United to Conquer Sickle Cell Disease

SCDC Update, July 2019


CMS Releases First Prevalence Estimates on the Medicare & Medicaid Population Living with SCD in the U.S.

The Centers for Medicare & Medicaid Services (CMS) has released two data highlights detailing the national prevalence estimates of sickle cell disease (SCD) among Medicare Fee-for-Service (FFS) and Medicaid beneficiaries. CMS has also published a report comparing opioid utilization patterns among Medicare FFS beneficiaries with SCD to two populations with complex pain syndromes: non-SCD beneficiaries with cancer and non-SCD beneficiaries in hospice care. Additionally, to support further research on SCD, CMS has released a new SCD indicator in the CMS Chronic Conditions Data Warehouse (CCW). CMS used the SCD indicator to produce the two data highlights. Read more from the CMS Office of Minority Health at go.cms.gov/omh.

Five Nonprofit Organizations Receive Funding to Support SCD Initiatives

Five nonprofit organizations will receive a total of nearly $250,000 in funding through Novartis’ Solutions to Empower Patients (STEP) Program™, including two Sickle Cell Disease Coalition Members: Sickle Cell 101, and the Sickle Cell Foundation of Georgia. Now in its second year, the STEP Program supports nonprofit organizations by funding innovative programs that empower individuals living with sickle cell disease with significant unmet needs to navigate a path to better care. This year’s focus is on addressing some of the most pressing issues in the sickle cell disease (SCD) community. Click here to learn more. 

STAR Hosts Its Third Annual Meeting

Sickle Cell Transplant Advocacy & Research Alliance (STAR) convened its third annual meeting in Canmore, Alberta, Canada on June 13-14, 2019. Researchers presented updates from active STAR clinical trials currently enrolling patients including a study of Abatacept to improve acute graft versus host disease prophylaxis and a study of nonmyeloablative matched sibling transplant to minimize toxicity. STAR’s work to bring greater awareness to transplant for sickle cell disease was also discussed, including a newly designed website (https://www.curesicklenow.org/) and a planned national campaign in September with The National Marrow Donor Program®/Be The Match to increase donor diversity in the bone marrow registry.  

The National Marrow Donor Program®/Be The Match Resources  

Patient Financial Assistance Grants

The National Marrow Donor Program®/Be The Match® is offering patient assistance grants to help with financial and insurance barriers to transplant and clinical trials. The Patient Assistance Program can help qualified sickle cell disease (SCD) patients with donor search costs, temporary housing expenses, travel expenses, co-pays for medication and insurance, and other living expenses. A transplant center or clinical trial team members can request an application by emailing patientgrants@nmdp.org. To learn more click here.

Free Sickle Cell Disease Peer Connect Program

The National Marrow Donor Program/Be The Match and The Sickle Cell Transplant Advocacy and Research Alliance (STAR) are excited to announce their partnership for the Sickle Cell Disease Peer Connect Program. This program connects SCD patients and caregivers with trained volunteer recipients and caregivers who have been through transplant. Program participants are matched with volunteers who are similar in age and transplant role (patient or caregiver). Volunteers are available by phone or email to listen, answer questions, and share their own transplant experiences. Request a connection here.

Order an SCD Booth in a Box for Sickle Cell Awareness Month Events

Sickle Cell Disease Booth in a Box is a free toolkit that can be used at community health fairs, conferences and other events. It consists of an array of patient-centered educational resources and giveaways to educate individuals living with sickle cell disease and health professionals about transplant for SCD. Learn more and reserve your Booth in a Box today! Questions about Booth in a Box? Contact Amber Ruffin, MPH: aruffin@nmdp.org.

Upcoming SCD Events 

 

ASH Research Collaborative Hosts SCD Community Engagement Workshops

In August, the ASH Research Collaborative (ASH RC) will host two Sickle Cell Disease (SCD) Community Engagement Workshops – Saturday, August, 3 2019 in New York, NY and Saturday, August 10, 2019 in Oakland, CA

The SCD Clinical Trials Network is committed to having individuals living with SCD involved early and in a meaningful way as the network develops strategies to improve enrollment, design, and execution of clinical trials. The goals of the workshop are to 1) understand barriers to clinical trial participation, as well as identify solutions to overcome challenges and; 2) prioritize research areas of interest to the community. 

Findings from the workshops will help develop an SCD Patient-Oriented Research Priority Report to be shared with SCD community stakeholders, establishing a common understanding of goals for community-focused SCD research. 

