Author’s note: Almost everyone agrees that, in some manner, the healthcare system needs reform. I believe that transparency is a fundamental element in meaningful and lasting healthcare reform. The thesis of the following posts is that the system is so broken that it holds hostage even its own participants. My family has authorized and encouraged the level of personal detail contained in these posts in the hope that something good can come from our experience.

Part I: Why Value Matters to Me

My oldest son has Duchenne Muscular Dystrophy (DMD). DMD is a rare and serious form of muscular dystrophy that affects only boys. DMD causes muscle cells to be unable to regulate calcium correctly, which results in their calcification and destruction. Between the ages of 11-13, the decline in muscle strength intersects with an increase in weight at puberty, at which time the boys lose the strength to walk and become wheelchair bound.

My son was fortunate to continue walking until Memorial Day weekend of 2008, after which he began to use a manual wheelchair much of the time. At that point, I started the process of ordering him an electric wheelchair.

Knowing that your child will ultimately be wheelchair-bound triggers many thoughts and emotions, one of which is the dread for the inevitable fight with the insurance company. From the time that I learned of my son’s diagnosis in 2004 until he told us that he wanted the chair, I had health insurance coverage through several plans, including a self-funded plan, HealthSpring, Blue Cross of California, and United Healthcare. Except for the self-funded plan, no plan provided coverage for more than $2,500 for a wheelchair, for which the typical retail price is over $20,000.

At the time that we ordered the wheelchair, my coverage was through United, which I anticipated would make acquiring the wheelchair very difficult. In hindsight, I was overly optimistic.

Despite being in the healthcare business for almost two decades, it took me almost one year to discover what an electric wheelchair costs. The summary version, which will be explained in detail in the following posts, is that ordering the wheelchair through United cost over 100% more than if I had bought the wheelchair with cash. In other words, being uninsured and forced to pay out-of-pocket would have saved me 50% over what I paid after using all of United’s purchasing power.

I have argued repeatedly that the only legitimate (i.e., not Beltway math) way to pay for reform is to tax the employer-sponsored benefit. That, in turn, is the only likely positive unintended consequence of healthcare reform – the “shock and awe” that is currently being focused on partisan advertisements would instead become the fuel of a consumer revolution in healthcare to usher in a value-based healthcare economy. As you will see in what follows, I think that all of us would ultimately benefit.