The Voice - March 2018 Issue

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F EM BR aU r cAhR Y 2 021081 8

THE VOICE A quarterly publication from the Sickle Cell Disease Association of America, Inc.

Reconnecting in Baltimore at the 46th Annual National Convention

NEW NATIONAL CHILD AMBASSADOR

Introducing Kiarra Roseburgh

5TH ANNUAL WALK WITH THE STARS

Moving for Sickle Cell

SCDAA GRANTEES ANNOUNCED

Supporting Community Based Organizations


CONTENTS • SICKLE CELL DISEASE ASSOCIATION OF AMERICA, INC.

Table of Contents Sickle Cell Disease Association of America, Inc. 3700 Koppers Road, Suite 570 Baltimore, MD 21227 800.421.8453 * scdda@sicklecelldisease.org

03

A Message from the Chief Medical Officer

06

Meet the New National Child Ambassador

07

5th Annual Walk With The Stars & Move-a-thon

09

46th Annual National Convention in Baltimore, MD

11

SCDAA Supports Community Based Organizations Through HRSA Grant

14

Chapter Spotlight: Sickle Cell Foundation of Tallahassee

WWW.SICKLECELLDISEASE.ORG • 410.528.1555 • SICKLE CELL DISEASE ASSOCIATION OF AMERICA, INC.


On behalf of SCDAA, thank you for taking the time to read our quarterly newsletter. In this issue, we share exciting news happening throughout the organization, including the passing of the Re-Authorization of the Sickle Cell Treatment Act in the U.S. House of Representatives and the introduction of the Senate companion bill, our 46th Annual National Convention, our 5th Annual Walk With The Stars & Move-A-Thon, the introduction of our new National Child Ambassador and our chapter spotlight, just to name a few. SCDAA thanks its Board of Directors for its commitment and dedication to advancing SCDAA's mission and to serving individuals and their families that are affected by sickle cell disease!

BOARD OF DIRECTORS David N. Braxton, PhD Chairman of the Board Senior Vice President, Strategic Resourcing Sun Trust Bank, Inc. Atlanta, GA Dennis Taylor, MBA, CCP Board Vice Chair Vice President of Human Resources Munich American Reassurance Company Norcross, GA JaKela Parker Board Treasurer Finance Director and Global Financial Controller DSM Biomedical, Inc. Exton, PA Genice T. Nelson, DNP, APRN Secretary Nurse Practitioner Specialist Sickle Cell Disease Day Treatment Clinic UTSW Comprehensive Sickle Cell Disease Program Dallas, TX Biree Andemariam, MD SCDAA Chief Medical Officer Director, New England Sickle Cell Institute Associate Professor of Medicine Division of Hematology/Oncology University of Connecticut Health Center Farmington, CT

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Lewis Hsu, MD SCDAA Vice Chief Medical Officer Director of the Sickle Cell Center & Professor of Pediatrics, Pediatrics Hematologist University of Illinois at Chicago Chicago, IL Lennette J. Benjamin, MD Professor Emerita Department of Medicine (Hematology) Montefiore Medical Center Bronx, NY Ed W. Flowers SVP & Chief People Officer World Kitchen, LLC Mableton, GA Lise J. Hall, MBA Associate Director of Consumer Marketing Lung Cancer Franchise AstraZeneca Washington, DC Christopher Hollins, MBA Executive Vice President Strategic Acquiring Partnerships WorldPlay, Inc. Atlanta, GA Bernie Lawrence-Watkins, Esq. Principal Attorney B. Lawrence Watkins and Associates Atlanta, GA

David N. Braxton, PhD Chairman of the Board

Gwendolyn Poles, DO Retired Physician, Medical Internist Harrisburg, PA Crystal Riley, PharmD. MHA, MBA Senior Manager/Healthcare Policy Reimbursement Baxter International, Inc. Washington, DC Gladys Robinson, PhD State Senator, North Carolina, District 28 Greensboro, NC Kim Smith-Whitley, MD Clinical Director Division of Hematology The Children's Hospital of Philadelphia Philadelphia, PA Wanda Whitten-Shurney, MD CEO & Medical Director Sickle Cell Disease Association of America, Inc, Michigan Chapter Detroit, MI Kwaku Ohene-Frempong, MD Board member Emeritus


