NORD's
Washington Office
 Check here to 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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But Time is Running Out....
Call your U.S. Senators and Representative Today at
U.S. Capitol Switchboard: (202) 224-3121
As Congress moves into what could be
the final days of drafting health reform legislation, there is still time to
make your feelings known on the lifetime and annual insurance caps issue. Many
of you already have but if you have not yet done so, please call your
Congressional representatives now and let them know that:
- You represent a rare disease patient
organization
- The issue of lifetime/annual caps is
very important to your members
- You are calling to ask that all
lifetime and annual caps be eliminated
- The Senate bill won’t do this and,
therefore, you want your Congressional representatives to support the
provisions from the House bill on this issue with one exception—the final
legislation should also incorporate a Senate provision restricting annual caps
until the caps are fully eliminated
NORD's press release (below), signed by
many of our Member Organizations, has been widely circulated on Capitol Hill, to
the White House, and to the media. It was picked up by Reuters and other major
news sources. In addition, NORD's Washington Office has received calls from
legislative staff members who read the release and are interested in this
issue.
Patient Advocates Cite Insurance
Caps As Critical Difference in Senate and House Health Care Reform
Advocacy groups warn that Senate
version of bill would not eliminate caps for millions of Americans
Washington, DC. - The National
Organization for Rare Disorders and 45 other patient advocacy groups are warning
that the Senate health care reform bill would not eliminate annual and lifetime
insurance caps for many Americans, contrary to common belief. The groups say
millions of people would still be vulnerable to loss of their insurance benefits
if provisions from the Senate bill are adopted in the final legislation.
"This is a critical issue for patients
with rare diseases, as it should be for all patients," said Peter L. Saltonstall,
NORD's president and CEO. "As the House and Senate negotiate health care
reform, we must keep in mind the central focus, to create medical security.
Capping insurance payments, either on an annual or lifetime basis, can lead to
substantial limits on medical care for patients."
Saltonstall said NORD often hears from
patients who are worried about being unable to afford their treatment or
impoverishing their families if they should lose health benefits as a result of
reaching a cap. For instance:
- A 24-year-old man with hemophilia
anticipates that his lifetime medical benefits will be exhausted in about
three years.
- The family of a 9-year-old child
diagnosed with aplastic anemia at age 4 worries that he could exhaust his
benefits very early in his life.
- Parents of a high school student
stricken with life-threatening illness at age 16 worry about losing his
insurance coverage, which has a $1 million lifetime cap.
NORD was one of 63 patient advocacy
groups that sent a letter this week to Senate Majority Leader Harry Reid (D-NV)
and House Speaker Nancy Pelosi (D-CA) urging elimination of all annual and
lifetime insurance caps. Advocacy groups also sent a letter to President Obama.
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 relatively quickly by people with
rare, chronic, or catastrophic diseases.
The patient advocates are urging that
Congress adopt the House provisions on lifetime limits, which would eliminate
such limits in all private insurance plans in 2010. This is in stark contrast
to the Senate version of health reform, which would allow lifetime limits to
continue indefinitely on existing plans.
Regarding annual limits, the groups
urge adoption of the House provisions with one exception—that the final
legislation incorporate a Senate provision restricting annual caps until the
caps are fully eliminated in 2013 for new plans and 2018 for existing plans.
Advocacy groups joining NORD in urging
Congressional leaders to adopt the House provisions on this issue include:
Acid Maltase Deficiency Association
Advocacy for Patients with Chronic Illness, Inc.
Alpha-1 Association
Alpha-1 Foundation
American Behcet's Disease Asssociation
American Autoimmune & Related Diseases Association
APBD Research Foundation
Amyloidosis Support Groups
Aplastic Anemia & MDS International Foundation
Cicatricial Alopecia Research Foundation
COPD Foundation
Cystinosis Research Network
Dystrophic Epidermolysis Bullosa Research Association of America
Ehlers Danlos National Foundation
GBS/CIDP Foundation International
Hannah's Hope for Giant Axonal Neuropathy
Hemophilia Federation of America
Hereditary Neuropathy Foundation
Histiocytosis Association
Immune Deficiency Foundation
Kennedy's Disease Association
Lymphangiomatosis Foundation
MHE Research Foundation
Moebius Syndrome Foundation
National Ataxia Foundation
National Gaucher Foundation
National Hemophilia Foundation
National Marfan Foundation
National MPS Society
National Multiple Sclerosis Society
National Tay-Sachs & Allied Diseases
National Urea Cycle Disorders Foundation
Organic Acidemia Association
Osteogenesis Imperfecta Foundation
Paget Foundation for Paget's Disease of Bone and Related Disorders
PNH Research and Support Foundation
Reflex Sympathetic Dystrophy Syndrome Association
Sarcoma Foundation of America
Scleroderma Foundation
Shwachman-Diamond Syndrome Foundation
Stevens Johnson Syndrome Foundation
The Myositis Association
Tourette Syndrome Association
United Leukodystrophy Foundation
Vasculitis Foundation
Wilson's Disease Association
CONTACT:
Diane Dorman
ddorman@rarediseases.org
202 588-5700 (office)
202 258-6457 (mobile)
Mary Dunkle
mdunkle@rarediseases.org
203 744-0100 (office)
203 482-9934 (mobile)
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