The scene at Washington Days, the National Hemophilia Foundation’s (NHF) annual advocacy event, is characterized by a sense of excitement and exhilaration. Volunteer advocates from the bleeding disorders community convene on Capitol Hill to meet with their legislators to discuss issues relating to the bleeding disorders community.
But this year, something was a little different: everyone was seeing red. Advocates got creative in wearing red ties as a symbol of solidarity.
The red ties were to promote an awareness campaign for the newly designated Bleeding Disorders Awareness Month. NHF worked with the US Department of Health and Human Services to have March officially listed as Bleeding Disorders Awareness Month. This year marks the 30th anniversary of President Ronald Reagan’s designation of March 1986 as Hemophilia Awareness Month. The decision to work to recognize March as Bleeding Disorders Awareness Month was based on a desire to more accurately reflect the wider bleeding disorders community.
The approximately 350 volunteer advocates who came to Washington, DC, on Feb. 24–26 were briefed on three issues they would be discussing with their legislators. The first was recognition of Bleeding Disorders Awareness Month by the representative. The official was asked to make a one-minute floor speech in recognition of the month, or post a photo and a statement of support on social media channels while wearing a red tie and using the hashtag #Red
TieChallenge. The second was keeping federal funding stable for federal hemophilia programs. The last was a request to co-sign H.R. 3742, the Access to Marketplace Insurance Act, which would prevent marketplace insurance plans from not accepting premium assistance from third party, nonprofit patient assistance programs. The bill was introduced by Representative Kevin Cramer (R-ND). Currently, there is no companion bill in the Senate.
Two training sessions were held for the volunteer advocates: a Washington Days training, which covered all three issues in detail, and a social media training for attendees. Because part of the request was for support for the Red Tie Challenge on social media, attendees were given their legislators’ Twitter and Instagram handles ahead of time. They were encouraged to engage with their representatives via those social media platforms.
As a result of the meetings, four representatives co-signed H.R. 3742. Approximately 24 legislators posted statements of support for the first Bleeding Disorders Awareness Month via their social media channels. Representatives Dan Benishek (R-MI), Billy Long (R-MD) and John Carney (D-RI) gave a one-minute floor speeches to the House of Representatives in recognition of the month. Representative David Scott (R-GA) also submitted a floor speech on March 3 in support of the month.
“This is the first time we’ve had an awareness campaign as part of our advocacy effort in Washington DC,” says Michelle Rice, NHF VP for public policy and stakeholder relations. “Our advocates were able to start the meetings with an easy and fun ask: wear this tie in support of Bleeding Disorders Awareness Month. We’re happy we got such a great response from lawmakers as a result of those meetings.”
For more information on NHF’s Red Tie Challenge: www.redtiechallenge.org.
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(Left to right) Samuel Cavas and his mom Barbara Gordon meet with Senator Sheldon Whitehouse (D-RI), who proudly shows off his red tie. |
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Kristi Harvey Simi (middle), NHF Manager of Chapter Development, and Bob Goodley of Oklahoma meet with a legislative aide from Senator James Inhofe’s (R-OK) office. |
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Lisa Maxwell gives a hearty handshake to Senator Jon Tester (D-MT) after her meeting. |
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Senator Chuck Schumer (D-NY) enjoys chatting with a couple of young volunteer advocates from New York. |
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NHF CEO Val D. Bias supports Cole Hamstead and his mother, Kim, as they present the Dr. L. Michael Kuhn Award to Senator Chris Coons (D-DE), which was accepted by legislative aide Kelsey Mellette. |
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Washington Days participants congregate outside the Russell Senate building before meeting their representatives. |
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Members of the Arizona coalition are all smiles meeting Representative Ruben Gallego (AZ-7). Rep Gallego spoke to attendees about the impact citizen advocacy can have on members of Congress. |