A WORD FROM OUR CHIEF MEDICAL OFFICER One of the highlights of 2017 for me was witnessing the hope and enthusiasm of nearly 700 participants at our 45th Annual National Convention. The degree of excitement was palpable. From speed networking to meet the experts and focus groups that gave voice to those living with sickle cell disease—the multitude of educational, small group and plenary sessions allowed for something of keen interest for everyone. We witnessed the strengthening of old connections and the development of new partnerships among stakeholders who would have otherwise likely never met. Our program committee is already hard at work on this year’s 46th Annual National Convention—one that we hope will feed off the energy still emanating from last year’s event. There remains great progress in the development of new drug treatments for sickle cell disease with many clinical trials advancing toward final recruitment goals and inching closer and closer to the coveted FDA approval. A perfect storm of patient engagement, advocacy, pharmaceutical interest, and federal support continues to lead our community toward the day when each and every person living with sickle cell disease finally has treatment options. At SCDAA, we remain ever mindful of the depths of suffering endured by our community members who live with sickle cell disease. Our mission is foremost to forge pathways to alleviate that pain. Our voice is your voice through advocacy, legislative initiatives, community engagement, education and training. I, for one, look forward to continuing to engage directly with our member organizations and the individuals we serve to insure that our voices are with one accord. Please stay tuned for upcoming opportunities from the office of the CMO to enhance our discourse and collectively move forward in our quest to improve the lives of all individuals living with sickle cell disease. Sincerely, Biree Andemariam, MD University of Connecticut Director, New England Sickle Cell Institute Chief Medical Officer Sickle Cell Disease Association of America, Inc. PAGE 3• SCDAA

RESEARCH NEWS

On January 9, 2018, Global Blood Therapeutics (GBT) announced that the U.S. Food and Drug Administration (FDA) granted Breakthrough Therapy Designation (BTD) to voxelotor (previously called GBT440) for the treatment of sickle cell disease (SCD). The FDA selectively grants BTD to expedite the development and review of drugs with promising efficacy and safety data. The BTD decision for voxelotor was based on preliminary efficacy and safety data from Part A of the Phase 3 HOPE Study (GBT440-031), Phase 1/2 study and open-label extension in adults (GBT440-001/024), ongoing Phase 2 HOPEKIDS 1 study in children age 6 to 17 (GBT440-007) and Compassionate Access experience in adults with severe SCD (not eligible for the HOPE Study).

Imara Inc. has announced it has dosed the first patient in its randomized, double-blind, multi-center Phase 2a study, evaluating the safety and efficacy of IMR-687 in adult patients with sickle cell disease (SCD). Approximately 50 patients will be enrolled at several clinical trial centers in the United Kingdom with plans to expand to sites in the United States in the coming months. IMR-687 was designed to address the underlying pathology of SCD. An orally-administered, highly potent and selective phosphodiesterase 9 (PDE9) inhibitor, IMR-687 is a potentially disease-modifying therapeutic for SCD. Pre-clinical data demonstrate IMR-687 reduces both the sickling of red blood cells and blood vessel occlusion that cause debilitating pain, organ damage, and early mortality in affected patients. A Phase 1 clinical trial in healthy volunteers showed IMR-687 to be safe and well-tolerated. This new study will help further evaluate the tolerability and efficacy of IMR-687 as compared to placebo in adult patients with sickle cell anemia.


