United to Conquer Sickle Cell Disease

SCDC Update, April 2019


ASH is Seeking Feedback on Two New SCD Guidelines on Pain and Transplantation

The American Society of Hematology (ASH) is seeking public comments on two draft clinical practice guidelines: sickle cell disease (SCD)-related pain, and SCD-related transplantation. The deadline for comments is May 13, 2019 and the related materials can be found on the ASH Website. In 2018, the first three of ASH’s series of five SCD guidelines opened for public comment covering SCD-related transfusion support, cardiopulmonary and kidney disease, and cerebrovascular disease. Anyone is welcome to review the draft recommendations and submit comments, including ASH members, non-member physicians and researchers, allied health professionals, representatives of medical societies, industry and insurance companies, patients, caregivers, and members of the public. Feedback received will be provided to the guideline panels for review. Comments will also be considered for implementation and dissemination efforts following publication, and future revision efforts. Please let your colleagues and friends know about this public comment period. If you use social media, you may create your own tweet using #ASHGuidelines.

CDC Issues Key Clarification on Guideline for Prescribing Opioids for Chronic Pain

The Centers for Disease Control and Prevention (CDC) released clarification on prescribing opioids to manage pain for certain conditions. The clarification, regarding CDC’s Guideline for Prescribing Opioids for Chronic Pain- issued in a letter from the agency to the American Society of Clinical Oncology (ASCO), the American Society of Hematology (ASH), and the National Comprehensive Cancer Network (NCCN) – comes as a result of a collaborative effort by these organizations to ensure safe and appropriate access to opioids for individuals living with sickle cell disease, as well as cancer patients and survivors. To learn more, see the press release on this issue, and the letter from the CDC. 

CMS Recommends Beneficiaries with Sickle Cell Disease to be Excluded from Opioid Safety Edits in Medicare Advantage and Part D Plans

On April 1, the Centers for Medicare & Medicaid Services (CMS) released final policy and payment updates to the Medicare Advantage and Part D programs for 2020. The agency recommended that beneficiaries with sickle cell disease be excluded from the opioid safety edits. The agency references the Centers for Disease Control and Prevention Guideline for Prescribing Opioids for Chronic Pain, which states that “given the challenges of managing the painful complications of sickle cell disease, readers are referred to the National Institutes of Health (NIH) National Heart, Lung, and Blood Institute’s Evidence Based Management of Sickle Cell Disease Expert Panel Report for management of sickle cell disease.” Read more, here

New Funding Opportunity for Researchers - Deadline May 31, 2019

All researchers are invited to take on the challenge of advancing cures for sickle cell disease (SCD). The Doris Duke Charitable Foundation is accepting applications through May 31, 2019, 3 pm ET to support research to advance curative approaches for SCD, including gene modification and drug therapies aiming to safely and sustainably increase red blood cells that do not sickle. Competitive applications will receive awards with a start date of September 1, 2019. Visit the Sickle Cell Disease/Advancing Cures page for more details on the award competition.

Scholarships Available for Individuals Living With SCD 

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) established a competitive college scholarship program to assist students with sickle cell disease (SCD) who will be attending an institution of higher learning in the United States. IASCNAPA plans to distribute four $1,000 scholarships this year. Applicants must have a form of SCD and be enrolled in, or have been accepted by, a recognized and accredited post-secondary school, including college, university, trade school, or other institution of higher learning. Applications are currently being accepted through July 1, 2019. For more information, to contribute to the scholarship fund, or to apply for a scholarship, go to www.iascnapa.org.

ASH Sickle Cell Disease Centers Workshop 

The American Society of Hematology (ASH) is hosting a workshop that will train health care professionals in some of the skills necessary to establish a center focused on the needs of adults living with sickle cell disease (SCD) on November 5-8, 2019. Tackling SCD requires a team effort, therefore, ASH is encouraging teams to apply to attend the workshop. Members of this team may include: a business official from the institution where the center will be housed, health care professional who will work in the center, and a representative of the SCD community the center will serve. Workshop participants will come to understand the basic components of SCD centers, the process for developing a business plan and partnerships for advocacy, the ins and outs of operations, and approaches to measuring impact and improving the quality of care. The application is FREE and travel and lodging expenses will be paid for accepted participants. Learn more and apply now on the ASH Website.

