United to Conquer Sickle Cell Disease

SCDC Update, March 2019


60 Minutes Features Gene Therapy for Sickle Cell 

On Sunday, March 10, the National Institutes of Health (NIH) Director Dr. Francis Collins and Senior Investigator Dr. John Tisdale, were highlighted in the news program 60 Minutes, which featured a segment on the search for better treatments and a cure for sickle cell disease (SCD). The episode features Dr. Tisdale’s clinical trial at the NIH Clinical Center, where he and his team are using gene therapy to reduce the debilitating complications of this disease. The episode notes that if effective, gene therapy could improve treatment options for the millions of people around the world who suffer from SCD. Click here to view the episode. 

ASGCT Patient Education on Gene Therapy Now Available! 

The American Society of Gene and Cell Therapy (ASGCT) has launched patient friendly educational resources on Gene Therapy for Blood Disorders, including Sickle Cell Disease, Beta Thalassemia, and Fanconi Anemia. This is a part of the new patient education portal located on the ASGCT website that hosts a variety of short animated videos, infographics, and dynamic content. Wide distribution is encouraged to benefit the patient community, so please enjoy and share. Feel free to contact, Alison Kujawski, Program Manager at akujawski@asgct.org, with any comments or questions.  

Call for Volunteers: Help Create a More Diverse Blood Donor Base

AABB, America’s Blood Centers, ADRP (an International Division of America’s Blood Centers), and the American Red Cross, along with the rest of the blood community, recognizes the need to increase the diversity of the donor base to meet the ongoing needs of various patient populations. To further their mutual work in this area, the blood community is working with the Sickle Cell Disease Coalition (SCDC) to promote increased awareness surrounding the blood supply and the need for donations. To accomplish this work, a group of interested representatives will be convened from various blood centers, hospitals, national organizations, and SCDC partner groups. The initial work is expected to focus on a joint statement regarding the importance of diversity in the blood supply and identification of 2019 priorities. Individuals interested in participating, or those that have additional questions, can email pep@aabb.org or info@adrp.org.

Advancing Equity in Care for People Living with Sickle Cell Disease 

In January, the 2019 Quality Conference, hosted by the Centers for Medicare & Medicaid Services (CMS), attracted nearly 3,300 thought leaders in health care quality improvement. During the conference, Shondelle Wilson-Frederick, PhD, from CMS’ Office of Minority Health, moderated a panel that described how federal agencies, patient advocacy groups, and quality improvement organizations are partnering to advance equity in care delivery and care coordination to comprehensively address the needs of people living with sickle cell disease (SCD). 

  • Cori Grant, PhD, MBA, Vice President of Operations, highlighted how Qsource and atom Alliance has improved acute pain management through patient education for 3,000 patients with SCD in Memphis, TN, and reduced hospital utilization resulting in an estimated savings of nearly $1.7M. 
  • Marlene Peters-Lawrence, BSN, RN, RRT, Clinical Trials Specialist at the National Heart Lung and Blood Institute, shared information from a needs assessment conducted by the SCD Implementation Consortium which found that nearly 70% of patients went to the emergency department for care they needed right away. 
  • Mr. Adrian Williams, a health and wellness advocate with SCD, shared his experience of embarking on an emotional, physical, and spiritual wellness journey that included a plant-based diet, exercise, and stress reduction program. Mr. Williams’ lifestyle has resulted in him becoming happier, healthier and most importantly, sickle cell crises free for more than 10 years.  

Photo L to R: Dr. Shondelle Wilson-Frederick, Marlene Peters-Lawrence, Dr. Cori Grant, and Adrian Williams.

Ironwood Pharmaceuticals Sponsors “Men Living with Sickle Cell” Town Hall

Men living with sickle cell disease (SCD) face unique challenges due to societal expectations and cultural stigmas, and as such, many feel discouraged from speaking out about their experiences and advocating for themselves. Sickle Cell Association of Houston, BlackDoctor.org, and Ironwood Pharmaceuticals joined together to give men with SCD an opportunity to have a voice and connect with one another through Ironwood’s first “Men Living Well with Sickle Cell” town hall. The men who participated spoke about issues that are important to them, such as pain management, emergency room experiences, mental health, the disease’s impact on dating, mentoring, family life, friendships, participation in clinical trials, and personal triumphs while living with SCD. The town hall was held in Houston, TX, and streamed live on Facebook to encourage even wider participation. Twenty-six men attended the event in person, and more than 72,000 viewed the event on Facebook. If you missed the event, make sure to check out the “Men Living Well With Sickle Cell” video. Due to overwhelmingly positive feedback on the importance of this topic and the need to continue the conversation, a second town hall event is being planned for June.

“Men Living with Sickle Cell” town hall event

SCDAA’s Annual National Convention - Call for Abstracts

The Sickle Cell Disease Association of America (SCDAA)’s 47th Annual National Convention is scheduled for October 9-12, 2019, in Baltimore, MD. This year’s theme is: Sickle Cell Community Embracing Change Together. Last year, the convention was attended by over 600 researchers, physicians, nurses, social workers and individuals living with sickle cell disease (SCD) and sickle cell trait. If you are a researcher, community-based member organization, physician, nurse, social worker, or someone working on behalf of people with SCD and their families, SCDAA would like to highlight your work at the 47th Annual National Convention. To be eligible, abstracts must meet guidelines and be submitted by June 3, 2019. Click here for more information. 

