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
GBS/CIDP Foundation International
Hemophilia Federation of America
Hereditary Angioedema Association
Immune Deficiency Foundation
Little Miss Hannah Foundation
The Mastocytosis Society
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
Jim Backlin, Christian Coalition of America
Ryan Ellis, Americans for Tax Reform
Colin Hanna, Let Freedom Ring
Ken Hoagland, Restore America’s Voice Foundation
Dee Hodges, Maryland Taxpayers Association
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