And He Cured Many Who Were Sick
Health Care

Think Your Health Insurance Will Protect You?

When Doug’s neurologist told us he had Amyotrophic Lateral Sclerosis, “Lou Gehrig’s” disease, everything in the exam room became white. My mind sped forward while everything else lagged behind in slow motion. The room grew smaller. I couldn’t breathe. No diagnosis could have been more devastating. My best friend, my lover, my 36-year old husband and father of our three young sons – then ages 3, 7 and 11 – was going to die. 

Of all the losses this cruel disease would mean for us, few were more unexpected than the barriers to health care. Though still a medical mystery, the course of ALS was well charted from Lou Gehrig’s biography. What was uncharted for us, and many other families faced with health crises, was the maze of bureaucratic obstacles that made health insurance superfluous. It became clear that health care is a privilege - available to few who really need it.  At age 36, Doug had just hit his stride. In a job he’d spent 20 years refining, Doug had done the “right things” by popular definition. Promoted to a professional position he excelled in and enjoyed, he earned enough for me to be a “stay-at-home” mom until the boys were old enough for school. He bought a good health insurance policy as well as dental and eye-care insurance. He bought life insurance and invested in retirement funds, including his company’s 401K. Beyond that he’d had the wherewithal to purchase both long- and short-term disability policies. With the exception of our mortgage, we were debt free. By all accounts, we were fortunate and had all we needed, or so we thought.

What we discovered was that health insurance is available only when it isn’t really necessary. Once Doug was disabled, he was unemployed and unemployable. Without a job, the clock was ticking on access to health insurance. The first six months of his disability, Doug received short-term disability benefits that helped us stay afloat while we awaited approval of his Social Security claim. Still, with the new expense of insurance deductibles and 20% co-payments, we were rapidly depleting our resources.  The single ALS-specific medicine cost $1,300 per month. Combined with other medicines prescribed for symptoms of ALS, the cost quickly reached $2000 – more than our mortgage payment!  At the seventh month of disability, Social Security began making payments which, when combined with private disability insurance payments, matched Doug’s income when he became disabled.  Unfortunately, he would not be eligible for Medicare for another 18 months. The only available insurance was through Doug’s COBRA extension of his former employer’s group coverage, but that would be at full premium rate which we simply could not afford. Our church and extended family made that coverage possible until we reached the 29-month limit on that extension.

At 29 months, Doug was uninsured and uninsurable. What do you do when your body is dying but you are still intellectually alive and active, yet not allowed to work or pay for your own health care? What happens to the three children for whom you are still a hero, still a needed and meaningful presence? Does it become incumbent on the sick to die when they can no longer work?  Although Medicare would ultimately cover durable medical equipment and doctor appointments, it would not cover his 14 prescriptions or private duty nursing necessitated by complete flaccid paralysis and ventilator-assisted breathing. Medicaid was, and is, the only available option; and its availability is contingent on financial destitution. We were not yet financially destitute.  To meet that criterion, all of the resources Doug had so carefully set in place would have to be spent first. Having disability benefits meant we made too much money. In order to qualify for Medicaid coverage, we would be responsible for health expenses “spend down” payments until we had little enough to qualify for help. In our case, this means we have to “spend down” approximately $32,000 per year, leaving $645 a year after medical expenses for a family of five to live on. Only then would we be eligible for Medicaid coverage.

For all the moral outrage expressed by public policy makers, far too little has been said about the right to health care. Our story is not unique. People who have lost jobs for reasons having nothing to do with their own health are nevertheless uninsured and – with any “pre-existing conditions” (diabetes for example) – uninsurable. With cuts in benefits in all sectors of employment, it is particularly poignant that the very people who are our health caregivers are themselves likely to be uninsured.  As a modern democracy, we are charged with protecting our most vulnerable citizens. Communities thrive only where everyone contributes what they are able. Taxation is supposed to be the community chest that provides for needs no one can meet alone. We owe each other this much because there is no “one” without another. There is no “life, liberty or pursuit of happiness” where there is no right to health care.

Stephanie Phillippi, member of Binkley Memorial Baptist Church, August 2004 (from NC Committee to Defend Health Care)