The National Hemophilia Foundation (NHF) kicked off its 70th anniversary with an advocacy effort on Capitol Hill in Washington, D.C. At the same time, the NHF launched its 2018 Red Tie Campaign to raise awareness about Bleeding Disorders Awareness Month and reinforces its campaign to oppose the U.S. Congress’ efforts to terminate patient benefits provided under the Affordable Care Act of 2010.
The campaign was designed to spotlight the needs of those living with bleeding conditions like hemophilia. Specifically, advocates call for increased access to quality healthcare through health insurance with no annual or lifetime limits on benefits, irrespective of pre-existing medical conditions.
On March 8, NHF and more than 500 members of the bleeding disorders community from across the U.S. met with nearly 300 members of Congress and their staffs. Following these meetings, the community’s efforts led to the creation of the 2018 Red Tie Campaign to facilitate a bipartisan Congressional majority to protect those living with bleeding disorders.
Retaining the hard-won patient protective benefits given under the ACA is critical to meet the needs of the bleeding disorders community, according to a press release. To achieve this the NHF supports:
- Preserving annual and lifetime dollar limits on essential health benefits (like doctors’ services and prescription drug coverage);
- Keeping federal standards for the essential health benefits and other protections given by the ACA;
- Ensuring access that is not drastically different from state-to-state, and;
- The requirement that plans give coverage to people with pre-existing medical conditions without increasing their payments according to their health condition.
Advocates also are asking Congress to maintain federal programs that offer support to the national network of 135 Hemophilia Treatment Centers, which provide specialized care to all members of the bleeding disorders community.
Here is how they suggest the public may engage with the campaign:
- Donate and support NHF’s funding of promising research, advocacy efforts, and essential educational services for patients and professionals;
- Sign the letter of support, backing-up ACA healthcare protections;
- Feel free to have fun using creative ways to show red-tie-style using NHF’s virtual photo booth and sharing photos using the hashtag #RedTieCampaign.
The red tie was introduced as the bleeding disorders community’s symbol in 2016, when NHF and the U.S. Department of Health and Human Services worked together to designate March as an official U.S. health observance month. The red tie reflects the fact the blood ties — embodied in the color red and the tie — are what bind the community together.
The 2018 Red Tie Campaign has support from several bleeding disorders organizations and industry sponsors, including The Hemophilia Alliance, Alnylam, Bayer, CSL Behring, CVS Specialty Pharmacy, Genentech, Grifols, Novo Nordisk, Pfizer, and Shire.