New International Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait
Sickle Cell Disease Association of America, Inc. (SCDAA) and the African Sickle Cell News & World Report are proud to announce a new international media partnership that will enhance global awareness efforts about sickle cell disease (SCD). The partnership will use digital platforms and print materials to share educational information with individuals living with SCD and their families and the general public. The partnership will work to dispel myths about the disease, share patient stories and treatment options and engage new audiences.
“Some research estimates that about 240,000 babies are born with sickle cell disease in sub-Saharan Africa every year, and that at least half of such children die before age five,” said SCDAA President and CEO Beverley Francis-Gibson. “Education and early diagnosis is paramount to extending life expectancies and saving lives, and that is why this partnership is so important. African Sickle Cell News & World Report focuses on sharing information about this disease from around the world. Together, we can enhance our efforts to educate and advocate on behalf of those affected by this disease.”
SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 100,000 Americans have the disease, and more than 1,000,000 worldwide have sickle cell trait. Each year, approximately 1,000 babies in the United States are born with SCD, and there is no universal cure for this life-threatening disease.
“We are excited to partner with SCDAA, the leading national voice for the sickle cell community,” said Ayoola Olajide, Editor, African Sickle Cell News & World Report. “Through education, awareness and advocacy, we seek to collaboratively bring worldwide attention to sickle cell disease and to extend SCDAA’s reach internationally. We are looking forward to this partnership and to continuing to support the international sickle cell community in this collaborative initiative.”  

Sickle Cell Disease Association of America, Inc. (SCDAA) and The Pain Community are proud to announce a new partnership that will increase education and awareness information about comprehensive integrative pain management and wellness to support individuals living with sickle cell disease (SCD) and their family members. The partnership will use digital platforms and other collateral to share important resources and to engage those affected by SCD in achieving better health and wellness in partnership with their healthcare providers.
“Pain is the most common complication of SCD, and one of main reasons that people with SCD go to the emergency room or hospital,” said SCDAA President and CEO Beverley Francis-Gibson. “The Pain Community shares with SCDAA the goal of improving the quality of life for individuals living with pain, and SCDAA looks forward to working with them to help empower those living with sickle cell disease by providing education and advocacy information for managing pain.”
SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 100,000 Americans have the disease, and more than 1,000,000 worldwide have sickle cell trait. Each year, approximately 1,000 babies in the United States are born with SCD, and there is no universal cure for this life-threatening disease.
“The Pain Community is thrilled to partner with the Sickle Cell Disease Association of America, Inc.,” said TPC Board Chair Karen Keifer, MSN, APN, NP-C, RN-BC. “This affiliation is a great opportunity to amplify SCDAA’s work and share the educational, coping and advocacy resources available that are free at PainCommunity.org We look forward to ensuring that the sickle cell community has resources to help manage their pain and improve their quality of life.”  

Company Also Launches Disease Awareness Campaign to Raise Awareness Among Physicians About the Silent Damage Caused by Sickle Cell Disease
Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT), in partnership with sickle cell community-based organizations (member organizations), today announced the launch of Sickle Cell Speaks, a national campaign focused on breaking down stigmas associated with sickle cell disease (SCD).
Sickle Cell Speaks is designed to bring together a community of people, from patients to caregivers to friends and relatives, whose lives are affected by SCD. The campaign shares the individual experiences of those living with SCD through authentic stories from a diverse group of patients and caregivers. Sickle Cell Speaks aims to inspire hope by showcasing stories of strength and to dispel the misconceptions about SCD.
“The sickle cell patient experience is highly varied, and highlighting the personal stories of these individuals, as well as their family and friends, will help grow understanding and awareness of this condition,” said Beverly Francis-Gibson, president and chief executive officer of the Sickle Cell Disease Association of America. “We are proud to partner with GBT to help break down stigmas and make our voices heard.”
Additional partners of Sickle Cell Speaks include Sickle Cell Community Consortium, Sickle Cell 101, Bold Lips for Sickle Cell and Sickle Cell Warriors.
“We are partnering with several member organizations representing the sickle cell community to educate people about SCD and to help break down the barriers, particularly the misconceptions and social stigmas, that affect how those with SCD are viewed by society and which ultimately impact patients’ ability to access quality care,” said Ted W. Love, M.D., president and chief executive officer of GBT. “In addition to this patient-focused initiative, we recently launched a separate campaign aimed at engaging health care professionals and facilitating discussion around the root cause and molecular basis of the disease. Together, our patient and physician campaigns underscore GBT’s commitment to bringing together a broad range of stakeholders, with the goal of improving the lives of people living with sickle cell.”
GBT’s health care professional-focused disease awareness campaign, SCD Silent Damage, seeks to increase attention among physicians regarding hemoglobin polymerization, the molecular
basis of SCD that initiates the sickling of red blood cells and the ensuing cascade of clinical complications that drive high levels of morbidity and mortality in patients.
SCD is a rare, inherited disease that affects approximately 100,000 people in the United States. People of African descent make up 90 percent of this population, although it also affects people of Hispanic, South Asian, Southern European and Middle Eastern ancestry.1 Red blood cells are responsible for carrying oxygen throughout the body. In people with SCD, the normally round and flexible red blood cells become shaped like crescents because the hemoglobin within them polymerizes to form rods, which deform the cells. These rigid, crescent-shaped cells are not able to pass through small blood vessels and tend to break apart easily, leading to anemia, fatigue, episodes of pain and organ damage.  

