Is Your Parents' Health Your Destiny?

I attended a health technology forum recently in Silicon Valley, and, not surprisingly, the issue of health care for Baby Boomers came up. A number of promising new technologies and services are being developed to keep Boomers healthier and help them avoid expensive hospital stays as they age.

The people who are watching Boomer health most carefully, however, are not those creating and funding these new technologies; they are the children of the Boomers. As some speakers noted at the forum, many children of aging parents want to take steps now to avoid developing the chronic illnesses that they see their parents struggle with.

I thought about children of the Boomers when I read the article "12 Ways to Live a Better Life" in the Washington Post this week, based on the book 30 Lessons for Living: Tried and True Advice from the Wisest Americans by gerontologist Karl A. Pillemer. The book compiles life advice from 1,000-plus elderly that Pillemer interviewed, including advice to make healthy changes early in life to help avoid the miseries of chronic disease later in life.

The Baby Boomers are certainly driving changes and innovation in health care. But their children, who are starting to see first-hand the effects of extending life without improving the quality of life, are the ones who will probably work hardest to decrease the high rate of chronic disease in the U.S.

Not-So-Rare Rare Diseases

I’ve been writing about epilepsy recently, a neurological disorder that affects about 1% of the population (especially infants, young children, and the elderly). With the roughly 80 million Baby Boomers starting to retire now, the number of people with epilepsy will increase even more, since the incidence increases in people 65 and over.

Despite these statistics, however, epilepsy research is underfunded for its incidence rate. This is due in part to stigmas that still surround epilepsy, such as the misconceptions that epilepsy is a sign of mental illness or low intelligence, or that it is contagious. These stigmas make some epilepsy patients and families reluctant to speak out about the disease, and consequently there is less patient advocacy for research funding. In medicine as in life, the loudest voices often get the most attention.

It doesn’t help that the National Institute of Neurological Disorders and Stroke (NINDS) lists the National Organization for Rare Diseases (NORD) website as a helpful organization for epilepsy patients, thus implying that epilepsy is a rare disorder. Perhaps NINDS refers readers to NORD because epilepsy is an umbrella term for a group of benign and malignant neurological syndromes, and some of these syndromes are less common than others. Since the incidence of epilepsy is bound to increase in the future, however, I think it’s important to rethink how to categorize epilepsy. It is complicated? Yes. Is it rare? No.

Semantics, stigmas, politics, money: how is medical research funded?