The Re-Authorization of the Sickle Cell Treatment Act Passes in U.S. House of Representatives & Companion Bill Introduced in the Senate On February 26, 2018, the U.S. House of Representatives passed H.R. 2410, the Re-Authorization of the Sickle Cell Treatment Act, which was introduced on May 11, 2017 by Congressmen Danny Davis (D-IL) and Michael Burgess (R-TX). Two days later, Senators Cory Booker (D-NJ) and Tim Scott (R-SC) introduced the Senate companion bill to HR 2410 on February 28. Senator Booker also invited SCDAA to a participate in Facebook Live roundtable discussion on the same day about sickle cell disease (SCD) and the Senate companion bill to H.R. 2410. SCDAA’s Chief Medical Officer, Dr. Biree Andemariam, represented the organization at the meeting. “This is a major victory for the sickle cell community,” said Sonja L. Banks, SCDAA President. “It has been a long journey to get to this momentous occasion, and SCDAA has worked tirelessly on the Treatment Act. We are so grateful for the ongoing support from Congressmen Danny Davis and Michael Burgess for co-sponsoring this important legislation in the U.S. House of Representatives. We also want to thank the Congressional Sickle Cell Caucus, including G.K. Butterfield (D-NC) for standing alongside the sickle cell (community, and many thanks to Senators Cory Booker and im Scott for introducing the companion bill in the Senate. In addition we are grateful to key partners such as the American Society of Hematology (ASH).” As the leading advocacy organization working on a national level to resolve issues surrounding SCD and sickle cell trait, SCDAA led a grassroots, community-driven effort over the past five years on HR 2410. This effort began with a community town hall of more than 230 members of the sickle cell community, including patients, parents, caregivers, and providers, providing feedback to enhance expired Treatment Act legislation. As a result, SCDAA incorporated the sickle cell community’s input and worked closely with Congressman Danny Davis to finalize a bill that incorporated new aspects to include: Young Adult Transition, programs that cover the life span of patients, and a line item for the Centers for Disease Control (CDC). SCDAA also worked to help form and serve as host organization for the Congressional Sickle Cell Caucus, and SCDAA President Sonja Banks testified in front of the U.S. House of Representatives Health Subcommittee in 2016 about the enhanced services that would be provided to the sickle cell community through the bill. Last year, the Re-Authorization of the Sickle Cell Treatment Act was reintroduced in the U.S. House of Representatives as H.R. 2410 and moved to markup.

Congressman Danny Davis

Congressman Michael Burgess

Congressman G.K. Butterfield

Senator Cory Booker

Senator Tim Scott

Both H.R. 2410 and companion bill allow states to receive federal funding for patient counseling, educational initiatives and community outreach programs. It also supports the continuance of a National Coordinating and Evaluation Center and communitybased sites that provide SCD follow-up and other services to support comprehensive care for newborns diagnosed with SCD. In addition, the bill improves upon the HRSA demonstration program. The treatment and prevention component of the reauthorization sets a more realistic number of eligible entities which can be funded. It also places a duty on all entities to “expand, coordinate, and implement transition services for adolescents with sickle cell disease making the transition to adult-focused health care.” Additionally, the Senate companion bill establishes surveillance grants for states and other entities. The data, which would be accumulated under this grant program covers associated health outcomes, complications and treatments, and would result in public health initiatives and strategies which would improve current estimates about the incidence and prevalence of the disease. It would identify health disparities, assess the utilization of therapies and strategies to prevent complications from the disease, and evaluate the impact of genetic, environmental, behavioral and other risk factors that may impact health outcomes.

