July 21

Scott Scanlon

Juliana Keeping, of Oklahoma City, had to pay $1,000 out of pocket – five times – for a drug that prevented her 4-year-old son from catching a severe cold that could have had a catastrophic effect on his cystic fibrosis. Her insurer denied payment for the treatment, citing a 1960s study on handwashing.

Tanya Koller, 53, of Schenectady, has battled diabetes for decades and more recently was diagnosed with bipolar disorder. She landed on Medicare because of her disabilities, but under Part D, her monthly supply of medications still cost her $1,700 out of pocket.

David Mitchell, 67, spent several hours one day last week getting an infusion of two drugs that help stave off multiple myeloma, an incurable – but treatable – blood cancer he has battled for almost seven years. The cost: $20,000.

“I’ll need 22 more of these treatments over the next year,” said Mitchell, of Potomac, Md. “I’m a very expensive baby; $450,000 worth of drugs a year are keeping me alive.”

Medicare, including the Part B supplemental insurance he pays extra for, will cover the cost. But an oral drug called Revlimid – a medication he once took – costs Medicare patients with Part D coverage about $11,500 a year out of pocket.

The median annual income of someone on Medicare is $26,200.

That kind of devastating math is why Keeping, Koller and thousands of others have shared their stories with the nonprofit Patients for Affordable Drugs, which Mitchell established and helped build during the last several months. He hopes people from Western New York will be among those willing to shed light on the impact of the cost of prescription drugs on a health care system he says is rigged against consumers, patients and taxpayers.

Ben Wakana, a former spokesman for the federal Department of Health and Human Services, is executive director of Patients for Affordable Drugs.

“Our core belief in setting this up is that drug prices are not going to come down unless patients stand up and fight for lower drug costs,” he said. “One of the things we encourage people to do – after they figure out their own situation – is to share their story with us. That is where we can help them, and make sure that their local elected officials or federal officials or governor or policymakers understand that high drug costs are taking a toll on people right now, and that we need action.”

Mitchell, who retired last year to put his energies into the nonprofit, worked three decades as a strategic communication specialist focused on health care and public health. He helped bring the Click it or Ticket seat belt initiative, Mothers Against Drunk Driving and the Campaign for Tobacco-Free Kids to the national stage.

Wakana and Mitchell talked by phone this week about their latest public health effort.