What does health care reform mean for a family like ours?
Simple.
It means we no longer have to lose sleep worrying about heading for bankruptcy when we hit the lifetime cap on our health insurance policy and become immediately uninsurable – with no safety net from either the private or public sector – due to our daughter's now “pre-existing” terminal illness, Spinal Muscular Atrophy (SMA)
It really is that simple for us.
No, I'm not naive enough to think the health care reform recently signed into law is going to be the perfect solution and, yes, I know there are many uncertainties surrounding the scope, implementation, and cost of this massive legislation, but there are two major provisions that will have a material and almost immediate impact on our family and on millions of people in extremely challenging situations: the abolishment of health insurance denial based on pre-existing conditions and the notion of lifetime policy caps.
We have private health insurance through Health Net (have I mentioned that Health Net increased our health insurance premiums by 82% over the last two years). Policies like these, and most health insurance policies for that matter – individual and group, have lifetime caps associated with them. Think of these as a ceiling; the amount that the health insurance company is on-the-hook for over the life of your specific policy. We put our policy in place years ago when we were first married, didn't put a second of thought into the lifetime cap, and definitely never thought one would ever become so relevant so soon. Who would?
Gwendolyn is dependent on many machines to eat, breathe, cough, and swallow, requires 24/7 medical attention, has been hospitalized in the pediatric intensive care unit (PICU) for over 2 months of her life, had surgery to place a tube in her stomach to allow her to feed and the upper end of her stomach wrapped and stapled to her esophagus to make it impossible for her to reflux and aspirate, and has had several very expensive medical transfers. This is all very expensive stuff that is necessary to keep her alive and continue to provide her the quality of life that every human being deserves. At 2 1/2 years old, the billed cost of Gwendolyn's care is well over $1M and the ongoing day-to-day cost is hundreds of thousands of dollars per year — assuming she stays out of the hospital – which is an impossibility given the reality of SMA.
Since the day we learned of Gwendolyn's SMA diagnosis we've worried about the lifetime cap of our health insurance policy. And as we've inched closer and closer to it, the fact that we'd lose our private health insurance once we hit it and would become 100% uninsurable at any humanly affordable premium due to Gwendolyn's SMA – our pre-existing condition – was constantly in the back of our minds. The grim simple reality is that – assuming Gwendolyn is still alive – once we hit that lifetime cap we'd be dropped by Health Net, uninsurable, and would be left with no affordable alternative to cover a minimum of hundreds of thousands of dollars per year in basic care for Gwendolyn. We'd be headed for bankruptcy and would become another victim of the for-profit health care machine. Keep in mind that according to a Harvard study, medical issues caused 62% of all personal bankruptcies in the U.S. in 2007 and that 78% of those bankruptcies had health insurance at the start of their illness, including 60% who had private coverage, not Medicare or Medicaid. That 60% would be us. This legislation should change that trend.
None of us ever believes a life-altering medical situation like ours will happen to them and I truly hope that it never does for you. The reality is that it can – to anyone, at any age, at any second. And when it does, your entire world is turned on its head in an instant. This legislation will finally right two terribly immoral and ugly appendages of the health insurance industry and will allow millions of people and families — just like ours — in trying, desperate situations to sleep a little sounder.