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HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA)

HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA)
SCDAA’s mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to raise awareness and maximize patient quality of life.
(CRANBURY, N.J. – September 7, 2021) – HCPLive®, a multimedia platform dedicated to providing physicians with up-to-date specialty and disease-specific information to help them offer the best patient care, is thrilled to announce the addition of the Sickle Cell Disease Association of America (SCDAA) to its Strategic Alliance Partnership (SAP) program.
“The addition of the Sickle Cell Disease Association of America to our SAP program will allow us to further collaborate on initiatives that will positively impact the industry,” said Mike Hennessy Jr., president and CEO of MJH Life Sciences™, parent company of HCPLive®. “With a mission of advocating to raise awareness and maximize patient quality of life, SCDAA’s goals align directly with ours as a publication.”
As a leader in promoting and advancing initiatives focused on people affected by sickle cell conditions worldwide, SCDAA and its affiliate organizations pursue national health care objectives while demonstrating how community-based organizations can work. After more than 45 years, SCDAA continues to recognize how critical it is to raise awareness and gain support for both the social and public health aspects of sickle cell disease.
SCDAA’s national efforts focus on six broad areas:

  • Research
  • Public Health Education
  • Professional Health Education
  • Patient Services
  • Community Services
  • Support to Global Organizations and Practitioners

The SAP program builds a community of advocacy groups, medical associations, and medical institutions to foster collaboration and an open exchange of information among trusted peers, for the ultimate benefit of patients and their families. As part of this joint effort, HCPLive® will work with the partners to share exclusive information and improve patient outcomes. 
For the full list of HCPLive® SAP partners, click here. 
About HCPLive®  
HCPLive® is a comprehensive clinical news and information portal that provides physicians and other health care professionals with up-to-date specialty- and disease-specific resources to help them deliver better care to patients. Readers have access to breaking news, video interviews with physician experts, in-depth conference coverage, finance and practice management updates, insights and analysis from physician contributors and other resources. HCPLive® is a brand of MJH Life Sciences™, the largest privately held, independent, full-service medical media company in North America, dedicated to delivering trusted health care news across multiple channels.  
HCPLive®Media Contact  
Alyssa Scarpaci, 609-716-7777 
ascarpaci@mjhlifesciences.com   

The Hibiscus Study is Enrolling Volunteers

Study Title:
An adaptive, randomized, placebo-controlled, double-blind, multi-center study of oral FT-4202, a pyruvate kinase activator, in patients with sickle cell disease (SCD).
Study Description:
The Hibiscus Study™ is evaluating the safety and effectiveness of an investigational medication compared with placebo (inactive drug) in people 12 to 65 years of age with SCD. The study is evaluating if the investigational medication can improve anemia and reduce the number of pain crises per year.
Eligibility Criteria:
Eligible participants must:

  • Be 12 to 65 years of age
  • Have a confirmed diagnosis of SCD
  • Have had at least 2 pain episodes (vaso-occlusive crises) within the past 12 months
  • Not have had more than 10 vaso-occlusive crises within the past 12 months
  • Be willing and able to follow all study requirements and study visit schedules

There are additional eligibility requirements, which the study doctor will explain to you. To learn more about study participation, and to see if you or someone you know may qualify, visit HibiscusSC.com or call 844-608-0808 to complete the prescreening questionnaire.  

Walk with the Stars to support Sickle Cell Disease Association of America

Sickle Cell Disease Association of America will hold the eighth annual Walk with the Stars fundraiser, where participating teams and individuals can track their walk, run, dance or movement steps while raising funds to support the association in preventing the complications of sickle cell disease through awareness, education, advocacy and research.
Walk with the Stars will kick off May 22 at 10 a.m. with a Facebook Live event and culminate in a virtual Walk with the Stars celebration July 10 from 9 to 11 a.m., recognizing participants’ steps and success.
“Join family members, loved ones, friends and co-workers for Walk with the Stars to help support a universal cure for sickle cell disease,” said Beverley Francis-Gibson, president and CEO of Sickle Cell Disease Association of America. “Walking, running and moving for Walk with the Stars not only benefit participants but will change the lives of those affected by sickle cell disease. Together we can break the sickle cycle.”
Sickle Cell Disease Association of America has raised a total of over $500,000 through Walk with the Stars to support better treatments and improvements in the quality of health for individuals, families and communities affected by sickle cell disease.
To learn more and register for Walk with the Stars, visit bit.ly/SCDAAwalk2021. Sponsorships are available by emailing bfrancis-gibson@sicklecelldisease.org.  

