In Trouble

Until this year, Piorun was on a private plan that required a co-payment of only $60 a month for each of his two main drugs, and had no idea how much the full price was. The private plan was canceled by the insurer in January.

After he went on his new Medicare drug plan in February and a pharmacist told him how much the drugs cost, “that is I when I realized I am in trouble,” Piorun said.

In February, he took a week off and worked the phones looking for assistance. He said it was hard to get a clear answer from drug companies about what aid he might qualify for. Some forms from charities suggested the Pioruns wouldn’t qualify if they owned a car or a house and weren’t destitute, Piorun said. Several others didn’t offer aid for his disease.

Eventually, Robin Piorun talked to the Patient Advocate Foundation, of Hampton, Virginia. It hooked them up with Patient Access Network, which has an acromegaly fund that provided the $8,000 grant. By August, the money was almost gone, and Robin said she had been told they couldn’t apply for more aid until January 2015. That month, Piorun didn’t fill his Somavert prescription.

Policy Change

Realizing that the aid was running out, Robin Piorun connected with a staffer of U.S. Senator Bob Casey, whose office said it is working on the problem. On Aug. 29, she sent a letter to President Barack Obama complaining about high drug co- payments.

Five weeks later, a reply from a health-insurance specialist at the federal Centers for Medicare and Medicaid Services said the government can’t dictate co-pays to the insurance companies. The official urged her husband to shop around for a better plan.

On Dec. 19, after Bloomberg News called Patient Access Network about the Pioruns, Klein, the charity’s CEO, said he planned to revise the fund’s policy to allow for additional grants for acromegaly patients who need them.

If William Piorun doesn’t get more financial aid in 2015 than he received in the past, he said the funds will run out by summer and he will have to cut back on his medicines again.

“We are going to have to go through this every year,” said Piorun. “It is very stressful and exhausting.”
 

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