NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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Contact Your Representative
House Letter
Dear Representative [Last Name]:
I am one of your constituents and I am affected by a rare disease. I want to
thank Congress for its efforts to reform our healthcare system so that there
will be adequate, affordable healthcare for all Americans. I strongly support
the health insurance reforms included in H.R. 3200, especially the elimination
of lifetime limits on benefits. However, I am concerned about the delay in
eliminating lifetime caps in existing plans, and urge you to implement this
crucial provision as soon as possible.
Many private insurers continue to set lifetime caps on health coverage at $2 to
$3 million. Because medical care and treatments for rare diseases can be very
expensive, people with rare diseases could exhaust their benefits in as few as
five years. People are forced to make difficult decisions about their health,
jobs, residences and even family life to secure new coverage. Eliminating
lifetime limits would not only help families like mine who face high medical
costs, but would also result in savings for state and federal governments.
Independent analysis by PricewaterhouseCoopers found that more than $11 billion
over 10 years would be saved by raising lifetime caps, since people could
maintain their private insurance rather than be forced onto Medicaid.
H.R. 3200 eliminates lifetime caps in plans offered through the Exchange or
through new employer-based plans as of 2013. Existing group plans are exempt
from this requirement until 2018. So, families like mine could be subject to
lifetime limits for an additional nine years. This is simply too long.
Please contact Speaker Pelosi to ask that the elimination of lifetime caps be
implemented in all plans in the next plan year after the law is enacted. This is
similar to how H.R. 3200 currently prohibits insurance policy rescissions. Both
rescissions and lifetime caps are insurance company practices that penalize
people who submit high-cost claims and both result in a person with a serious
medical condition losing insurance coverage. In both cases, people are forced to
make difficult decisions about their jobs, residences and even family life to
secure new coverage.
President Obama has included the elimination of lifetime caps in his core reform
principles. In his address to Congress, President Obama promised that as soon as
he signs a bill, insurance companies “will no longer be able to place some
arbitrary cap on the amount of coverage you can receive in a given year or a
lifetime." This isn't true as H.R. 3200 is currently drafted. I ask for your
leadership to see that this important reform is implemented as soon as possible.
Families like mine cannot wait for lifetime caps to be eliminated.
Thank you for your consideration.
Sincerely,
[Your signature]
[Your full name and address]
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