Letters of Support for H.R. 1549

April 17, 2013

To read a letter signed by the rare disease patient community organizations, click here

Excerpt: The rare disease patient community greatly appreciates your leadership in offering a solution to the funding issues associated with the Preexisting Condition Insurance Plan (“PCIP”) Program and strongly supports swift passage of H.R. 1549, the Helping Sick Americans Now Act. The prohibition against preexisting condition exclusions that the Affordable Care Act (“ACA”) established is one of several vital insurance market reforms that will ensure patients with life threatening and debilitating, chronic rare diseases will have access to their treatment regimen. The PCIP program is a critically important component of the ACA market reforms because it affords those patients that currently lack insurance coverage due to these discriminatory practices an opportunity to enjoy temporary coverage until they can transition to meaningful coverage on January 1, 2014.

The following organizations signed the above letter:
 
Adult Congenital Heart Association 
Alpha-1 Association 
Alpha-1 Foundation 
CADASIL Association 
COPD Foundation 
GBS/CIDP Foundation International 
Global Genes 
Hemophilia Federation of America 
Hereditary Angioedema Association 
Immune Deficiency Foundation 
Lipodystrophy United 
Little Miss Hannah Foundation 
The Mastocytosis Society 
MLD Foundation 
National Gaucher Foundation, Inc. 
National MPS Society 
National PKU Alliance 
Noah’s Hope for LINCL-Batten Disease
Platelet Disorder Support Association 
United Leukodystrophy Foundation 
 

To read the letter signed by additional organizations listed below, click here.

 
Exceprt: We want to thank you for drafting, and offering to call up in the House, a bill that allows Members to choose between continuing to have part of the so-called Affordable Care Act fund lobbyists, activist organizations, and ad campaigns to raise taxes and restrict freedom, as it is presently doing, or redirecting some of those funds to make insurance more affordable for Americans with pre-existing conditions, while reducing overall spending. That’s the decision the House will face when it considers your H.R. 1549, the Helping Sick Americans Now Act. It should be an easy choice.
 
Independent Women’s Voice
American Commitment
Freedom Works
Jim Backlin, Christian Coalition of America
Jim Capretta
Ryan Ellis, Americans for Tax Reform
Colin Hanna, Let Freedom Ring
Ken Hoagland, Restore America’s Voice Foundation
Dee Hodges, Maryland Taxpayers Association
Randy Kendrick
Jim Martin, 60 Plus
Seton Motley, Less Government
C. Preston Noell III, Tradition, Family, Property, Inc.
Judson Phillips, Tea Party Nation
Amy Ridenour, National Center for Public Policy Research
Pete Sepp, National Taxpayers Union
Alex St. James, Republican National Policy Committee
Grace-Marie Turner, co-author, Why ObamaCare is Wrong for America
Wes Vernon, columnist
Richard Viguerie, ConservativeHQ.com
Daniel Weber, Association of Mature American Citizens

 

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