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 Senator
Dear Senator [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 the health reform proposals, especially
the elimination of lifetime limits on benefits. However, I am concerned about
the delay in eliminating lifetime caps in new plans in the Finance Committee's
bill and that existing plans are exempted altogether. I urge you to eliminate
lifetime caps in all plans as soon as possible. My family can't wait.
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.
I seek your support for the Senate HELP Committee bill provision, which
eliminates lifetime caps in the next plan year for all plans. The Senate Finance
Committee's bill would phase-in the elimination of caps in the individual and
small group markets, and would only preclude group health plans from imposing
"unreasonable" lifetime limits. Unfortunately, families like mine could remain
subject to lifetime limits under the Finance Committee's proposal.
I am concerned that both bills would exempt existing plans and their renewals
indefinitely from the requirement to eliminate caps. Please support an amendment
to apply the elimination of caps to existing plans. Many people with rare
diseases, who are currently insured, face lifetime caps. Without their
elimination, these caps will be met and individuals will be forced onto public
programs.
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 the Senate health reform bills are currently
drafted. I urge you to support amendments to health reform to make it so.
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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