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MEET KIARRA ROSEBURGH

A VOICE FOR YOUTH LIVING WITH SICKLE CELL DISEASE Pennsylvania native Kiarra Roseburgh, is a talented and active eight-year-old third grader who was born with type SC SCD. She attends and maintains good grades at Watson Comly School. She loves to play with her dolls, make new friends, and draw. She is an active member of the Joyful Noize Youth Choir, Dance Ministry and an honorary member of the Gems Missionary Team at Calvary Christian Church. She is also the 2017 second runner-up in the Diamonds & Pearls Pageant and was presented the “Women of Worth-Girl Power” Award for being a SCD Child Advocate at the 2017 Soiree in the Cities. Kiarra is also the new National Child Ambassador for the Sickle Cell Disease Association of America, Inc. (SCDAA). The SCDAA poster child tradition started in 1976 as an opportunity to elect goodwill ambassadors who would serve as emissaries and assist in public education campaigns. A nationwide search takes place biennially to find the next child who will give voice to millions of children who suffer from sickle cell disease (SCD). This year, a large number of applications were submitted and nine finalists were selected for the final phase of competition. "Being the new National Child Ambassador has provided Kiarra with a "microphone" that she uses to spread awareness and to ask for much needed funding for this worthy cause," says Kiarra's grandmother, Tanique Mitchell. Kiarra has begun to meet other children from around the world that have sickle cell disease and is sharing their stories and needs. This is very important to her role as the Ambassador, as she wants to inspire everyone to be just as strong as she is." Kiarra receives her specialized care from the Children’s Hematology Department at St. Christopher’s Hospital in Philadelphia. She has been living with the pain and complications of sickle cell disease all of her life, and managing her disease has become a routine part of her family’s life, since her first pain crisis at the age of one. Kiarra’s platform, “KickingItWithKiarra,” has brought together a small but supportive and committed team of

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Kiarra attends January movie premiere of Maze runner 3, starring Dexter Darden

family members and friends to join her efforts to increase awareness about SCD. “KickingItWithKiarra” started as just her team name for the annual SCDAA-PDVC-Walter E. Brandon Sickle Cell Disease Walk. Now, her platform has grown and expanded beyond just her family to include her church, school friends, her parents’ co-workers, and lots of social media friends, which has awarded her the #1 fundraiser for three years in a row for the annual Walk. Kiarra is also an advocate for herself and others, raising awareness during Sickle Cell Awareness Month in September, Sickle Cell Advocacy Day in May, and World Sickle Cell Day in June. On World Sickle Cell Day, Kiarra honored children affected by SCD and the warriors that have passed by lighting two candles and naming the individuals. She also started a pen-pal program for children living with SCD and has written to and become friends with young children as far away as the United Kingdom. She has hosted a Zumba-thon to raise funds, made visits to the Pennsylvania State Capitol, hosted toy drives for the past two years and donated holiday toys for the Hematology Department at St. Christopher’s Hospital. Kiarra’s dream is to inspire others in the SCD journey and to increase the support of this disease. She has amazing energy and a strong commitment to this cause, and SCDAA commends her for all that she has already accomplished. SCDAA is so very proud to have Kiarra as its National Child Ambassador, and looks forward to future projects with her.


AUGUST 18, 2018

WE'RE ON THE MOVE FOR SICKLE CELL! Get your sneakers ready and mark your calendars for August 18 for our 5th Annual Walk With the Stars & Move-a-thon! The Sickle Cell Disease Association of America, Inc. (SCDAA) will once again convene at the scenic Canton Waterfront Park, in Baltimore, MD, but this year we have added a new theme by incorporating different types of movement. Why? Because “we’re on the move for sickle cell!” You, your friends, and family members can participate in this wonderful event not only by walking and running, but also with jump roping, hula hooping, and Zumba, just to name a few. We look forward to all the fun and new ways individuals can support this event by “moving” to fight sickle cell disease (SCD). Walk With The Stars & Move-a-thon is one of SCDAA's largest events dedicated to finding better treatments and a cure for sickle cell disease, and to preventing the complications of this disorder through awareness, advocacy and research.

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This event is also the only 5K benefiting sickle cell disease on a national level, creating more opportunities of impact for our 42 chapters across the United States. Our chapters across the country will host their walks and virtual walks, from August 1 through October 1. 2018. To date, SCDAA has raised over $540,000 with this event for better treatments and improvements in the quality of health for individuals, families and communities affected by sickle cell disease. Last year we raised over $140,000! This year, with your help, we're taking SCD and SCT awareness to the next level with a goal of $300,000! United with every walker, runner, shaker and mover, together we can raise the necessary funds which will get us that much closer to finding a universal cure! For more information about the event, fundraising tips and how to register today, visit www.sicklecellnationalwalk.org.



