Paul Martin has a terrible story to tell of how his health plan let him down badly, and how the health care system is stopping him getting what seems necessary care. I of course only have his word for all this, but at THCB we from time to time try to remember that health care is about real patients with real problems.  And Paul certainly fits that description:

Here is a summary of some of the things I’ve experienced in dealing with our health care system over the past 12 years. After a major health insurer (“MHI”) bought out my school district’s insurance in 1998, they permanently terminated the one benefit which, at the time, appeared to be allowing me to make slow headway against MPS — the rare disease with which, it would later turn out, I had been misdiagnosed.
Every mediator, doctor, and lawyer who looked at my policy’s language agreed that the provision cited by MHI to justify its termination did not do so. The doctor trying to prescribe the treatment was one of the world’s leading authorities on MPS. My local specialist, a participating provider with MHI, wrote two forceful letters on my behalf, terming MHI’s decision against me "arbitrary."
MHI nevertheless terminated the benefit.

When, as a last resort, I started calling law firms, the first three I called couldn’t help because they were already being retained by MHI. Hundreds of letters and calls later, it became clear that no lawyer was going to take my case. Lawyers know the legal deck is stacked against them when it comes to defending patients against insurance corporations. Examples: boilerplate policy language that explicitly allows medical directors to overrule the treatment decisions of patients’ doctors. The deep pockets of insurance corporations that allow them not only to retain outside law firms, but their own legal staffs.

Two outcomes of MHI’s decision: 1) I became an "HMO refugee" – forced out of my job and out of my home state. Most of the school districts in my region were insured with MHI. How could I remain employed in a situation where I was covered for everything except the one treatment that all my doctors were recommending?  2) Watching my condition deteriorate, I took half my life’s savings and spent them on an experimental therapy with a good reputation that was less expensive than what my doctors wanted. The three weeks of therapy caused irreparable harm.

About a year ago, after experiencing increasing difficulty keeping outpatient appointments, I was permanently hurt on 2 out of 3 of my last doctor visits. My neuromuscular condition had become too fragile to allow safe transport by any means. Ever since, my family and I have been trying to arrange for physicians to come to my home. During this time, what began as a slightly impaired ability to take walks turned into the complete loss of that ability, then the loss of the ability to drive. By now I am only able to move about the house with a shuffling gait, and must spend increasing amounts of time in bed to alleviate pain.

As one example of the obstacles to home care that we have faced here in Delaware County PA (a suburb of Philadelphia): Delaware County Visiting Physicians does not accept Blue Cross/Blue Shield, only Medicare. I was granted Medicare as part of my social security benefit. However, social security does not allow the benefit to become active for two years.
Although my primary symptoms are soft tissue wasting and pain, I cannot receive pain medication. Federal law prohibits even immediate family members who are carrying the patient’s identification from obtaining pain scripts for the kind of serious (morphine-based) pain medication doctors were prescribing for me when I could still function as an outpatient. The patient either goes to the pain specialist’s office – at a minimum, every 30 days – or does without. (I worked as a school counselor for 23 years and have zero history of substance abuse, addiction to any drug, or even recreational drug use.)
The condition underlying my tissue wasting, severe osteoporosis, peripheral neuropathy, and a few enigmatic skin lesions "consistent with Sarcoidosis," remains unidentified.

Over the course of 12 years, I have proceeded from one specialist to another, usually at my own initiative. I have learned that a patient with an unusual and complex condition, arriving with the 50-page abridged version of his medical record, seldom receives more than the usual 10 minutes. There has never been a coordinated effort among specialists to reach a diagnosis or treatment recommendations. The minimal communication that has occurred among them has almost always been at my initiative.
In brief, a corporate dominated system of health care has no financial incentive to spend the extra time and resources to care adequately for patients falling outside the "best practices" box designed to meet the needs of the many. That’s where the money is.