Monday, December 1, 2008


Over here --------------------------------------------------->
is a nifty little icon about insurance caps. Specifically, the push to have congress enact legislation requiring health insurers to raise lifetime insurance caps.

What has happened is that as health care costs have risen exponentially, insurance caps have not. I would venture a guess that the vast majority of individuals who have insurance have no idea what their lifetime cap is. Many HMOs, PPOs, and QCPs don't have a cap at all. But this can change. Our original policy up in Oshkosh had no cap. Because of changes, a cap of $2,000,000 was implemented. Of course, this seems like a lotta dough. Unfortunately, it's not. And most won't know it's not enough until it's too late.

This is not a bleeding disorders issue, but the bleeding disorders community has been very active in pursuing legislation to assist individuals affected by the issue.

What is unique about the chronic disease community is that we must live with this issue throughout out lives. Many others become ill, receive treatment/hospitalization, get better and then are left paying the bills. Not so for us. Not only do my husband and I always have this on our minds, our boys will have to deal with the issue. We do not have the ability to declare bankruptcy and start from kids will always have these bills.

Insurance caps do not change based on increases in inflation, cost of living or new and expensive therapies. In fact, it's quite common for an insurance company to sort of 'encourage' consumers to cap-out on a policy so that the individual is no longer on a policy.

Here's an article about a family who learned about the issue all too quickly.

When our own insurance company implemented a cap, my husband went to his employer's benefit fair and asked the specialists what would be offered for those who hit their cap. The reps said "Oh, gosh, that doesn't happen. You know it's $2M, right?" He chuckled and walked away. $2M seems like a nice chunk of change. Ultimately, we chose to move back to Illinois because we knew that we'd hit that cap when the boys were in high school and then what? Illinois has a much better safety net for those in the high risk category; additionally, our current plan has no lifetime cap.

Of course, the bigger issue is that health care costs are out of whack. Many of the drugs used to treat chronic, rare disorders have "orphan drug" status. This means that the condition effects so few individuals that developing new drugs isn't very lucrative. Therefore, to encourage research and development of these very specialized drugs, the FDA has special regulations. Essentially, the companies that develop these drugs are given tax reductions and marketing exclusivity so that they will continue the research.

The Orphan Drug Act (ODA) has been instrumental in the development of new and innovative therapies, but it's a double edged sword. These companies have a monopoly on their therapies and are able to set prices for said therapies quite high. A Catch-22.

So, what's a family like mine to do? We have to have these drugs...they keep my kids alive. The average life expectancy of a person with hemophilia prior to the development of these drugs was somewhere in the mid-twenties. Now it's virtually the same as non-hemos. But the cost of the drugs is outrageous. I don't begrudge Pharma for wanting to profit on an otherwise relatively unprofitable therapy, but something has to give.

Our current system is not adequately meeting the needs of individuals living with a chronic illness or those who face a catastrophic illness. In the end, by not raising insurance caps, everyone suffers.

I encourage everyone to pull out their certificates of coverage and find out what your lifetime cap is. If you can't find it in the literature that you've been provided by your insurance company, call 'em and ask 'em!

For those of you who don't HAVE insurance, this kind of reform is a step towards getting adequate coverage for all.

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