SCD Storytelling Project 

Last September, Novartis teamed up with Jordin Sparks and the Sickle Cell Disease Association of America to invite people touched by sickle cell disease (SCD) to share their stories through Novartis’ Generation S storytelling project – a project to raise awareness about SCD. Since then, hundreds of people have opened up their lives to share a glimpse of how this disease affects them. A few of the people who shared their SCD stories of challenge, hope and inspiration, will get the chance to work with Jordin Sparks to help educate the nation about this lifelong disease. Check out their most recent conversation here. Thank you to all who shared their stories, and to organizations like Sickle Cell 101, Sick Cells, Sickle Cell Community Consortium, and Bold Lips for Sickle Cell for supporting this initiative! Since the outpouring of stories was so overwhelming, www.JoinGenS.com will remain open for new story submissions. The group looks forward to hearing many more stories from the SCD community. 

New Funding Opportunity

The Centers for Disease Control and Prevention have a new funding opportunity: Characterizing the Complications Associated with Therapeutic Blood Transfusions for Hemoglobinopathies (DD19-1903). Activities will include education of patients, families, providers, and blood banks to decrease the complications from blood transfusions. Click “Subscribe” to receive updates about this funding opportunity. The closing date for applications is May 3, 2019.

ASH Members Advocate for Biomedical Research and SCD on Capitol Hill 

On March 7, members of the American Society of Hematology (ASH) Committee on Government Affairs visited Capitol Hill to meet with Members of Congress and their staff. ASH members urged Congress to support biomedical research, and encouraged Congress to build on the progress of the recently passed Sickle Cell Disease (SCD) Research, Surveillance, Prevention, and Treatment Act of 2018, by providing new, dedicated funding for the SCD Data Collection Program at the Centers for Disease Control and Prevention. If you are interested in joining ASH’s advocacy, you can reach out to your legislators to educate them about SCD and encourage support for biomedical research and SCD by visiting the ASH Advocacy Center.

Upcoming SCD Events 

 

**Symposium on Sickle Cell Disease in Tanzania **

The Muhimbili University of Health and Allied Sciences would like to extend an invitation to attend its Symposium on Updates on Research in Sickle Cell Disease in Tanzania: Genomics and Gene Therapy, Friday, March 22, 2019, from 10:30am - 12pm. If you are in Tanzania, and interested in attending, please make sure to register here. For questions, contact the Sickle Cell Programme at info@blood.ac.tz or +255 743 961162. 

SCDAA Advocacy Day 

Community Engagement Workshop

The ASH Research Collaborative (ASH RC) with CISCRP, the organization’s community engagement partner, will conduct the ASH RC Sickle Cell Disease Clinical Trials Network (CTN) Community Engagement Workshop in Chicago, IL on April 13, 2019! We are less than one month away from the ASH RC Sickle Cell Clinical Trials Network Community Engagement Workshop and hope you can assist us by spreading the word about the workshop within your local community.

Why? To be a part of a new plan to create treatments that are important to the sickle cell disease (SCD) community and better understand the barriers to clinical trial participation.  

That’s great! Tell me more. By attending the workshop, the SCD patient community will help us to create a SCD Patient-Oriented Research Priority Report that will be shared broadly with the SCD community to accelerate SCD treatment development. This report will be reviewed and updated as new treatments, therapeutics, and SCD research is made available.  

How can I help? If you know of anyone within the SCD patient community who would like to attend this workshop and help make a difference for people living with SCD, please click here to find out more!  All workshop participants will receive paid parking, a $50 gift card, as well as lunch, as a thank you for their time.  

Thank you!(If the “click here to find out more” link doesn’t work, try clicking here: https://bit.ly/2HqBmXw)For more information about ASH RC, visit https://www.ashresearchcollaborative.org/ or call 202.552.4928. Additional Workshops in other cities will be convened in 2019 and the dates will be shared soon.

 

ASPHO Conference - Session on Sickle Cell Disease 

The American Society of Pediatric Hematology/Oncology’s 2019 Annual Conference will feature a session on sickle cell disease (SCD), Friday, May 3, from 4:45 pm – 6:15 pm. The session, titled “Putting an End to End Organ Damage in Sickle Cell Disease,” will be moderated by Dr. Courtney D. Thornburg. Though the survival for pediatric patients with SCD has substantially improved in recent years, the mortality has not decreased for adults with SCD. Adults with SCD have excess morbidity and mortality from end organ damage which typically starts in early childhood. Pediatric hematologists must understand the pathogenesis, screening methods and treatment options for these complications so that they can help to prevent excess morbidity and mortality later in life for patients with SCD.

Sickle Cell RetinopathyAdrienne Scott, MD

Promoting Bone Health in Patients with SCDIfeyinwa Osunkwo, MD, MPH

Sickle Cell Nephropathy Ram Kalpatthi, MD

Click here to register for the conference. 

Foundation for Sickle Cell Disease Research 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 7-9, 2019, in Fort Lauderdale, FL. Learn more and register today

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 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. Registration is not yet open, but we will keep you posted once it does!

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