Rare Disease Blogs

In the U.S., the health care reform process has been extremely confusing to many people. The language in the various bills is complex. And many of the proposed changes won’t take effect for several years, even if enacted now.

NORD’s position on health care reform, from the very beginning, has been that any plan needs to include the following measures:

• Discrimination based on pre-existing conditions must be eliminated

• Annual and lifetime insurance caps must be eliminated, and patients must be protected against catastrophic out-of-pocket costs

• Insurers must not be allowed to cancel an individual’s coverage as a result of a bad diagnosis

• Reform must include tax credits and other direct financing support to assure that everyone can afford coverage

It appears, at this point, that most of these issues are being addressed—at least when reform fully kicks in some years down the road. However, the lifetime and annual caps issue still has not been resolved, and many Americans don’t realize this.

Lifetime and annual caps would be eliminated, at least in the future, under the House of Representatives health reform bill. In the Senate bill, however, which appears now to be the likelier of the two to prevail during the reconciliation process, lifetime and annual caps would not be eliminated for existing plans that currently have caps. As a result, millions of Americans would still face the prospect of losing their health coverage as a result of chronic illness or a single catastrophic illness or injury.

A PriceWaterhouseCoopers study commissioned by the National Hemophilia Foundation found that the most typical caps are $1 million or $2 million. For people with serious rare diseases, it’s not at all unlikely that such a cap might be reached relatively early in life. For instance, a 24-year-old man with hemophilia predicts, in an online video, that he will reach his lifetime cap in about three years.

This is a serious issue and all the more disturbing because many Americans don’t yet understand that lifetime and annual caps may remain a reality, even after health care reform. NORD is urging that, on this issue at least, the final legislation follow the recommendations in the House bill rather than those in the Senate bill.

Otherwise, many people may discover—when it’s too late—that they still have unrealistic limits on their medical coverage, even after a reform bill has been adopted.