Advocacy groups create niches

NATIONAL REPORTS-Patient advocacy groups have multiplied during the past several years, each creating their own niche, ranging from patient education and support, to lobbying for research funding, to funding research to help patients and their families overcome illness and disease.

But, no matter how large or small the advocacy group, Paula Kim, president and CEO of TRAC-Translating Research Across Communities, a consulting group that works with patient advocacy groups, says it's important they have a good understanding of and working relationships with health plans.

"You need to get people in the same room and do a better job of communicating and understanding each other's perspectives," she says. "For instance, I've seen major battles between advocates and policy makers who want something covered in clinical trials and insurance companies that say no, and everybody just digs in their heels."

"We've been able to negotiate with insurers in a very positive manner," she says. "We've been able to completely resolve most cases that involve appeals or preauthorization issues within the plan language."