When Care is Too Costly

By Randolph Fillmore, Special to the Times

For 59-year-old Keith Parke, quickly going blind, it was a choice between medication and his daughter’s college tuition.

“I couldn’t afford both,” says Parke, of Middleburg, near Jacksonville. Before he went on disability because of macular degeneration, he ran a branch of the Epilepsy Foundation.

Parke knew that if he wanted to literally see his daughter graduate, he’d need help to afford injections of Lucentis. Each month’s injections total $4,000. His copay is $2,000.

He found several nonprofit organizations that help people afford medication and high copays. One foundation turned him down, but the HealthWell Foundation, in Gaithersburg, Md., did not.

HealthWell’s “board of directors are pretty aggressive in finding out where the needs are,” says David L. Knowlton, one of those directors. “We provide financial assistance to eligible patients to cover . . . medications, copays, health insurance premiums and other expenses.”

Parke’s case is unusual because macular degeneration – deterioration of the retina – more often afflicts much older people. As a young man, Parke had brain surgery; his antiseizure medication since then has caused vessels within his eyes to bleed.

Medicare doesn’t help with treatment costs because macular degeneration is classified as an age-related disease, and Parke would not be eligible until he was 65. By then, he knew, he’d be blind.

But treatment with Lucentis has “helped tremendously,” says Parke. He says he still has good vision in one eye.

According to Knowlton, when medical insurers first required patients to make co-pays for doctor visits and medications, the amounts were small.

“Insurers wanted patients to . . . appreciate the cost of care by paying something beyond what their insurance did,” said Knowlton, also president and CEO of the New Jersey Health Care Quality Institute.

Over time, copays have risen; some have skyrocketed.

The nonprofit foundations that make some of these copays receive most of their funds from other foundations that typically focus on researching specific diseases, such as various cancers, lupus and diabetes.

The HealthWell Foundation, however, helps patients with 23 diseases. The Patient Advocate Foundation (Co-Pay Relief) assists people diagnosed with any of 14 illnesses.

“Our copay relief is just one of 17 programs” offering help, says this Foundation’s chief program officer, Beth Darnley.

“Last year we received 1.6-million calls (for aid), and we opened 39,000 unique cases.”

Knowlton says the HealthWell board reviews an average of nearly 13,000 applications a month. The directors inventory the illnesses for which people seek help and then decide what to spend, where.

According to Knowlton, the HealthWell Foundation in 2006 paid about $47-million for more than 16,000 patients.

Randolph Fillmore is a Tampa freelance writer.