SCDAA Hosts Annual Advocacy Day Event 

On April 8-9, 2019 the Sickle Cell Disease Association of America (SCDAA) hosted its annual Advocacy Day Event in Washington, DC. This year’s Advocacy Day was an opportunity for patients and caregivers affected by sickle cell disease (SCD) to advocate for stable funding for research, better healthcare access, expanded programs, and increased education and awareness for the SCD community. Participants met with their members of Congress to share their stories and key legislative issues impacting the SCD community. Congrats to SCDAA and its chapters for a successful event!  

National Academies Sickle Cell Meeting

The National Academies of Sciences, Engineering, and Medicine is developing a strategic plan and blueprint for addressing sickle cell disease in the United States. The committee will provide guidance on priorities for programs, policies, and research. On Tuesday, April 16, 2019, the Committee on Addressing Sickle Cell Disease: A Strategic Blueprint and Plan for Action convened an open session for the public. This open session included stakeholder panels on:  The Impact of Sickle Cell Disease on Patients, Families, and Communities, Addressing the Needs of Sickle Cell Patients Across the Lifespan, Health Care for Sickle Cell: Health Professional Awareness and Education, and Curative Therapies for Sickle Cell Disease.  
 

Sickle Cell Programme Researchers Serve as Role Models to Tanzanian Girls 

The Teen Girls Organization (T Go) is a student led organization in Dar es Salaam, Tanzania that works with girls in the local community to educate them in areas not taught in their school system. The project organizes an annual career event with the intent of inspiring teen Tanzanian girls to pursue non-traditional career paths. Tanzanian girls from a multitude of schools across Dar es Salaam and Bagamoyo were able to meet and interact with Tanzanian and international women who have pursued a range of careers, educating and inspiring young women and demonstrating that following their own dreams and interests is possible. Members of the Sickle Cell Programme, Dr Jill Kent (Grants Adviser), Dr Hilda Tutuba (Research Fellow), and Florence Urio (Assistant Lecturer and PhD Fellow) talked about science, the range of science careers, and the career paths of the women working with the Sickle Cell Programme. Dr. Hilda also provided information on sickle cell disease (SCD) and the importance of knowing one’s SCD status. Some of the girls were not previously aware of SCD, which resulted in numerous questions from the group.

Annual National Convention- Call for Abstracts 

The Sickle Cell Disease Association of America (SCDAA)’s 47th Annual National Convention will take place on 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.

Upcoming SCD Events Webinar: “What’s New at SCDAA”

Attend the California Sickle Cell Data Collection (SCDC) program’s webinar, What’s New at the Sickle Cell Disease Association of America (SCDAA) on Wednesday, April 24, 2019, 1:00 - 2:30 pm ET. Find out about changes at the national organization to advocate for people affected by sickle cell conditions. The presenters will be SCDAA President and CEO, Ms. Beverley Francis-Gibson, and SCDAA Chief Medical Officer Dr. Biree Andemariam. Click here to register.  

Department of Health and Human Services SCD Webinar

For more information, visit https://bit.ly/2HKSEih

Community Engagement Workshops 

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 Los Angeles, CA on April 27, 2019. The Los Angeles ASH RC Sickle Cell Clinical Trials Network Community Engagement Workshop is approaching, and we hope you can assist us by spreading the word about the workshop within your local community. Registration is also open for our Atlanta workshop, to be held on May 18, 2019!  

Why? To be a part of a new plan to create treatments that are important to the sickle cell disease 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/2UVqnIB)

For more information about ASH RC, visit https://www.ashresearchcollaborative.org/ or call 202.552.4928

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 Retinopathy- Adrienne Scott, MD
  • Promoting Bone Health in Patients with SCD - Ifeyinwa 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.

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

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