6th Annual Sickle Cell Patient & Family Educational Symposium 

The Sickle Cell Community Consortium (SCCC) will be hosting the 6th Annual Sickle Cell Patient & Family Educational Symposium (the Warriors Convention) at the Hilton Dallas/Plano Granite Park Hotel from July 24 - 28, 2019. The Warriors Convention is the only national sickle cell meeting designed, created, and hosted by the sickle cell patient and family community. The SCCC is excited to welcome the Sickle Cell Association of Texas Marc Thomas Foundation, the As One Foundation, and Carol’s Promise Sickle Cell Foundation as co-hosts  This year’s theme is Sickle Siblings: Bonded by Blood.  Sponsorship opportunities are available.  

• Visit http://www.sicklecellconvention.org/to learn more. 

• Submit an abstract at www.sicklecellconvention.org/abstracts

• Register to attend at www.sicklecellconvention.org

• Apply for a patient/caregiver scholarship at www.sicklecellconvention.org/scholarship

SCDAA Hosts Open House at New Office Location

Sickle Cell Disease Association of America is moving its national offices and will be hosting an Open House on August 23, 2019, from 2-4pm. Please make sure to update your contact information with the new address: 

Sickle Cell Disease Association of America, Inc.

7240 Parkway Drive, Suite #180

Hanover, MD 21076

NHLBI Annual Sickle Cell Disease Research Meeting

The National Heart, Lung, and Blood Institute (NHLBI) will host its annual Sickle Cell Disease Research Meeting on August 26-28, 2019 in Bethesda, MD. This three-day meeting provides a yearly forum for investigators, practitioners, and interested health care providers to discuss the process of ongoing clinical trials, hear presentations about new developments in scientific and clinical aspects of sickle cell disease, and interact with other investigators and NHLBI program staff in an informal setting. This year’s program includes six symposia that cover a broad range of topics National Institutes of Health program staff will make presentations on the progress of two major initiatives: The NHLBI Sickle Cell Disease Implementation Consortium and the Cure Sickle Cell Disease Initiative. Click here to register for the meeting and view the agenda.

Annual Sickle Cell Adult Provider Network Symposium 

This year’s annual Sickle Cell Adult Provider Network (SCAPN) symposium will be held on Wednesday, August 28, 2019 during the upcoming NHLBI  Sickle Cell Disease Clinical Research Meeting in Bethesda, MD. This year’s symposium will focus on developing and improving adult sickle cell programs.  There will be four speakers representing both new and established programs of various sizes led by hematologists and by a general med/peds provider.  The chairs of the symposium are Wally Smith, MD (Virginia Commonwealth University); John Roberts, MD (Yale New Have Health Care); and John Strouse, MD, PhD (Duke University). Speakers will include Sophie Lanzkron, MD, MHS (Johns Hopkins University); Payal Desai, MD (The Ohio State University); Biree Andemariam, MD (University of Connecticut); and Tiffany Pulcino, MD, MPH (University of Rochester).  For more information, contact Shirley Miller, SCAPN Coordinator at email shirleyrenee3@gmail.com.

Sickle Cell Disease Therapeutics Conference 

Global Blood Therapeutics (GBT) in partnership with the Sickle Cell Disease Association of America (SCDAA) will hold the 8th Annual Sickle Cell Disease Therapeutics Conference (SCDTC) Tuesday, September 10, 2019 at The Westin City Center in Washington D.C. This annual forum convenes key community stakeholders including healthcare professionals, individuals living with sickle cell disease (SCD), advocates, investors, policy makers, and industry representatives to discuss relevant topics related to SCD along with the latest developments in treating SCD. This year’s event will be hosted by Beverley Francis-Gibson, SCDAA’s President and CEO.  Conference speakers include: Biree Andemariam, MD; Lakiea Bailey, PhD (Sickle Cell Community Consortium); Chuck Chesson, PhD (American Society of Hematology); Jeremie Estepp, MD (St. Jude Children’s Research Hospital); Andre Harris, CHW (Foundation for Sickle Cell Disease Research); Greg Kato, MD (University of Pittsburg); Allison King, MD, MPH, PhD (Washington University in St. Louis); and Hertz Nazaire (artist and SCD advocate). Can’t attend in person? Sickle Cell Warriors has partnered with GBT to livestream the conference via Facebook Live. For more information, visit the official SCDTC website: http://scdconference.com/.  

Sickle Cell Society UK Celebrates 40 Years  

Please visit sicklecellsociety.org for more information. 

SCDAA National Convention

Sickle Cell Disease Association of America’s 47th National Convention is scheduled for 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 with 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. Early bird registration ends August 5. Register today!

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