Black History Month: Dr. Roland Scott

For our final #SCDHistoryHighlight of Black History month, we are excited to reflect on the life and work of Dr. Roland Scott. Dr. Scott has been celebrated as the “father of sickle cell disease” in the United States, and completed groundbreaking research as he advocated for his patients during a time of intense discrimination.
Dr. Scott was born in 1909 and graduated with his medical degree from Howard University in 1934. He spent the majority of his career in the pediatrics department of Howard University. During this time, he began to notice the high number of African American children in the emergency room experiencing sickle cell symptoms and complications. Dr. Scott was a trained allergist, but he switched his focus to help improve treatment for this misunderstood disease. A compassionate pediatrician, Dr. Scott held office hours in the evenings during which he would see African American children and families who were discriminated against and denied access to medical treatment.
Dr. Scott would go on to publish hundreds of articles on sickle cell disease during his time at Howard University. Although he did not specialize in hematology, in 1948 Dr. Scott published a paper on the sickling of red blood cells in newborns. This paper paved the way to a better understanding of sickle cell disease and laid the groundwork for newborn screening as we know it today.
In addition to being a dedicated researcher, Dr. Scott was a fierce advocate for sickle cell disease. His advocacy played a large role in the federal government’s passing of the Sickle Cell Anemia Control Act of 1971, which ensured nationwide funding for the research and treatment of sickle cell disease. In 1972, Dr. Scott founded the Howard University Center for Sickle Cell Disease, which continues to conduct research and provide care to sickle cell patients today. Dr. Scott’s work and advocacy changed the landscape for sickle cell disease, and we owe so much of our capability to treat and understand sickle cell to his efforts.

 

Black History Month 2021: Dr. Angella Dorothea Ferguson

We’re excited to continue our celebration of Black history this week by highlighting the life and work of Dr. Angella Dorothea Ferguson, a pediatrician and sickle cell pioneer. Dr. Ferguson’s research changed the landscape for sickle cell diagnosis in children and made a huge impact on how we identify and treat SCD to this day.
Dr. Ferguson was born in 1925 and received her bachelor’s and medical degrees from Howard University. After graduation, she began work as a medical researcher at Howard University’s School of Medicine, where she aimed to gather data correlating the height and weight of children with age. While completing this research, she discovered that a large number of African American children suffered from sickle cell disease, which, at the time, was a fairly unknown condition. She changed gears and committed her time to understanding how the disease presents itself in children. In doing so, she became one of the first researchers to dedicate her studies to sickle cell.
Dr. Ferguson’s research had lasting impacts on how sickle cell is diagnosed and treated. She developed a blood test to diagnose the disease in infants, and her test is the standard in most states to this day. Thanks to her research, we better understand which symptoms to look for in children and can start treating sickle cell earlier. Thanks to Dr. Ferguson for the work she has done on behalf of our community!

 

SCDAA Celebrates Black History Month 2021

Sickle cell disease plays an important role in black history, and vice versa. This month, we will highlight African American sickle cell pioneers to learn more about our community’s history.
 
Our first #SCDHistoryHighlight shines a light on the life and work of our co-founder Dr. Charles F. Whitten. Dr. Whitten was a pediatric hematologist whose dedication to supporting the health of sickle cell patients paved the way for advances in screening, education and more. His pioneering work makes him one of the most important figures in sickle cell history.
 
Dr. Whitten is widely celebrated to this day for his dedication to sickle cell screening. In 1974, he established the Sickle Cell Detection and Information Center in Detroit, Michigan. The center was the most comprehensive community program in the country at the time. During his time at the center, Dr. Whitten educated children and families about sickle cell disease and created color-coded dice to teach couples about the genetic risks of the condition.
 
Prior to founding the Sickle Cell Detection and Information Center, Dr. Whitten practiced medicine for many years as a faculty member of Wayne State University School of Medicine. Dr. Whitten was dedicated to increasing the representation of African American physicians in the medical field, and created a post-baccalaureate program that graduated almost 300 students of color by it’s 30th anniversary.
 
