program by its manufacturer, Otsuka America Pharmaceutical Inc.
Earlier this year, after the company discovered that Lisko had prescription drug coverage through Medicare Part D, it dropped her from the program because of a rule that patients with that coverage are ineligible.
Even with Part D, the family would have to pay thousands the first month until it reached catastrophic-coverage levels, and after that the co-pay would be $525 a month, Gary Lisko said. That would be hard for the couple, who are on disability, he said.
He and their daughter, Jennifer Andrews, called everyone they could think of until reaching Otsuka’s medical director, who took an interest in the case.
Kathleen Lisko was unable to sleep Sunday night – “I have dreams I’m not going to make it” – and she went to her computer and found an e-mail from the medical director saying she could get the drug again.
“I ran into the bedroom to wake Gary up,” she said, “I was just ecstatic. It meant I was going to live.”
The company will evaluate on a case-by-case basis whether Part D families will get into the assistance program, Andrews said.
“I’m thrilled for all of those other people, too,” she said.
The company did not return calls seeking comment Friday.
Getting back on the drug meant going into University for a couple of days because Lisko needed to be closely monitored while restarting it, which is hard for the couple, married for 32 years.
“We don’t leave each other’s side much,” she said.
She was discharged Friday, and Gary Lisko made sure the drug was there when she got home. Her sodium levels are already back up, and she no longer has to measure carefully everything she drinks to limit herself.
Lisko is grateful to her family; her church, Trinity on the Hill United Methodist; and all of those forces working on her behalf.
“To fight the good fight is worth it,” she said. “It’s not me. God was with us.”