United to Conquer Sickle Cell Disease

SCDC Update, May 2018


ASH Releases Statement on Opioid Use in Patients with Hematologic Diseases and Disorders 

Over the last several years, there has been growing concern among the public and lawmakers in the United States about rising drug overdose deaths related to the misuse of opioids. However, federal policy on prescription drug abuse is complicated by the need to maintain access to these substances for legitimate medical use, including use by hematology patients as prescribed by their physician. While recognizing the severity of the opioid crisis, American Society of Hematology (ASH) members expressed concern about potential adverse effects that policy changes could have on the administration of necessary and appropriate pain medicine for patients with hematologic conditions, such as sickle cell disease. To address these issues, the Society released the ASH Statement on Opioid Use in Patients with Hematologic Diseases and Disorders. The policy statement is available on the ASH website and will be used in the Society’s advocacy efforts with federal government officials and staff, Members of Congress and staff, and state and local government officials, as well as in communications efforts.

All of Us Research Program Open for Enrollment  

On May 6, the National Institutes of Health (NIH) opened national enrollment for the All of Us research program in collaboration with the National Minority Quality Forum and other partners. All of Us is a unique effort to advance individualized prevention, treatment and care for people of all backgrounds. The overall aim of All of Us is to enroll 1 million or more volunteers and oversample communities that have been underrepresented in research to make the program the largest, most diverse resource of its kind. Individuals ages 18 and older will be able to enroll, regardless of health status. “The time is now to transform how we conduct research-with participants as partners-to shed new light on how to stay healthy and manage disease in more personalized ways. This is what we can accomplish through All of Us,” said NIH Director Francis S. Collins, M.D., Ph.D. To learn more about the All of Us research program and how to join, please visit https://www.JoinAllofUs.org

Patients Needed to Test Hydroxyurea Resource   

As part of the American Society of Hematology (ASH)’s multifaceted sickle cell disease (SCD) initiative, ASH is developing a hydroxyurea resource for young adult and adult sickle cell patients. The resource aims to dispel any myths about hydroxyurea, educate patients, and ultimately ensure that patients can make informed decisions about utilizing hydroxyurea. ASH would appreciate patient feedback of the material since they will be the ones using the resource. To participate, patients must be 18 years or older and have sickle cell disease. Please click here if you, your loved ones with SCD, or your patients are able to help with the review of the resource.

Sickle Cell Disease Resources for Clinicians  

The American Society of Hematology website offers clinical resources, available for the treatment of sickle cell disease (SCD), including evidence based pocket guides, a pediatric to adult hematologic care transition toolkit, and SCD-related webinars. The site also provides information about the Health Resources and Services Administration’s (HRSA) SCD Treatment Demonstration Regional Program grantees using the Project ECHO® (Extension for Community Healthcare Outcomes) model of telementoring and training to increase your knowledge about best practices in managing individuals with this complex disease. Visit ASH’s SCD resources for clinicians page for more information. 

Explore Free SCD Education and Resources 

The National Marrow Donor Program® (NMDP)/Be The Match® has a variety of free sickle cell disease (SCD) and transplant-related resources for patients and health professionals. 

New case-based podcast: Clinical Considerations for Patients with Sickle Cell Disease

In this case-based podcast, Drs. Shalini Shenoy and Linda Burns, summarize treatment considerations for a pediatric patient with sickle cell disease (SCD). They discuss advances in research, as well as patient- and disease-specific factors for clinicians to consider when determining optimal treatment plans for patients with SCD.

Jason Carter Clinical Trials Program

The Jason Carter Clinical Trials Program (JCCTP) helps people with blood disorders find and join clinical trials. The free program offers: 

• One-on-one telephone support from a clinical trial nurse to help navigate and search for clinical trials. 

• A simple web-based search tool to find U.S based clinical trials that are enrolling. 

• Easy-to-read educational resources for patients and families to learn about sickle cell treatment options and clinical trials. 

• Financial assistance for travel expenses related to clinical trials. 