Dr. Whitten understood the urgency of creating a national effort to address sickle cell disease, and was crucial to founding SCDAA. He also founded the Sickle Cell Disease Association of America of Michigan, which remains one of SCDAA’s original member organizations. SCDAA thanks Dr. Whitten for all he did to advance the treatment of sickle cell disease and make medicine more equitable for providers and patients. His place in our history is well deserved.

 

SCDAA promotes Kevin Amado Jr.

Sickle Cell Disease Association of America promoted Kevin Amado Jr. to community impact and engagement manager. Amado joined the association last year with 16 years of experience as a health educator, case manager, community health worker and certified health insurance navigator.
As community impact and engagement manager, Amado will develop and implement community health worker training programs and identify community resources for health workers, organizations and members of the sickle cell community. In addition, he will coordinate Sickle Cell Disease Association of America programs and efforts in communities nationwide.
“I hope to share my knowledge and experience with new up-and-coming community health workers. Throughout my years of working in the community, I have learned so much, not only through hands-on experience, but from those who came before me and passed on their wisdom to me,” Amado said. “I’m an advocate for the communities I serve, believing all have the right to self-advocacy, self-determination and self-actualization.”
Prior to joining the Sickle Cell Disease Association of America, Amado served as a case manager for Health Care Access Maryland’s Certified Navigator Connector Program. He was a community health worker with Healthy Howard and a senior health education specialist with the Virginia Department of Health. He has held other social services positions in Maryland and Virginia.
Amado holds a Master of Public Administration from University of Baltimore and a Bachelor of Science in community health education from Morgan State University. He lives in Baltimore.  

Novartis Adakveo approved by FDA for Sickle Cell Disease


New Novartis medicine Adakveo® (crizanlizumab-tmca) approved by FDA to reduce frequency of pain crises in individuals living with sickle cell disease

  • Sickle cell pain crises are unpredictable, severe events associated with life-threatening complications1
  • Adakveo reduced the annual rate of sickle cell pain crises by 45% compared to placebo (1.63 vs 2.98) and the annual rate of days hospitalized (4 vs 6.87) in a 52-week study2
  • Approximately 100,000 people in the United States, most of whom are of African descent, have sickle cell disease3
  • Approval comes approximately two months ahead of FDA’s priority review action date, allowing Adakveo to be available to patients more quickly

East Hanover, NJ, November 15, 2019 – Novartis announced today that the US Food and Drug Administration (FDA) approved Adakveo® (crizanlizumab-tmca), previously known as SEG101, to reduce the frequency of vaso-occlusive crises (VOCs), or pain crises, in adult and pediatric patients aged 16 years and older with sickle cell disease.4 Adakveo represents the first FDA-approved medicine in sickle cell disease that binds to P-selectin – a cell adhesion protein that plays a central role in the multicellular interactions that can lead to vaso-occlusion.5,6 The medicine is expected to be available to patients in the coming weeks.
The FDA’s decision to approve Adakveo 5 mg/kg is based on results of the 52-week, randomized, placebo-controlled SUSTAIN trial, which showed that Adakveo significantly lowered the median annual rate of VOCs to 1.63 vs 2.98 compared to placebo (P=.010), which is equivalent to a 45% reduction. Reductions in the frequency of VOCs were observed among patients regardless of sickle cell disease genotype and/or hydroxyurea use.2,4
“We know this drug can decrease the frequency of sickle cell pain crises in a significant and clinically meaningful way,” said Kenneth Ataga, MD, Director, Center for Sickle Cell Disease, University of Tennessee Health Science Center at Memphis, and Principal Investigator of the SUSTAIN trial. “The approval of crizanlizumab is an important advancement for people living with this very difficult condition.”
Additional results from the SUSTAIN study include:4

  • A decrease in the median annual rate of days hospitalized to 4 vs 6.87 days when compared with placebo (a 42% reduction)
  • Thirty-six percent of patients treated with Adakveo did not experience a VOC, compared to 17% of placebo-treated patients
  • The median time to first VOC was 4.1 for Adakveo vs 1.4 months for placebo

