Sickle Cell Disease Community Initiatives

 

During the week of October 12th, I attended the 48th Annual National Convention hosted by the Sickle Cell Disease Association of America (SCDAA). Sanguine was a sponsor of the convention. While the conference was initially scheduled to be in Florida, it was made a virtual event because of the pandemic. Attendees were able to attend live lectures or watch recordings, ask presenters questions, connect with other attendees via a chat feature, and learn about exhibitors through virtual booths. While I attended many presentations, one of the most uplifting and exciting presentations was “Community Based Organization Highlights.”

During “Community Based Organization Highlights” we learned about a sickle cell mobile application called cscf: Living with Sickle Cell developed by the Children’s Sickle Cell Foundation. Their goal is to develop “a health-management mobile application that is easy to use, with key trackers and lots of resources.” The app allows for daily mood, hydration, and pain updates; reminders; and medication tracking. The app is free to use and was designed to help those with SCD live better. The app is in still development and testing and will go live soon!

Another community based highlight is the founding of the Dream Sickle Cell Kids Foundation in Nevada in 2018. The organization was founded by Georgene Glass who is a mother of a 5 year old with SCD. The foundation created the movement #makesicklecellpopular and hosted a holiday event with over 300 attendees. One of the foundation’s major initiatives was to support a bill in Nevada that requires hospitals to keep track of SCD patients, allows for medication to be compounded for children, and requires insurance companies to cover new SCD medications. Dream Sickle Cell Kids Foundation aims to increase awareness about SCD and provide support to the patient community. 

SAFER is a community based Emergency Room initiative. SAFER was developed to improve care for patients with SCD that come to the ER during crises. According to Stephanie Worth, Director of Outreach and Operations for SCDAA, “only 1 in 4 SCD patients receive the standard of care described in current hospital guidelines.” Moreover, many ER physicians are not even aware that guidelines exist for acute sickle cell treatment. When Stephanie’s own 23 year old son went into crisis and rushed to an ER in a small town near Detroit, he wasn’t treated properly. His hemoglobin was at a 4, temperature was at 103 degrees, and he was only given one round of Dilaudid. The hospital discharged him and he eventually had to be taken to a different hospital. SAFER was developed for instances like these- SAFER is a wallet card designed to help physicians learn about guidelines in a “non-confrontational” way, increase patient access to care, and eliminate health disparities that exist in the ER around SCD. SAFER has gained credibility with the NIH and complies with CDC guidelines. The next step in the implementation of this tool is to measure its effectiveness through patient feedback. 

While sickle cell is a challenging disease, it is uplifting to learn about how communities are taking initiatives to help improve the lives of those with SCD. This was a very insightful presentation hosted by SCDAA.