When a diagnosis isn't: Insurance (or kidney) roulette

8/19/08 edit: This was also picked up by the Schwitzer health news blog today.

I have been somewhat disturbed by the Sunday headline article regarding highly sophisticated new drugs and how anyone can afford them when health insurance agencies are increasingly reluctant to cover the bill.

In 2007, the tab for bioengineered and "specialty" drugs was nearly $59 billion. Industry analysts predict it will reach $98 billion by 2011.

"The reality is that this is where the pharmaceutical industry is focusing their research," says Jim Carlson, Group Health Cooperative's pharmacy director.

The pharmaceutical industry long has been accused of price gouging and producing "new" drugs that aren't better than cheaper ones already on the market, and it has been criticized for its direct-to-patient advertising.

In response, the industry points to long periods of expensive research and development that often end without new products. Healthy profits attract investors to fund new research, it argues, and advertising helps patients make informed choices.

Informed choices? I don't see pharmaceutical ads as an educational tool for choice (and would question anyone who would take them as such given their inherent bias) but I digress.

Escalating cost-sharing tiers for drugs originally were developed to encourage patients to use lower-cost generics or "therapeutically equivalent" brands, noted Claxton, of the Healthcare Marketplace Project.

But, with the development of costly bioengineered drugs, insurers may have found a new use for the tier system.

When patients have no less-expensive choice, Avalere's Mendelson argues, cost tiers simply punish patients instead of encouraging thrifty, healthy behavior.

"These tiering policies don't accomplish that. They just stick it to the chronically ill."

Now for a little local history lesson about how the chronically ill were once dealt with and a compelling thought for the present and future:

Dr. Peter McGough, former president of the Washington State Medical Association, and now chief medical officer for UW Medicine's neighborhood clinics, recalls the time decades ago in Seattle when kidney-dialysis treatment was so scarce and expensive, a secret committee was formed to decide which patients got treatment — and which died.

As was true then, McGough says, these super-expensive new drugs "are pushing at the question of limited resources." Decisions can't simply be left to insurers and employers, he said, because they require a broad social policy about what's "sustainable, ethical and equitable."

I have a friend with multiple sclerosis who has tried numerous MS drugs; they do not adequately manage her symptoms. A relatively new drug for fibromyalgia does for some reason. Does her insurance cover the fibromyalgia drug? No: it only would if 729.1 appeared somewhere in her records (the ICD-9, or diagnostic code, for fibromyalgia as "Other disorders of soft tissues, Myalgia and myositis, unspecified.").

Her doctor promptly gave her that diagnostic code for the purpose of satisfying the insurance agency so her prescription would be covered by them, although she does not really have fibromyalgia.

I'm pretty sure her story is far from unique. If insurance agencies make it difficult to have physicians treat patients with the best options for their personal health without falsifying medical records or worrying about what tier the drug that works for them is on, what purpose does this serve? One case of an intentional false diagnosis may not sound like much, but it is still reported down the line and summarized in demographics and various reports regarding disease in communities. What is a true disease incidence and what is an intentional false positive? What are the ethical implications? How could this affect disease research studies?

I wish I had the answers, let alone any realistic thoughts for solutions.