The most common adverse reactions (incidence > 10%) were nausea (18%), arthralgia (18%), back pain (15%) and pyrexia (11%).4
“The approval of Adakveo marks a new era in the treatment of sickle cell disease, a genetic condition that places an extraordinary burden of unpredictable pain crises on patients and their families,” said Susanne Schaffert, PhD, President, Novartis Oncology. “The stories we have heard from patients about their sickle cell pain crises are devastating. We are pleased to help reimagine medicine together with the sickle cell community and offer new hope for fewer VOCs.”
Considered the clinical hallmark of the disease, sickle cell pain crises are triggered, in part, by multicellular interactions that form clusters of cells, which can block or reduce the blood flow to organs.1,7 Sickle cell pain crises can be frequent and sudden, and are associated with an increased risk of life-threatening complications.1 They also are the main reason why individuals living with sickle cell disease go to the emergency room and are admitted to the hospital.7
“Patients with sickle cell disease often face unique challenges, and have long suffered silently through unimaginable pain crises,” said Beverley Francis-Gibson, President and CEO of the Sickle Cell Disease Association of America. “We are excited to have a new medicine that may help many of the thousands of people living with sickle cell disease by reducing the frequency of these potentially dangerous and painful episodes.”
About Sickle Cell Disease
Sickle cell disease is a complex and debilitating genetic blood disorder that goes beyond sickle-shaped red blood cells. The disease is associated with chronic inflammation, causing higher levels of cell adhesion proteins, including P-selectin, which make both the blood vessels and certain blood cells stickier and prone to multicellular interactions, or clusters, in the bloodstream. This environment can lead to the acute episodes of pain known as sickle cell pain crises, or VOCs, as well as life-threatening complications.1,7,8 VOCs are the main reason why individuals living with sickle cell disease seek medical care in hospitals,7 leading to approximately 200,000 ER visits in the US every year.9,10
Approximately 100,000 people in the US have sickle cell disease.3 People of African ancestry make up 90% of the population with sickle cell disease in the US. However, sickle cell disease is also prevalent among people of Hispanic, South Asian, Southern European, and Middle Eastern ancestry. Sickle cell disease occurs in about 1 in 365 and 1 in 16,300 African-American and Hispanic-American births, respectively.3
About Adakveo
Adakveo® (crizanlizumab-tmca) – previously known as SEG101 – is indicated to reduce the frequency of VOCs, or pain crises, in adults and pediatric patients aged 16 years and older with sickle cell disease. It is the first and only targeted biologic that works by binding to P-selectin, a cell adhesion protein that plays a central role in the multicellular interactions that can lead to vaso-occlusion in sickle cell disease.
By binding to P-selectin on the surface of the activated endothelium and platelets, Adakveo blocks interactions between endothelial cells, platelets, red blood cells, and leukocytes.4
About SUSTAIN
SUSTAIN is a randomized, multicenter, placebo-controlled, double-blind study. A total of 198 patients with any genotype of sickle cell disease (HbSS, HbSC, HbS/beta0-thalassemia, HbS/beta+-thalassemia, and others) and a history of 2-10 VOCs in the previous 12 months were eligible for inclusion. Patients were randomized 1:1:1 to Adakveo 5 mg/kg (N = 67), Adakveo 2.5 mg/kg (N = 66), or placebo (N = 65) administered over a period of 30 minutes by intravenous infusion on Week 0, Week 2, and every 4 weeks thereafter, for a treatment duration of 52 weeks.
The primary efficacy outcome was the annual rate of VOCs leading to a healthcare visit. A VOC leading to a healthcare visit was defined as an acute episode of pain with no cause other than a vaso-occlusive event that required a medical facility visit and treatment with oral or parenteral opioids, or parenteral NSAIDs. Acute chest syndrome, hepatic sequestration, splenic sequestration, and priapism (requiring a visit to a medical facility) were also considered VOCs. Key secondary and other efficacy endpoints include annual rate of days hospitalized, time to first VOC leading to healthcare visit, and number of patients that did not experience a VOC.
Patient Access and Support
Novartis is committed to helping ensure that our medicines are accessible to as many patients as possible. With the approval of Adakveo in the United States, we now offer resources and support to address a range of needs. Adakveo Support at PANO (Patient Assistance Now Oncology) is a support center staffed by insurance specialists and case managers who can help eligible patients start and stay on treatment. Dedicated support specialists are available to help direct callers to services that best fit their needs. Patients or providers can call 800-282-7630 or visit Patient.NovartisOncology.com or HCP.Novartis.com/Access to learn more about eligibility and to enroll.
Novartis Commitment to Sickle Cell Disease in Africa
Sickle cell is a global disease and is most widespread in sub-Saharan Africa. Unfortunately, we can see a clear disparity when comparing Africa with other parts of the world, where sickle cell is often managed as a chronic disease. Building on years of engagement in Africa, working to reduce the impact of malaria and other conditions, Novartis is taking steps to help address the needs of sickle cell patients as well, beginning in Ghana. Our partnership with the Ghana Ministry of Health, the Ghana Health Service, and the Sickle Cell Foundation of Ghana aims to improve the diagnosis and treatment of people with sickle cell disease through a comprehensive approach to screening and diagnosis, treatment and disease management, training and education, and elevating basic and clinical research and scientific capabilities. These activities include facilitating access to high-quality hydroxyurea and other basic medicines to enhance the standard of care.
To date, Novartis has delivered more than 20,000 hydroxyurea treatments to Ghana, with plans to deliver a total of 60,000 treatments by the end of the year. In addition, Novartis is developing a child-friendly formulation of hydroxyurea and is committed to implementing two clinical trials with crizanlizumab in Ghana and Kenya – an important step to bringing this innovative medicine to patients. Crizanlizumab trials in Africa are expected to start in 2020.
Indication
Adakveo® (crizanlizumab-tmca) is used in people 16 years of age and older, who have sickle cell disease, to help reduce how often certain episodes of pain (crises) happen. It is not known if Adakveo is safe and effective in children under 16 years of age.
Important Safety Information
Adakveo may cause serious side effects, including infusion reactions. Infusion reactions may happen within 24 hours of receiving an infusion of Adakveo. Patients should tell their health care provider right away if they get any of the following signs and symptoms of an infusion reaction such as fever, chills or shivering, nausea, vomiting, tiredness, dizziness, sweating, hives, itching, or shortness of breath or wheezing. Health care providers may monitor their patients for signs and symptoms of infusion reactions.
Adakveo may interfere with automated platelet counts (platelet clumping). Patients should tell their health care provider that they are receiving Adakveo before having any blood tests. Health care providers should run blood samples as soon as possible or use tubes containing citrate.
Before receiving Adakveo, patients should tell their health care provider if they are pregnant or plan to become pregnant. It is not known if Adakveo may harm an unborn baby.
The most common side effects (incidence ≥10%) include nausea, back pain, joint pain, and fever.
Please see full Prescribing Information for Adakveo at https://wpdemo12.com/wp-content/uploads/2024/01/adakveo.pdf.
Disclaimer
This press release contains forward-looking statements within the meaning of the United States Private Securities Litigation Reform Act of 1995. Forward-looking statements can generally be identified by words such as “potential,” “can,” “will,” “plan,” “expect,” “anticipate,” “look forward,” “believe,” “committed,” “investigational,” “pipeline,” “launch,” or similar terms, or by express or implied discussions regarding potential marketing approvals, new indications or labeling for the investigational or approved products described in this press release, or regarding potential future revenues from such products. You should not place undue reliance on these statements. Such forward-looking statements are based on our current beliefs and expectations regarding future events, and are subject to significant known and unknown risks and uncertainties. Should one or more of these risks or uncertainties materialize, or should underlying assumptions prove incorrect, actual results may vary materially from those set forth in the forward-looking statements. There can be no guarantee that the investigational or approved products described in this press release will be submitted or approved for sale or for any additional indications or labeling in any market, or at any particular time. Nor can there be any guarantee that such products will be commercially successful in the future. In particular, our expectations regarding such products could be affected by, among other things, the uncertainties inherent in research and development, including clinical trial results and additional analysis of existing clinical data; regulatory actions or delays or government regulation generally; global trends toward health care cost containment, including government, payor and general public pricing and reimbursement pressures and requirements for increased pricing transparency; our ability to obtain or maintain proprietary intellectual property protection; the particular prescribing preferences of physicians and patients; general political and economic conditions; safety, quality or manufacturing issues; potential or actual data security and data privacy breaches, or disruptions of our information technology systems, and other risks and factors referred to in Novartis AG’s current Form 20-F on file with the US Securities and Exchange Commission. Novartis is providing the information in this press release as of this date and does not undertake any obligation to update any forward-looking statements contained in this press release as a result of new information, future events or otherwise.
About Novartis
Novartis is reimagining medicine to improve and extend people’s lives. As a leading global medicines company, we use innovative science and digital technologies to create transformative treatments in areas of great medical need. In our quest to find new medicines, we consistently rank among the world’s top companies investing in research and development. Novartis products reach more than 750 million people globally and we are finding innovative ways to expand access to our latest treatments. About 109,000 people of more than 140 nationalities work at Novartis around the world. Novartis Pharmaceuticals Corporation, a US affiliate of Novartis, is located in East Hanover, NJ. Find out more at www.novartis.com.
Novartis is on Twitter. Sign up to follow @Novartis at http://twitter.com/novartisnews and follow @NovartisCancer at https://twitter.com/NovartisCancer
For Novartis multimedia content, please visit www.novartis.com/news/media-library
For questions about the site or required registration, please contact media.relations@novartis.com
References

