NHF marks Bleeding Disorders Awareness Month and its 70th anniversary on March 8 with advocacy event on Capitol Hill
NEW YORK, March 8, 2018 /PRNewswire/ -- Sixty percent of the nation’s adults--or 150 million Americans--live with at least one chronic condition like heart disease, arthritis or hemophilia. And while their chronic diseases may differ, what these Americans share is the need to access quality healthcare through health insurance with no annual or lifetime limits on benefits, irrespective of their pre-existing medical conditions. But with some Members of Congress continuing their campaigns to eliminate patient protections provided by the Affordable Care Act of 2010 (ACA), the National Hemophilia Foundation--NHF--today launches its own campaign: the 2018 Red Tie Campaign.
NHF’s Red Tie Campaign aims to help galvanize a bipartisan Congressional majority to act decisively to protect access to affordable, quality healthcare for people with bleeding disorders and all chronic conditions. Bleeding disorders--such as hemophilia, von Willebrand disease, and rare factor disorders--prevent the blood from clotting normally; can result in extended bleeding after injury, surgery or trauma; and can be fatal if not treated effectively.
“NHF has been the bleeding disorders community’s chief advocate since its founding in 1948 and since we’ve never shied away from a fight, we’ve been at the forefront of every major public policy effort over the past 70 years,” said Val Bias, NHF CEO. “But if there’s ever been a time to unite for bleeding disorders and other chronic diseases, it’s now and it’s through our movement, the Red Tie Campaign at www.RedTieCampaign.org.”
NHF issues its call-to-action to Congress on March 8
NHF and over 500 members of the bleeding disorders community from more than 45 states and the District of Columbia formally launch the 2018 Red Tie Campaign--and kick-off the observance of NHF’s 70th anniversary--on Capitol Hill on March 8 during meetings with nearly 300 Members of Congress and their staffs. The community’s advocacy focuses on maintaining the retention of hard-won patient protections provided under the ACA that are vital for people with bleeding disorders and with all rare, chronic and expensive conditions, including:
- Continuing the prohibition on annual and lifetime dollar limits on essential health benefits (EHBs), such as doctors’ services and prescription drug coverage;
- Ensuring that federal standards for the essential health benefits and other protections established by the ACA are maintained so that access to care won’t vary dramatically from state-to-state; and
- Continuing the requirement that plans offer coverage to individuals with pre-existing conditions without charging them more based on their health status.
The bleeding disorders community is also asking Congress to continue federal programs that support the national network of 135 Hemophilia Treatment Centers. These specialized healthcare centers provide expert, multidisciplinary care to individuals with bleeding disorders.
How America’s 150 million-strong chronic disease community can engage
Members of the bleeding disorders community and all Americans living with chronic diseases are invited to participate in the Red Tie Campaign by visiting the campaign hub, www.RedTieCampaign.org, to:
- Donate to support NHF’s: funding of promising research into better treatments and cures; advocacy to preserve and expand access to affordable, effective healthcare; and provision of essential education to individuals with bleeding disorders and healthcare professionals;
- Sign the letter of support reinforcing the continuation and strengthening of ACA healthcare protections; and
- Get creative in showing your best red-tie-style using NHF’s virtual photo booth and sharing your photo via Twitter, Facebook and Instagram using #RedTieCampaign.
“When you visit www.RedTieCampaign.org and make a donation, sign our letter of support, and show us how fashion-forward you can be in wearing our symbol, the red tie, you’ll help NHF ensure that people with bleeding disorders live happy, healthy and productive lives,” said Bias. “On behalf of our three-million-member community, I thank you for your support.”
About the “red tie” and acknowledging Red Tie Campaign sponsors
In 2016, NHF worked with the U.S. Department of Health and Human Services to designate as an official U.S. health observance the month of March as Bleeding Disorders Awareness Month. At that time, NHF also introduced the red tie as the community’s symbol, reflecting the fact that blood ties--embodied in the color red and the tie--are what bind the community together.
NHF wishes to thank the sponsors of the 2018 Red Tie Campaign, including the bleeding disorders community, our 52-chapter network, and the following companies and organizations: Alnylam; Bayer; CSL Behring; CVS Specialty Pharmacy; Genentech; Grifols; The Hemophilia Alliance; Novo Nordisk; Pfizer; and Shire. Learn more at www.RedTieCampaign.org.
About bleeding disorders
More than three million Americans have either hemophilia, von Willebrand disease or rare factor deficiencies, all of which: prevent the blood from clotting normally; can result in extended bleeding after injury, surgery or trauma; and can be fatal if not treated effectively. Learn more at www.hemophilia.org/.
2018 marks NHF’s 70th anniversary
NHF (the National Hemophilia Foundation) is a 501(c)(3) nonprofit organization that is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NHF has 52 chapters throughout the United States. Additional information on NHF and bleeding disorders can be found at www.hemophilia.org/. To locate an NHF chapter near you, visit https://www.hemophilia.org/Community-Resources/Chapter-Directory.
Contact:
Brett Spitale, Tel. 646-784-0368
Email: bspitale@hemophilia.org
Beth Marshall, Tel. 646-530-3598
Email: bmarshall@hemophilia.org
Editor’s Note: NHF’s Michelle Rice (SVP, External Affairs) and Brett Spitale (VP, Advancement) are available to provide additional insight. For information and/or to schedule an interview, please contact Brett Spitale at 646-784-0368 or bspitale@hemophilia.org.
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SOURCE National Hemophilia Foundation