Margalit Mathan and Peter August found themselves caught in a maze of medical appointments and conflicting professional opinions when their 7-year-old daughter developed serious eye problems related to her juvenile rheumatoid arthritis.
The Berkeley family decided to consult yet another professional. They turned to a health care advocate, an adviser who specializes in helping patients and their families cut through the health care bureaucracy to find the help they need.
“It’s been this huge roller coaster with the medical system and negotiating her different needs and the different information we’re getting from different doctors,” said Mathan, a high school psychologist. Her daughter, Siona, was diagnosed two years ago with arthritis, a condition that can cause eye inflammation and, in Siona’s case, led to glaucoma.
Private health care advocacy is a new and growing field emerging at a time when an increasing number of Americans find themselves dealing with a chronic disease, aging family members or the bureaucracy of health insurance.
A professional advocate might have some background in health care, such as nursing or medical social work. But the business of health advocacy is unregulated, and people who call themselves a health advocate might have no training other than helping a family member through a difficult illness.