Prohibit Lifetime Caps

This call to action by NORD (National Organization for Rare Disorders) was forwarded by Jim Broatch of RSDSA. Normally, I wouldn't give it much thought -- I doubt if it would even register as an important issue with me until a few years ago.

However, when I was shifted from one group to another in my coverage with BCBS, the company and I went back and forth, and then, round and round, over the issue of lifetime coverage. The two handbooks they sent me clearly said I was capped at $5 million. BCBS claimed that I had received -- not one, but TWO booklets that somehow contained misprints, since the true cap was $2 million.

And now... it doesn't matter at all, because they proceeded to price me out of coverage -- oh, when was it? I remember! October 1, 2009, two short weeks ago.

In case you think that $2 million was generous on the part of BCBS, think about this: in 10 months -- from August 2008 to June 2009 -- I incurred $500,000 in medical expenses. Granted, that was an unusually crappy time. But, the point is that it happens.

So give this a read, and please consider acting on the suggestions from NORD:


Please Help Us Educate Members of Congress About Lifetime Insurance Caps!
National Organization for Rare Disorders


While NORD has been excited to see the elimination of lifetime caps included in each health reform proposal currently being considered by Congress, the old adage "the devil is in the details" still rings true. Although all of the bills eliminate lifetime caps, in some proposals the provision will be delayed and in others there is no requirement for existing plans. We need you to write your members of Congress to ask for lifetime caps to be prohibited immediately.

The way the bills are currently drafted would result in many people potentially facing lifetime caps, even after health reform is enacted. Individuals with employer-sponsored insurance could face caps until 2018 or possibly indefinitely if their insurance coverage does not change. This is unacceptable. NORD has been advocating for the immediate elimination of lifetime caps in both new and existing plans in all insurance markets.

Congressional leaders are currently working to combine the various health reform bills into House and Senate versions before they can be voted on by each chamber. Now is the time for everyone who wants lifetime caps to be eliminated to contact Congress.

Please e-mail your members of Congress TODAY to ask that lifetime caps be eliminated immediately. Sample letters have been provided (see below) that you can personalize with information about how your family or your members are affected by insurance problems, the annual cost of care and, especially, lifetime caps. If you have hit a lifetime cap, please be sure to include that as well.

To find the e-mail addresses of your Senators and Representative go to:

U.S. House of Representatives
U.S. Senate

Sample Senate Letter

Sample House of Representatives Letter

Thank you for your continued support. In this climate of change, it's VERY important for all of us in the rare disease community to make our voices heard on issues related to health reform.


This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.