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Patients desperately seek help for drug co-pays

Each time Judith Postol swallowed a pill in May, she’d anxiously count down how many were left.

Her money was almost gone, and so were the pills that treat her blood disorder, called ITP.

Without the Promacta pills, which cost $4,335 a month -- she pays $1,445 out-of-pocket -- her platelet level tanks and her blood won't clot. Then, even a sneeze could cause bleeding to her brain.

By the time she found out in late May that she would get one year of free drugs from the manufacturer, 69-year-old Postol was frantic. It’s the fourth time the former Kmart manager thought she would run out of drugs, only to be saved at the last minute.

“I’m afraid to believe it,” she said, her voice giddy with relief. “There have been so many ups and downs, it just seems unreal.”

Postol is far from alone. Many patients who have expensive medications are on “a constant roller coaster” in their quest for the drugs they need, said Lynn Kuykendall, the office manager at Palm Beach Institute of Hematology & Oncology, where Postol has received care for seven years.

He said that 20 to 25 percent of patients in his office struggle to afford their drugs, and his staff spends countless hours counseling patients and negotiating with insurance companies and drug manufacturers.

“It seems to have grown a lot worse in the past five years,” he said. “It’s especially unfortunate if we know the person has a manageable problem and we can do nothing but keep putting band-aids on it."

Patients have seen increased premiums and co-pays in recent years, even as benefits were reduced. Meanwhile, some insurance companies have raked in double-digit profits, Health News Florida reported last week. Humana, Postol’s insurer, earned an impressive $330 million in Florida last year.

Many patients, like Postol, patch together temporary solutions, going to drug manufacturers and non-profit organizations to try to get what their insurance won’t pay for.

Healthwell, which paid Postol’s co-pay for Promacta in May, helps patients pay for drugs related to 40 different medical conditions, said Mary Sundeen, president of the organization.

Her organization and others like it, which are funded by donations, don’t come close to meeting the demand. The non-profit must cap the amount it gives each patient in order to serve as many patients as possible, she said.

“We see across the board that people don’t know how bad their insurance is until they really need it,” she said. “We get 2,400 phone calls per month, and we hear stories like (Postal’s) from every person who calls.”

The hardship for patients can be both medical and financial, she added.

Postol, for example, had to switch drugs in January after Humana informed her that her previous drug, a monthly injection called Nplate, was no longer on its formulary list.

She tried to switch to a plan that would cover Nplate, but could not because Medicare allows plan-switching only once a year, taking effect Jan. 1.

Her doctor wrote a letter to Humana, informing the HMO that tampering with Postol’s medication could cause her to become very sick or die. Postol also appealed Humana’s decision not to cover Nplate but was denied.

Humana spokesman Mitch Lubitz said Humana notified Postol before the enrollment period that she was choosing a plan that would not cover the injection.

But Postol said that the opposite happened. A Humana customer service representative told her that Nplate would be covered in full, she said.

With a double mortgage on her house and no savings, Postol couldn’t afford Promacta, the drug Humana had approved. So she went without medicine for three months, predictably ending up with dangerously low platelet levels.

“When I didn’t have my medicine, I couldn’t function at all,” she said.

In March, Postol’s doctor instructed her to pack a bag for the emergency room and take a steroid to help keep her platelets up temporarily.

The steroids kept her well enough to avoid the hospital until Healthwell stepped in, paying for her Promacta until the end of May.

By May 10, Postol had paid enough to get out of her plan’s ‘payment gap,’ which limits her out-of-pocket expense to $4,450.

Humana would have paid most of the drug’s cost for the rest of the year, leaving Judith with a co-pay of $212 per month.

Because the cost of her medicine took her in and out of the payment gap so quickly, Postol didn’t realize she was entitled to the lower co-pay until after GlaxoSmithKline agreed to supply the drug for free for the year.

She and her husband live off $2,000 per month in social security. She’s likely to have to fight for the drug again next year after the manufacturer’s offer runs out, she said.

“I've had the rug pulled out from me so many times,” she said. “I've been so excited, so happy. A month later it's all done. It takes a heck of a lot out of me.”