Aid Exhausted

Pfizer prices drugs based on their value to patients and to the health-care system, Steven Danehy, a spokesman, said in an e-mail. The company offers co-pay assistance directly to many patients, and gave $7.1 million last year to non-profits for patient financial aid. It would like to offer co-pay assistance to Medicare patients, but can’t under federal guidelines, Danehy said.

At Novartis, pricing takes into account patient value, development costs and market conditions, according to Eric Althoff, a spokesman. Only 8 percent of acromegaly patients need two doses a month of Sandostatin LAR, as Piorun does, he said. The company provided $542 million of free product to more than 86,000 patients last year.

Piorun, of Kintnersville, Pennsylvania, stopped taking Somavert in September, after $8,000 in charitable aid from Patient Access Network was running out. The next month, he skipped his mortgage payment and went back on the drug.

The mortgage company called him and his wife more than a dozen times demanding payment, he said. In November and December, Piorun paid the mortgage and again stopped taking Somavert.

Ill Effects

Pfizer’s Danehy said the company recently suggested another charity to Piorun when the company learned he had exhausted his financial aid.

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.

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. 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.