United to Conquer Sickle Cell Disease

SCDC Update, January 2019


 

January is National Blood Donor Month - Donate Today 

This January, the American Red Cross celebrates National Blood Donor Month and recognizes the lifesaving contribution of blood and platelet donors. National Blood Donor Month has been observed in January since 1970 with the goal of increasing blood and platelet donations during winter – one of the most difficult times of year to collect enough blood products to meet patient needs. During the winter months, inclement weather often results in cancelled blood drives, and seasonal illnesses like the flu may cause some donors to become temporarily unable to donate. Those living with sickle cell disease urgently need ethnic minorities to give blood. Blood from people of similar race and ethnicity is important in ensuring the best transfusion results, with the least potential reaction. Consider donating today

Comment on SCD Provisions in HHS Pain Taskforce Draft Report    

The U.S. Department of Health and Human Services (HHS) Pain Management Best Practices Inter-Agency Task Force was established to propose updates to best practices and issue recommendations that address gaps or inconsistencies for managing chronic and acute pain. The Task Force consists of representatives from relevant HHS agencies, experts in areas related to pain management, pain advocacy, addiction, recovery, substance use disorders, mental health, minority health, patients, and first responders. The Task Force has drafted a report on pain management best practices, including how best to manage pain as it relates to individuals living with sickle cell disease. The Task Force is requesting comments from the public on the initial draft document. The deadline to submit comments is April 1, 2019

ASH Offers New Benign Hematology Curriculum 

The American Society of Hematology has released the first seven out of 16 educational modules on sickle cell disease (SCD). These modules are offered as a part of the Benign Hematology Curriculum (BHC), a series of free, web-based videos designed to supplement education in benign hematology for fellows. Each course focuses on a different benign hematology topic, with the goal of providing fellows with an educational resource that might not be available locally. Click here to view the first seven modules in the SCD course. 

Sickle Cell Disease Bill Signed Into Law 

The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 (Public Law No: 115-327) was signed into law by the President on December 18, 2018. It was introduced by Senators Cory Booker, D-New Jersey, and Tim Scott, R-South Carolina, in February 2018 and cleared the Senate in October 2018. The companion bill in the House of Representatives was introduced by Representatives Danny Davis, D-Illinois, and Michael Burgess, MD, R-Texas. This important legislation reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Services Administration (HRSA) and authorizes the federal government to award data collection grants to states, academic institutions, and non-profit organizations with the goal of better understanding the prevalence and distribution of heritable blood disorders, including SCD, and the associated health outcomes and complications of these disorders. Thank you to the President for signing the bill, and congratulations to the many SCD advocates who helped lead to this victory. 

Fatimah’s Story   

 Health problems associated with sickle cell disease (SCD) can be difficult to manage, but for Fatimah, a college senior born with SCD, the condition was never a reason to limit what she could achieve. Read her inspirational story here.

Applications to Join ASH Research Collaborative SCD Clinical Trials Network Due January 31 

The Sickle Cell Disease (SCD) Clinical Trials Network (CTN) is an ASH Research Collaborative initiative launched with a mission of improving outcomes for individuals with SCD by expediting SCD therapy development and facilitating innovation in clinical trial research. It will provide the infrastructure for identifying patient cohorts for trials, matching trial sponsors with sites, facilitating recruitment of eligible patients, and ensuring optimally designed trials and an efficient, coordinated approach. Through patient engagement and optimized clinical trial execution, the Network will help bring new and more effective therapies to individuals with SCD. To apply to become a Network site, submit a letter of intent by January 31, 2019 to SCD-CTN@ashresearchcollaborative.org. Invited applicants will have full proposals due Spring 2019. Selected sites will then undergo on-site evaluations. For more questions regarding the Network, please view the FAQs or contact ASH RC CTN Staff at SCD-CTN@ashresearchcollaborative.org.

Improve Sickle Cell Care and Outcomes with Project ECHO  

Most physicians with expertise in sickle cell disease (SCD) practice in academic healthcare centers or large medical centers. That means that there are large gaps in access to care. Lack of knowledge about the long-term effects of SCD and physician assumptions can lead to suboptimal care and a less desirable quality of life for these patients. The EMBRACE Network (Education and Mentoring to Bring Access to Care), is a project that seeks to expand access to quality care, improve care delivery, and provide knowledge and support. Through regular ECHO® clinics, patient case presentations will be combined with didactic learning and mentoring. We invite you to participate in these sessions to engage with a team of multi-disciplinary specialists around the management of SCD.

ECHO® (Extension for Community Healthcare Outcomes), is an internationally recognized tele-mentoring model that connects providers with specialists through regularly scheduled, interactive, tele-mentoring sessions. Specialists use low-cost videoconferencing to conduct tele-ECHO clinics, and providers who participate are eligible for CME/CE and MOC III/IV credits.ECHO® clinics are held the first and third Mondays each month, and the second and fourth Thursdays each month. To join, contact Shirley Miller at (980) 442-2535 or Shirley.Miller@AtriumHealth.org.

Upcoming SCD Events 

Foundation for Sickle Cell Disease Research Symposium 

The Foundation for Sickle Cell Disease Research will be hosting its 13th Annual Symposium June 7-9, 2019 in Fort Lauderdale, FL. Registration is now open.  

SCDAA’s 6th Annual Walk with the Stars

Sickle Cell Disease Association of America (SCDAA)’s 6th Annual 1K, 2K and 5K Walk/Run With the Stars, will be held June 22, 2019 at Canton Waterfront in Baltimore, MD. Walk with the Stars is one of SCDAA’s largest events dedicated to finding better treatments and a cure for sickle cell disease (SCD). Every dollar raised goes towards preventing the complications of SCD through awareness, education, advocacy and research. To date, SCDAA has raised over $500,000 from this event for better treatments and improvements in the quality of health for individuals, families, and communities affected by SCD.
 

SCDAA National Convention 

Sickle Cell Disease Association of America’s 47th National Convention will be held October 9-12, 2019 in Baltimore, MD. The National Convention is a four-day conference designed to address the multi-factorial aspects of sickle cell disease (SCD) and sickle cell trait. In an effort to advocate for improved quality of life for individuals and families affected by SCD and its associated morbidity and mortality, the conference fosters the exchange of the latest scientific and clinical information related to the disease. This is done through the offering of innovative symposia, training seminars, interactive panel discussions, and special events. Look for an announcement in the next couple of weeks about abstract submissions.

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