SEE YOU IN BALTIMORE AT THE 46TH ANNUAL NATIONAL CONVENTION On behalf of the sickle cell community, Sickle Cell Disease Association of America, Inc. is pleased to announce the 46th Annual National Convention to be held in Baltimore, MD, from October 10-13, 2018 at the Hyatt Regency Baltimore Inner Harbor. For over 45 years, SCDAA has provided leadership nationally through its member organizations to create awareness of the impact of sickle cell disease on the health, economic, social and educational well-being of the individual and their families, and to create awareness of the requirements for resolution. It has provided effective direction in positioning sickle cell disease and its related problems as a major public health care concern and global problem. Our annual national convention plays a significant role in addressing the multi-factorial aspects of sickle cell disease. In fact, in an effort to advocate for improved quality of life for individuals and families affected by sickle cell disease, the four-day conference offers an array of exciting activities designed to educate and motivate the entire community through innovative symposiums, training seminars and interactive panel discussions. Last year's convention was a major success and our largest one to date with over 600 researchers, physicians, nurses, social workers and and individuals living with SCD & SCT in attendance. By popular demand, the convention will continue to offer its expanded program and signature events, including the Annual Unity Soiree, Exhibitor Expo, Patient Empowerment Luncheon, professional training for select groups and students, and the much anticipated Lonzie Lee Symposium. We invite you to join us as a valued guest in building the next generation of leaders and a sickle cell disease-free future for us all. We look forward to seeing you at the 46th Annual National Convention in Baltimore!

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SCDAA Awards Community Based Organizations with $2,033,080 for Newborn Screening Follow-up Program Sickle Cell Disease Association of America, Inc. (SCDAA) was awarded $2.9 million annually for the next four years from the Health Resources & Services Administration (HRSA) for the Sickle Cell Disease Newborn Screening Follow-up Program in June 2017. With these funds, SCDAA is continuing its efforts to establish the national infrastructure to ensure that individuals diagnosed with sickle cell disease (SCD) receive appropriate care coordination and follow-up services including counseling, education materials and access to a medical home. SCDAA has identified 16 community based organizations (CBOs) in fifteen states, to receive $2,033,080, 70% of its 2017 HRSA grant award, to support them with the capacity to identify, educate and link patients to care in 15 states across America.

COMMUNITY BASED ORGANIZATION GRANTEES AL - SCDAA-Mobile Chapter CA - Sickle Cell Disease Foundation of California CA - Cayenne Wellness Center GA – Sickle Cell Foundation of Georgia IL – Sickle Cell Disease Association of Illinois IN – Martin Center Sickle Cell Initiative LA – Baton Rouge Sickle Cell Anemia Foundation MI – Sickle Cell Disease Association of America, Michigan Chapter NC – Piedmont Health Services and Sickle Cell Agency

NJ – The Sickle Cell Association of New Jersey NY – Sickle Cell Thalassemia Patient Network OH – Ohio Sickle Cell Health Association OK – Supporters of Families with Sickle Cell Disease PA – Children’s Sickle Cell Foundation SC – James R. Clark Memorial Sickle Cell Foundation TX – Sickle Cell Association of Texas-Marc Thomas Foundation

SCDAA will achieve the following key objectives:

• Work with state CBO partners to provide care coordination, medical home assistance, education and other services to at least 15,000 non-active patients • Recruit, train and retain at least 150 Community Health Workers (CHWs) via a proprietary curriculum developed by SCDAA • Provide technical assistance to CBOs to conduct outreach to individuals with SCD • Develop partnerships with providers and share resources to promote individuals and families as partners in care • Develop, disseminate and ensure application of core competencies for CHWs in SCD • Establish and maintain a publicly available online repository of sickle cell-related evidence based materials, articles and other resources for use by children and adults with SCD, families and the SCD community • Develop partnerships with stakeholders from the public and private sectors to address emerging issues related to sickle cell disease and sickle cell trait As the nation’s largest and oldest member-based sickle cell advocacy organization, SCDAA is well-positioned to execute the Sickle Cell Disease Newborn Screening Follow-up Program. SCDAA is grateful for the opportunity to continue to support CBOs across the country in increasing access to care while building a larger community of informed, active and motivated patients.