  1. Steinberg M. Management of sickle cell disease. N Engl J Med. 1999;340(13):1021-1030.
  2. Ataga KI, Kutlar A, Kanter J et al. Crizanlizumab for the prevention of pain crises in sickle cell disease. N Engl J Med. 2017;376(5):429-439.
  3. American Society of Hematology. State of sickle cell disease 2016 report. http://www.scdcoalition.org/pdfs/ASH%20State%20of%20Sickle%20Cell%20Disease%202016%20Report.pdf. Accessed October 24, 2019.
  4. Adakveo (crizanlizumab) prescribing information. East Hanover, New Jersey, USA. Novartis Pharmaceuticals Corporation; November 2019.
  5. Rees DC, Williams TN, Gladwin MT. Sickle-cell disease. Lancet. 2010;376(9757):2018-2031.
  6. Lawrence MB, Springer TA. Leukocytes roll on a selectin at physiologic flow rates: distinction from and prerequisite for adhesion through integrins. Cell. 1991;65(5):859-873.
  7. Gutsaeva D, Parkerson J, Yerigenahally S, et al. Inhibition of cell adhesion by anti–P-selectin aptamer: a new potential therapeutic agent for sickle cell disease. Blood. 2011;117(2):727-735.
  8. Sparkenbaugh E, Pawlinski R. Interplay between coagulation and vascular inflammation in sickle cell disease. Br J Haematol. 2013;162(1):1-22.
  9. Ballas SK, Gupta K, Adams-Graves P. Sickle cell pain: a critical reappraisal. Blood. 2012;120(18):3647-3656.
  10. Yusuf HR, Atrash HK, Grosse SD, Parker CS, Grant AM. Emergency department visits made by patients with sickle cell disease: a descriptive study, 1999-2007.Am J Prev Med. 2010;38(Suppl):S536-S541.

