Medicare patient chooses between mortgage and acromegaly drugs

UnitedHealth Group Inc., which runs Piorun’s Medicare drug plan, focuses “on providing our members with access to the drugs they need at the lowest possible cost while maintaining sustainability for our plans,” the company said in a statement.

After going off Somavert, Piorun learned from his doctor that his levels of a hormone linked to most of acromegaly’s ill effects had started to rise. He said he worries that his life will be shortened if he can’t get the medicines.

See also: Medicare drug gap risk may have shrunk.

Under his Medicare drug benefit, Piorun pays 33 percent of specialty medications’ costs until he reaches a coverage gap in the plan, also known as the “donut hole” that requires him to pick up a higher percentage. At the other end of the donut hole, he pays 5 percent of the cost.

Increased risks

From late February through early December, Piorun’s various drugs — including painkillers, blood-pressure medicines, and treatments to replace missing hormones — have cost more than $130,000, according to his Medicare benefit statements, which show his portion at $9,153.

Piorun is at “greatly increased risk” of “hypertension, congestive heart failure, diabetes, sleep apnea, neurologic damage, colonic polyps and colon cancer, as well as premature death,” without Somavert and Sandostatin LAR, according to a letter Peter Snyder, his endocrinologist, wrote for the Pioruns in February, when they were trying to get insurance authorization.

Snyder says he regularly sees patients who are having trouble affording acromegaly drugs.

Piorun and his wife Robin, who have one grown son, live in a four-bedroom house on two acres of converted farmland not far from the Delaware River. He keeps his truck, a 2004 white Chevrolet, in a shed stacked high with wiper blades, oil filters, and other basic auto repair supplies.

Thickened fingers

Acromegaly makes it harder to do the job, which involves 40 hours on the road each week to service station customers across eastern Pennsylvania and New Jersey, and added work at home stocking the truck. Robin Piorun, a 63-year-old retired nursery school teacher, helps out when her husband is too tired.

Abnormal bone growth from the disease has made his fingers unusually thick and painful. Piorun said walking more than a few hundred yards at a time hurts because of bone spurs in his feet. He takes Vicodin and Celebrex for the pain.

He said he’d like to retire, but can’t afford to because of the medical expenses. His wife has medical expenses too, and pays $687 a month premium for a plan under the Patient Protection and Affordable Care Act (PPACA). Every day when he gets into his truck, which has 206,000 miles on it, he wonders if the engine will go, which would mean another big bill.

Somavert’s price has risen 63 percent since 2010, when Piorun started taking it, according to data from DRX, a unit of Connecture Inc. that provides comparison software for health plans. Pfizer declined to comment on those figures.

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, Va. 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. Sen. 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 & Medicaid Services (CMS) 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.”