To learn more, contact Scott Kerwin, MN, RN, CCRC, CCRN: clinicaltrials@jcctp.org

Sickle cell disease Booth in a Box available for your next community event

Sickle Cell Disease Booth in a Box is a free toolkit that includes an array of patient-centered educational resources and giveaways to educate people about transplant for SCD. It can be used at community health fairs, conferences and other events. Reserve your Booth in a Box today. Questions about Booth in a Box? Contact Lensa Idossa, MPH: lidossa@nmdp.org

World Sickle Cell Day is June 19th 

In 2008, June 19 was officially designated as World Sickle Cell Day to help spread awareness and understanding about the disease across the globe. With just one month to go, we would like to know: what will you or your group be doing to celebrate the 10 year anniversary of World Sickle Cell Day? Email coordinator@scdcoalition.org to be featured in next month’s special edition SCDC Update
 

Upcoming SCD Events 


A New Era in Sickle Cell Disease Conference  

The second biennial pediatric-adult regional sickle cell disease conference, A New Era in Sickle Cell Disease, will be held Saturday, May 19, 2018, at St. Jude Children’s Research Hospital, in Memphis, Tennessee. This conference is open to all health care providers, social workers, counselors, and others who provide health care for those with sickle cell disease (SCD). It is also open to SCD consumers, caregivers, and the public. Dr. Patricia Kavanagh, the Emergency Department Collaborative representative on the Sickle Cell Disease Coalition, will present on “Emergency Room Care for Sickle Cell Disease: Listening to Each Other.” Registration is free, but pre-registration is required. Click here to view the full agenda and register.
 

2018 Foundation for Sickle Cell Disease Research and Educational Symposium 

The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease (SCD) to help maximize quality of life and improve survival for the generations of people affected by SCD. The next annual FSCDR symposium will take place June 15-17, 2018 in Washington, DC. Learn more and register today. 

Terumo BCT Lunch During the 2018 FSCDR Symposium 

Terumo BCT will be hosting an industry sponsored lunch time symposia entitled Experience with Chronic Red Cell Exchange in the Adult Clinic Setting during the upcoming Foundation for Sickle Cell Disease Research’s 12th Annual Sickle Cell Disease Research and Educational Symposium. The event will be held on Saturday June 16th, during the lunchtime break and is open to all registrants. Speakers include Ifeyinwa (Ify) Osunkwo, MD, MPH (Levine Cancer Institute / Atrium Health), and Naresh Bumma, MD (Karmanos Cancer Institute-Wayne State University). 

Patient Focused Drug Development for Chronic Pain Public Meeting

The Food and Drug Administration (FDA) will be hosting a public meeting on July 9, 2018 at FDA’s White Oak Campus in Silver Spring, MD from 10a.m. to 4 p.m. The public meeting will provide patients (including adult and pediatric patients) with an opportunity to present to FDA their perspectives on the impacts of chronic pain, views on treatment approaches for chronic pain, and challenges or barriers to accessing treatments. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal antiinflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. For more information about this meeting, click here

SCDAA 46th Annual National Convention 

The Sickle Cell Disease Association of America (SCDAA)’s 46th Annual National Convention will take place October 13-18, 2018 in Baltimore, MD. This year’s theme is Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice. The SCDAA Annual National Convention is a four-day conference designed to address the multi-factorial aspects of sickle cell disease (SCD). The conference fosters the exchange of the latest scientific and clinical information related to the disease which is achieved through the offering of innovative symposia, training seminars, and interactive panel discussions. In addition, this year’s convention offers an array of exciting activities designed to educate and motivate the entire community to get involved in the fight against SCD. The convention is aimed at individuals living with SCD and sickle cell trait, their family members, physicians, researchers, nurses, social workers, psychologists, and community health workers. Click here to find out more, and to register.  

Additional details will be forthcoming. If you have any questions please send them to Rusinel.amarante@nih.gov or Jessica.peterson2@nih.gov

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