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NEW CLASSES STARTED ON FEBRUARY 21! SCDAA's 3rd Community Health Worker Training Certification program classes started on February 21! The program covers the core competencies of community health workers, and includes additional concentration on sickle cell disease. Live lectures, in-class assignments and homework provide a wide array of learning opportunities. Classes are taught using a live interactive webinar format, and instructors are national leaders in their respective fields. The interactive format allows students to learn from industry leaders without having to travel. We utilize a user-friendly webinar software to ensure the class is accessible for all levels of technological expertise. For more information, visit our website.

Want to learn how to raise funds for your organization? Or how to your use social media to better increase awareness about sickle cell, or how to strengthen your marketing efforts to reach a broad audience? Our Leadership Academy helps to increase the productivity of professionals that work to assist their organizations in achieving long-term goals. It helps to build and improve organizational capacity and fosters a more effective learning culture within an organization. Building leadership skills and organizational effectiveness is paramount to the success of programs across the nation. That is why SCDAA offers an array of training programs to the public in an effort to improve quality of work, programs and services. Please visit our website to see our schedule of training opportunities and to register for a training session.



SCDAA CHAPTER SPOTLIGHT FIRST SICKLE CELL DISEASE CONFERENCE SICKLE CELL FOUNDATION OF TALLAHASSEE The Sickle Cell Foundation of Tallahassee, FL is proud of the success of its first major conference on sickle cell disease, held at the Hilton Sandestin Hotel in Destin, Florida. The Theme of the Conference was Sickle Cell Disease: Experience, Evolution, and Expectations. Conference presenters included Dr. Kwaku O’hene Frempong , retired Director of the Comprehensive Sickle Cell Center at Children’s Hospital in Philadelphia, now working in Ghana establishing the first Newborn screening program and Dr. Ann Haight a clinical researcher in Bone Marrow Transplantation. Dr. Haight is an Attending Physician with the Blood and Marrow Transplant Program, Associate Professor of Pediatrics and the Medical Director of the Aflac Research Office, Emory University, Atlanta, Georgia. Dr. Haight was surprised by one of her patients who has been cured of sickle cell disease and the donor during her presentation. The conference invited members of the health care teams caring for patients with sickle cell disease. In attendance also were family members and patients from the three counties served by the Foundation (Leon, Gadsden & Jefferson). The President of the Board of Directors of the Sickle Cell Foundation of Tallahassee, Daryl Parks, commented on the success of the first conference and looks forward to improvements for next year. The Executive Director, Mrs. Velma Stevens; the Office Assistant, Angela Brown; and Event Planner, Dr. Mildred Fennal received congratulations on the planning and execution of a successful first conference! Other presenters included: Dr. Michele Caggana , Director of Newborn Screening Program, at the Wadsworth Cente, David

Axelrod Institute, Albany, NY

Dr. Beverly Bonaparte , President of the Jacksonville Campus of Chamberlin College of Nursing

William Molette , Program Coordinator/Genetic Counselor for the Sickle Cell Outreach and Comprehensive Genetics Program from the Cohen Children’s Medical Cente, Northwest Health, New Hyde Park, NY Eleanor Peterson , retired Harlem Hospital/Columbia University Sickle Cell Center, Public Health

Nurse Educator

Dr. Mildred D. Fennal , Director of the International Nursing Education Consortium, Tallahassee, FL Dr. Tiffani Miller , Independent Consultant for the Department of Agriculture (Food and Safety) for

the State of Georgia

April Jones , Independent Consultant for Business Operations, Tallahassee, FL.

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