Slipping Through the Cracks

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Some say our health care system is broken. Others say there are problems, but for the most part, it works as well as, if not better than, other systems.

Some say universal care such as exists in other countries is the answer, yet none of them have found a perfect system either. As long as there is a limited supply of resources (medical providers, funds, etc.) stacked against an unlimited demand for services, there will be shortfalls, even in the best systems.

The WSJ recently profiled one such case. The case of Barbara Calder illustrates a combination of factors that collided to create a perfect storm of health care misunderstanding with few answers. Sadly, the health care system as it exists now is akin to the legal system where life moves at a snail's pace absent clearly defined rules that could lead to a resolution.

Front #1, "Mrs. Calder suffers from Ehlers-Danlos Syndrome, a rare genetic disorder". Barbara has a disease that affects 1 in 5,000. Very few doctors have heard of the illness or know how to diagnose and treat it. This can create a problem in any system, regardless of the way coverage is funded.

Storm front #2, even the taxpayer funded systems failed her. "Unaware of the true cause of her symptoms, she applied for Social Security disability benefits in February 2006. Her application was rejected because her disability was deemed not severe enough." Without a diagnosis, Social Security rules called for a denial. Her initial appeal was denied because she still lacked a diagnosis because a "vocational expert for the Social Security Administration argued her joint problems shouldn't preclude her from working because cooking was a "sedentary" profession".

I suppose this "vocational expert" has never spent any time in the kitchen. I cook most of the meals in our family, am not afflicted with a debilitating disease, and can tell you there is nothing sedentary about cooking.

Even when S.S. finally did approve her claim (almost 2 years after she became disabled) she has a two year wait before she can apply for Medicare . . . the government run, taxpayer funded system.

Storm #3 is the managed care system, or as we like to refer to it at InsureBlog, "mangled care". Barbara could not get a consult with a specialist without a referral from a PCP (primary care physician). She could not get special testing (to prove or disprove her illness) without approval from her carrier. Even when diagnosed, she could not get the medicine prescribed by her doctor until she followed protocol by first trying OTC medications.

All of this has been further complicated by periods where she was between coverage. When she became insured again it was under a new carrier with new rules and new providers. Each time she changed plans she had to virtually start over and learn the new rules set by each carrier.

This is a two edged sword.

If Barbara were covered under a so-called universal system (such as Medicare) she would still fall between the cracks. In fact the safety net for disabled persons is a morass of forms, waiting periods and legal shenanigans that result in all but the most diligent from becoming covered. Had Barbara not had a working spouse who was able to obtain coverage through the private funded system she would have dangled by a thread for 4 years before finding any coverage.

Coverage under the privately funded system, while flawed, at least provided some coverage and eventually led to a resolution.

Barbara's story is not over. She will most likely continue to fight private carriers while waiting on Medicare to kick in. Even then her battle will most likely continue. The government funded systems (most notably Medicare) is equally flawed but in different areas.

Her first challenge will be finding a P.C.P. who is willing to accept new Medicare patients. She may have the same issue in finding a specialist who concurs with the diagnosis and is permitted under C.M.S. rules to authorize the necessary treatment.

The combination of a rare disease, taxpayer funded programs and mangled care created a perfect storm of health care collapse. Her case is truly a sad situation and we wish her the best.

At the same time her battle is not over and may not be for a long time. Even if she were to seek "medical asylum" in another country there is no guarantee her treatment will improve. Every system with limited resources vs. unlimited demand has flaws.

No matter where she turns she will most likely find herself slipping through the cracks of an over-burdened health care system that suffers from limited funding.