More than 60 groups representing individuals with chronic conditions, orphan diseases, and other medical conditions—including the National Organization for Rare Disorders, the Hemophilia Federation of America, and the National Multiple Sclerosis Society—wrote in a letter to Congress that the Senate healthcare reform bill does not really eliminate annual and lifetime insurance caps. The groups are supporting adoption of the House bill instead because the legislation would eliminate caps.
A provision under Title I of the Senate bill actually does call for eliminating annual and lifetime caps from insurers' policies. However, further down in the bill is a separate section that grandfathers in existing plans—preserving the right to maintain existing coverage, according to the patient groups.
This means that insurers would not be required to eliminate provisions, such as annual and lifetime caps, under current policies, says Diane Dorman, vice president of public policy for the National Organization for Rare Disorders in Washington, DC. "People are missing that because it's in different sections of the title [of the bill]. That's a really big problem at this point."
Currently, many private insurance plans include annual or lifetime caps. Typical lifetime caps are in the range of $1 million or $2 million—a figure that can be reached quickly by people with rare or chronic diseases, Dorman says.
The groups are requesting that the bill include the House language on lifetime limits, which eventually would delete lifetime limits in all private insurance plans beginning in 2010. This language is preferable to the Senate language, the groups say, where individuals—who might not have immediate access to the insurance exchanges in their states proposed under reform legislation—could face lifetime caps for several years or even indefinitely.
For annual limits, the groups called for the inclusion of the House language, which would eliminate annual caps on new plans in 2013 and in existing plans in 2018, with one modification—incorporating the Senate provision that before 2013 restricts annual limits in plans to a "restricted annual limit" as determined by the Secretary of Health and Human Services. These interim restrictions to the House annual limits provision would provide individuals with high medical costs with immediate relief from inadequate annual limits.
"This is a critical issue for people with rare diseases. Their care can be very expensive—to prolong life, to improve their quality of life," says Dorman. "We were really concerned that a lot of times, these patients reach their caps very quickly, and then they had to find [another] job, or to find other insurance. So it can be a really difficult situation—on top of the difficult situation to live with on a daily basis."