New National Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait
 Sickle Cell Disease Association of America, Inc. (SCDAA) and BLACKDOCTOR.ORG are proud to announce a new media partnership that will enhance national awareness efforts about sickle cell disease (SCD). The partnership will use digital platforms, events and speaking opportunities to share educational information with individuals living with SCD and their families and the general public. The partnership will work to dispel myths about the disease and to share patient stories, treatment options, and initiatives happening within the sickle cell community. The partnership also will engage new audiences, create new media and public relations opportunities and help to break the silence surrounding the disease.
“SCDAA is very excited to announce this media partnership and the new opportunities we have together to help remove stigma and to share stories from those living with sickle cell disease,” said SCDAA President and CEO Beverley Francis-Gibson. “BLACKDOCTOR.ORG provides access to innovative new approaches to health information that helps individuals empower themselves by breaking through the health disparities and gaining better control of their health and well-being. SCDAA looks forward to working with BLACKDOCTOR.ORG to increase awareness about sickle cell disease and to encourage individuals to get involved in our efforts to advocate on behalf of those affected by this disease.”
“SCDAA and its chapters across the country have a long history of serving the sickle cell community through education, awareness and advocacy, and BLACKDOCTOR.ORG is proud to partner with them in our collective goals to empower individuals with their health by raising awareness about sickle cell disease,” said Reginald Ware, BLACKDOCTOR.ORG CEO. “Our media partnership seeks to help SCDAA broaden its reach into the African American community and to get people involved in an important cause. We are looking forward to supporting SCDAA and the sickle cell community in this collaborative initiative.”
About BLACKDOCTOR.ORG
BLACKDOCTOR.ORG is the all-important primary destination that redefines Black health. It aims to be a trusted, daily resource for healthier, happier living, and daily medicine. A Powerful Resource for Black Health BlackDoctor.org is the world’s largest and most comprehensive online health resource specifically targeted to African Americans. BLACKDOCTOR.ORG understands that the uniqueness of Black culture plays a role in our health. BLACKDOCTOR.ORG gives access to innovative new approaches to the health. Guided by the leading physicians, BLACKDOCTOR.ORG provides essential, but difficult to find, health resources, including free referrals to the top Black physicians and health articles that focus on both culturally accurate content and general health topics.  

On June 19, 2019, for World Sickle Cell Awareness Day, Novartis unveiled “The Untold Stories of Sickle Cell Disease,” a worldwide patient story project.
This unique program offers a powerful glimpse into the lives of people touched by sickle cell disease – how it affects their lives and how they work to overcome it. You can see and view the stories at www.UntoldSickleCellStories.com, along with disease education information.
You also can check out a 3-minute worldwide promo video at https://app.box.com/s/idrvk9nrr1fh97x5gr5ymw7iltpd2npa

