Thankful for the oneSCDvoice Working Groups
I first remember learning about sickle cell disease in high school biology in the chapters on blood cells. I recall the lesson on the sickle-shaped red blood cells being sticky and not being able to flow through the body, but I had no idea what this meant to people who live with or care for someone with sickle cell disease.
I came to work for rareLife solutions in July of 2017 while oneSCDvoice was in development. The potential members of the Working Groups were being identified at this stage and so began my introduction to the vibrant sickle cell community.
As the Working Groups came together and began to review the progress and provide feedback on the oneSCDvoice platform in its infant stage, I started to gain more of an understanding of what it means to live with sickle cell disease. The Working Groups are made up of advocates of the sickle cell disease community who have sickle cell disease or care for someone with sickle disease or treat sickle cell disease. Each Working Group member has a unique point of view and expertise in sickle cell disease developed through their unique life experiences. Their expertise, passion, and unique perspectives helped to shape the oneSCDvoice platform and they continue to inject new life and ideas into the platform and grow the oneSCDvoice community.
There are times when the Working Group members are meeting with us from 8pm–10pm to accommodate their busy schedules. Sometimes they are calling us with feedback from their hospital rooms during a pain crisis. One of our Working Group members, Shakir Cannon, passed away a few days before the launch of oneSCDvoice. I have learned from these people what it means to be dedicated, to advocate for a cause, and to live and thrive with pain. I am thankful for the opportunity to work with these people and to learn from them.
oneSCDvoice is an education platform that gathers credible disease information and empowers people impacted by sickle cell disease. People can come to the platform to connect with people living with sickle cell disease and caregivers; to access high quality articles, videos, infographics, and more; and to learn about the clinical trial process and the legislation and policy process. With the launch of the Blog, the oneSCDvoice community members now have the opportunity to share their own stories and points of view.
We encourage questions and feedback and want to ensure you that we are listening to the community. Please contact us with ideas or topics you would like to suggest we write about—or let us know if you would like to submit a blog for consideration. Please reach out to us at contact@onescdvoice.com.
Sarah Staats
Member, Community Engagement Team
rareLife solutions
A Year After the Passage of the Historic Sickle Cell Disease Act of 2018, What Progress Has Been Made?
The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 (S.2465) became law (P.L. 115-327) on December 18, 2018. Almost a year has gone by and I’ve been wondering about the impact of P.L. 115-327 on the sickle cell disease (SCD) community. As the law was intended to help, among other things, SCD patients gain access to the medical care they require, I began researching to what extent there were any measurable and improved outcomes. Given their role and involvement with stewarding the bill, I went to the American Society of Hematology (ASH) website to look for recent news or updates I could report on to our community. I learned that ASH is advancing the goals of the 2018 law by aiming to encompass a larger footprint of impacted patients. In fact, they are asking people to advocate for dedicated funding for the Centers for Disease Control and Prevention (CDC) Division of Blood Disorders (DBD) to ensure their data collection program is implemented in all states. Their argument is that funding, to date, has only been able to cover a limited number of states where the goal should be the entire US sickle cell population.
Don’t know how you can help? I didn’t either. The ASH team has made it easy for you to get involved with a pre-populated form where you type in your name and address and an email goes to your state congressional representatives. I encourage all of you to take a moment and complete the form. For reference, I’ve copied the message that is sent below. If you are interested in getting more involved with policy decisions, please check out our Legislation and Policy page for information and insights.
Email message:
On behalf of patients and families, hematology researchers, physicians, and the entire healthcare community, I am writing to urge you to make individuals living with sickle cell disease (SCD) a priority by providing dedicated funding in fiscal year (FY) 2020 for the SCD data collection program in the Centers for Disease Control and Prevention's (CDC) Blood Disorders Division. This will allow Congress to build on the momentous progress that you and your colleagues made last December by passing the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 (P.L. 115-327). Funding for this vital program was included in the House-passed Labor, Health and Human Services, Education, and Related Agencies appropriations bill for FY 2020 and it is critical this funding remain in the final bill.
This law authorizes the CDC to award SCD data collection grants to states, academic institutions, and non-profit organizations to gather information on the prevalence of SCD and learn more about the complications and treatment of this disease. This information is necessary to improve understanding of the health outcomes of patients and to establish cost-effective practices to improve and extend the lives of SCD patients. Sadly, the CDC is currently only able to fund this key program in a handful of states. Dedicated federal funding for CDC's SCD data collection program is necessary to expand the program to additional states with the goal of covering the majority of the United States' SCD population over the next five years.
Once again, I urge you to support new, dedicated funding for the SCD data collection program at the CDC.
Thank you for your time and attention. Please contact me if I can provide any additional information to you..
For more information on the Bill and other sickle cell disease legislation, visit the: Legislation and Policy page of the platform.
