A Renewed Vision from the Sickle Cell Disease Association of America

On November 9th, 2018 Beverly Francis-Gibson, President & CEO of the Sickle Cell Disease Association of America (SCDAA), spoke at the 2018 Management of Sickle Cell Disease Conference in Chicago, IL hosted by the Sickle Cell Disease Association of Illinois. She provided an overview of current SCDAA National Initiatives.

The SCDAA coordinates advocacy initiatives at the national level to increase support for those living with this inherited condition. Baltimore, MD is the site of the central headquarters which facilitates activities of over 40-member organizations across the United States. These groups are diverse and contribute to the lives of local affected families in the following ways:

  • Facilitating patient interface with health care professionals and facilities
  • Connecting patients with various forms of community support
  • Advocacy in legislative matters
  • Representing patients in projects that advance medical and pharmaceutical developments.

Francis-Gibson heads this organization and participates actively in initiatives across the country. Efforts and activities of the SCDAA fall into four categories:

  • Raising awareness of the disease and trait to enable better support for patients through all of life’s circumstances.
  • Building member organizations’ capacities to advocate on behalf of patients around health services in their local communities.
  • Lobbying Congress, state legislatures, key policymakers and organizations to promote progress in addressing the needs of people affected by SCD.
  • Partnering with organizations and agencies to advance clinical trial participation as well as safe and ethical development of new treatment options and models of healthcare delivery. These partnerships enable SCDAA to promote SCD awareness to a broader audience and connect clinical and pharmaceutical organizations with community organizations for mutual benefit. The organization thereby addresses disparities in the lived experiences of people with sickle cell disease in the workplace, academic settings, the medical arena, and other facets of society. Ongoing partnership projects include:
    • Get Connected Patient Powered Registry: As of November 2018, the Get Connected patient powered registry had 6,191 participants. The purpose of the registry is to establish a network of children, adults and families living with SCD and to store medical information.  More information can be found here.
    • Newborn Screening Program: Through Health Resources & Services Administration (HRSA) funding, the SCDAA enables local CBOs to support the identification of newborns with SCD as well as connecting parents to educational and care programs.

SCDAA is also the driving force behind a national effort to increase knowledge of sickle cell disease among the public. Leveraging partnerships with media outlets and celebrity endorsements, their efforts to educate include events, printed material, and online content. Current Public Awareness Campaigns include:

  • Novartis Generation S: Novartis has partnered with SCDAA to update the narrative of people living with sickle cell disease in the United States. Their Joint Generation S project aims to collect stories that reflect the diversity of the sickle cell community.
  • Ebony magazine: A multimedia campaign announced in 2018 will promote awareness of sickle cell disease and sickle cell trait nationwide. Digital content, magazine features, and speaking events are planned that will shine a spotlight on how we all can support those affected.
  • Blackdoctor.org: Sickle Cell Disease is a featured condition on this informative website popular among medical professionals of color. Find coverage of SCDAA events, information on breakthroughs in research and treatment, and timely tips on managing the condition on their website.

Francis-Gibson ended her presentation stating that successful efforts at the national level require unity. Her organization, the Sickle Cell Disease Association of America, works to establish unity among its member organizations, as well as through strategic partnerships. The areas of society impacted by unmet needs for sickle cell patients are varied and bringing our diverse talents together will ensure progress.

Take the next step

Below the author has compiled ideas to help you give back and get involved in your own community. Find ways to contribute to a local organization that serves sickle cell patients in your area. The dedicated volunteers of these nonprofit organizations welcome your help to provide vital community and health services.

  • Current students can gain volunteer hours to strengthen college applications or fulfill community service requirements.
  • Donate your skills to help local organizations
    • Provide administrative assistance or help with social media
    • Legal professionals can offer their services or point out local resources for free business-related legal assistance
    • Work with your employer to arrange opportunities for children with SCD to gain exposure to your career
  • Donate toys to local SCDAA chapters during the holidays and personal essential items after severe weather events
  • Talk to your employer about organizing a community development project in partnership with your local SCDAA chapter. Both sides would benefit through team building and neighborhood improvement.
  • Participate in community events like sickle cell walks, picnics, health fairs, and the annual educational meetings organized by SCDAA and their CBO member organizations. It’s a great way to connect with other people who want to see positive change and to learn about new developments in improving quality of life with this disease.
  • Use employer matching programs to increase your donation to a nonprofit organization that serves affected children and adults.

Raise your voice at the local, state, and national political levels to advocate for sickle cell patients.  Get involved with the legislative process to help make new laws that dedicate research funding and other forms of support to this cause.

  • Find Advocacy Day events in the capital city of your home state. Also consider visiting Capitol Hill in Washington DC to share your perspectives with lawmakers. Each year, organizations independently coordinate day-long or multi-day events that you can participate in. Check out the events organized by the SCDAA or the EveryLife Foundation.

Disclaimer: As of this writing, Micromattie Consulting Inc. is not affiliated with the Sickle Cell Disease Association of America.

This blog article was sponsored by Global Blood Therapeutics Inc. GBT Logo Small , the views expressed by the author are her own.

 

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