Innovative Healthcare Programs for Sickle Cell Community
On June 10, 2019, Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) announced that five nonprofit organizations have been awarded more than $200,000 in grants through the company’s new Access to Excellent Care for Sickle Cell Patients Pilot Program (ACCEL).
Five grant recipients – the Center for Comprehensive Care and Diagnosis of Inherited Blood Disorders (CIBD) and the Sickle Cell Disease Foundation (SCDF), the James R. Clark Memorial Sickle Cell Foundation, The Johns Hopkins University School of Medicine, the MAVEN Project (Medical Alumni Volunteer Expert Network) and the Sickle Cell Foundation of Georgia – will each receive grants to accelerate the development of promising programs that have the potential over time to deliver high-quality healthcare to people living with sickle cell disease (SCD).
“We created the ACCEL program to help address the significant challenges that people living with SCD face every day in accessing quality healthcare in their communities. One solution to addressing these inequities is to encourage non-profit organizations to develop innovative programs that can ensure more children and adults living with SCD get access to high-quality care,” said Jung E. Choi, chief business and strategy officer, and head of patient advocacy and government affairs at GBT. “We are thankful to the many applicants who submitted compelling proposals.”
Click here to read more!  

Jordin Sparks is a Grammy-nominated, multi-platinum recording artist, but she also wants to spark a conversation about the emotional and social impact of sickle cell disease.
Sickle Cell Disease Association of America, Inc. thanks Jordin Sparks, for your commitment to increasing awareness about sickle cell disease! Click here to read an  article featuring Generation S spokesperson, Jordin Sparks.  

—The Access to Excellent Care for Sickle Cell Patients Pilot Program (ACCEL) Supports Novel Projects Aimed at Improving Access to High-Quality Healthcare for People with Sickle Cell Disease—

—GBT Will Fund Proposals With the Highest Potential to Impact Patient Care—

SOUTH SAN FRANCISCO, Calif. – Feb. 19, 2019 – Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) today announced the launch of the Access to Excellent Care for Sickle Cell Patients Pilot Program (ACCEL) to provide grant funding to support novel projects aimed at improving access to high-quality healthcare for sickle cell patients in the United States.

GBT will fund as many as three proposals up to $50,000 each to accelerate the development of promising programs with the potential over time to deliver high-quality healthcare to people living with sickle cell disease (SCD).

“Studies show that healthcare delivery to people living with SCD is typically suboptimal. For example, in the United States, fewer than 10 percent of Medicaid and Medicare patients living with SCD see a hematologist at least once per year and approximately 20 percent of SCD patients receive most of their care in the emergency room,” said Jung Choi, who oversees patient advocacy and government affairs at GBT. “We are excited to launch ACCEL to encourage the development of innovative solutions to provide underserved SCD patients with better access to high-quality care and support.”

ACCEL builds on discussions from the SCD Access to Care Summit sponsored by GBT and held in September 2018, during which healthcare providers and members of the sickle cell community discussed programs that are successfully working to address the significant gaps in healthcare delivery for both adults and children living with SCD. During the Summit, participants created draft roadmaps of these models to help disseminate best practices and to encourage the initiation of new SCD access-to-care programs.

Proposals will be reviewed by a panel of GBT personnel and external stakeholders with expertise in the issues affecting people with SCD. The panel will select as many as three proposals based on strength, degree of innovation and highest potential impact to patient care.

For more information about ACCEL, visit https://www.gbt.com/patients/accel-grant-program/ or email patientadvocacy@gbt.com.

About Sickle Cell Disease SCD is a lifelong inherited blood disorder caused by a genetic mutation in the beta-chain of hemoglobin, which leads to the formation of abnormal hemoglobin known as sickle hemoglobin (HbS). In its deoxygenated state, HbS has a propensity to polymerize, or bind together, forming long, rigid rods within a red blood cell (RBC). The polymer rods deform RBCs to assume a sickled shape and to become inflexible, which causes hemolytic anemia (low hemoglobin due to RBC destruction) that can lead to multi-organ damage and early death. This sickling process also causes blockage in capillaries and small blood vessels. Beginning in childhood, SCD patients typically suffer unpredictable and recurrent episodes or crises of severe pain due to blocked blood flow to organs, which often lead to psychosocial and physical disabilities.

About Global Blood Therapeutics

GBT is a clinical-stage biopharmaceutical company determined to discover, develop and deliver innovative treatments that provide hope to underserved patient communities. GBT is developing two therapies for the potential treatment of sickle cell disease, including its late-stage product candidate, voxelotor, as an oral, once-daily therapy. To learn more, please visit www.gbt.com and follow the company on Twitter @GBT_news.