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Sickle Cell Advocacy 2013 Day a Success! Next steps...

Don't miss our 41st Annual Convention's Legislative Update! This will be a panel discussion entitled, "Understanding the Climate of Congress - How It Affects Getting the SCD Treatment Act Reauthorized." Get new information about the reauthorization of the SCD Treatment Act and learn how you can be a part! Read about the success of this year's Advocacy Day event below and download our the Advocacy Day briefing booklet and talking points.



Tuesday - June 25, 2013
This year’s National Sickle Cell Advocacy Day activities attracted families and community-based leaders from all over the country. It opened on Tuesday at the Hilton Mark Center Hotel in Alexandria, VA with a private leadership council partnership meeting. The event also featured an advocacy training session sponsored by Pfizer, Inc. and directed by lobbyist Waldo McMillan of Capstone Counsel Group later that evening. The session allowed all who registered to gain insight on best practices when advocating to legislators about sickle cell disease. A role-play activity was conducted at the end of the training to give advocates the opportunity to prepare themselves for meetings with legislators on Capitol Hill. SCDAA would like to express sincere gratitude to Pfizer, Inc. for their sponsorship of this trainting!

Wednesday – June 26, 2013
Advocates re-convened at the Rayburn House Building in Washington, D.C. on the 26th with an opening congressional welcome by key champions. Congressional guests included Congressman Danny K. Davis, Congressman James E. Clyburn, Congressman Emanuel Cleaver, II and Congressman Chaka Fattah to name a few. These guests provided inspiration for advocates as they prepared to meet with legislative offices about the reauthorization of the Treatment Act. Following the opening session, over 100 advocates set off to meet with their representatives.

In addition to the opening session and hill visits, SCDAA hosted a Capitol Hill luncheon titled “It’s A New Day - Understanding the Climate of Congress and How It Affects Advocacy.”  Panel speakers for this event included Bridget Walsh of Pfizer, Inc., Marcus S. Mason of the Madison Group and Caleb Gilchrist from the Office of Congressman Danny K. Davis. Finally, the day concluded with a collaborative meeting between SCDAA and key federal agency representatives where discussion centered primarily on updates regarding sickle cell disease programs and funding.  Presenters for this event included:  Lisa Richardson, MD of Centers for Disease Control and Prevention (CDC), Keith Hoots, MD of the National Heart Lung and Blood Institute (NHLBI) and Donnell Ivy, MD, MPH of Health Resource Services and Administration (HRSA).  The collaborative was moderated by SCDAA’s very own Chief Medical Officer – Kim Smith-Whitley, MD.

Next steps…
While National Sickle Cell Advocacy Day allowed participants to express the needs and concerns of the sickle cell community and began to gain support of co-sponsors of the new Treatment Act, there is still much work to be done.

Getting the new and improved Treatment Act passed will certainly be a challenge. This challenge, however, is one that we will overcome!  The passage of this bill is absolutely imperative to future sickle cell programming and federal dollars. 

Presently the Treatment Act draft has been completed – thanks to Congressman Danny K. Davis’ office!  Our next step is to have the bill immediately introduced by Congressman Davis (IL) and Congressman Bill Young (FL). Once the bill is introduced, consistent actions will need to be taken to obtain congressional support.  SCDAA will launch a phase II campaign to help achieve this goal!  Please stay tuned for more detailed information on this plan within the next few weeks. 
In the meantime here are some actions you can take:

1. Set up personal meetings with your representatives (while they are home) to discuss this important bill.

2. Send a personal letter via mail or fax with an original signature to your representatives.

3. Call your representatives’ Washington, DC offices to express your concerns and ask for their support.

4. Reach out to your networks (Facebook, Twitter, etc) and educate them on the bill.  Ask for their support and get them to make calls or write letters as well.

5. Sign up for our SCDAA Facebook, Twitter and newsletter sites to remain updated on this important work.  Get contacts within your networks to sign up too!

Below are links to Key Talking Points and the SCD Legislative briefing.

1) Click here to view the SCD Legislative Briefing booklet

2) Click here to view the National Advocacy Day 2013 Talking Points

We are well on our way to meeting the challenge!  Let’s all unite to support the many individuals and families affected by this disease.  We will succeed!

Sickle Cell Disease Association of America, Inc.

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