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Family's fight gets patient needed drug

Friday, March 1, 2013 6:34 PM
Last updated Saturday, March 2, 2013 1:34 AM
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Lying in bed at University Hospital, Kathleen Lisko reaches her left hand out for her husband, Gary, who takes it tenderly.

Kathleen and Gary Lisko fought for a month to get back on an assistance program that helped pay for an expensive drug.  TODD BENNETT/STAFF
Kathleen and Gary Lisko fought for a month to get back on an assistance program that helped pay for an expensive drug.

“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.”

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TrulyWorried 03/01/13 - 08:13 pm
Receiving help with expensive medicine

Good luck to you and I hope that many other patients in similar situations can get the assistance they need. It is a known fact that the pharmaceutical companies can well afford it. God bless you and your family!

Bantana 03/01/13 - 08:30 pm
Praise to all

Thanks to all those that brought the heat and "helped" the pharmaceutical firm to see "the light". This is an issue that affects tens of thousands of American that need super-expensive drugs to treat what are often termed "orphan diseases". The process to manufacture these niche drugs is wildly expensive with the potential customer base very small in comparison to the millions needing drug therapies for more common maladies such as, high blood pressure and erectile dysfunction. There is nothing more anxiety ridden than to have a deficiency where there is a pharmacological solution, but with no way to afford the treatment. These little-know diseases or deficiencies are 100% triggered by genetic issues and are not percipitated by a patient's poor lifestyle choices. Take the time to include those victims in your prayers and remember them when writing your elected officials on matters related to the high cost of healthcare in America.

itsanotherday1 03/01/13 - 09:55 pm
Good thoughts Bantana. I have

Good thoughts Bantana. I have friend in renal failure that faces similar challenges. THOSE are the folks we don't mind helping.

GiantsAllDay 03/01/13 - 11:12 pm
Bless you, dear lady. I hope

Bless you, dear lady. I hope you have some smooth sailing from here on out.

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