Novartis Global External Communications
E-mail: media.relations@novartis.com  

Donate Blood to Support Sickle Cell Patients

September is Sickle Cell Awareness Month; Red Cross blood and platelet donations needed for patients
This school year students battling sickle cell disease and childhood cancers prepare to face challenges in the classroom unknown to their healthy peers. Many will fall behind in coursework after missing weeks of school, require tutoring and special education services. But there is a way people can help ease the struggle of these serious diseases.
September is Sickle Cell Awareness Month, making it a great time to donate blood. The Red Cross, Sickle Cell Disease Association of America, Inc., and the Sickle Cell Foundation of Georgia, Inc. formed a partnership last year to increase blood donations to support the SCD community. Over the five-year partnership, the goal is to collect 15,000 blood donations. Donations like these are essential to students living with SCD who rely heavily on lifesaving blood and platelet donations from generous and diverse donors, to help keep them in the classroom. Schedule an appointment to give blood with the American Red Cross by visiting RedCrossBlood.org, using the Red Cross Blood Donor App, calling 1-800-RED-CROSS or activating the Blood Scheduling Skill for Amazon Alexa.
“Sickle cell disease and childhood cancer profoundly impact the lives of young people— ensuring there is a diverse and sufficient blood supply is critical to their survival and ability to get back to school,” said Dr. Yvette Marie Miller, executive medical director at the Red Cross. “The Red Cross encourages diverse blood donors to roll up a sleeve this September and throughout the year to help the many diverse patients in need of blood each day.”
Blood type, like eye color, is an inherited trait passed genetically from parents. The vast majority of blood types fall into one of the major ABO groups, but for some patients with rare blood types, blood must be matched closely, beyond the primary A, B, O and AB blood types, to reduce the risk of developing complications from transfusion therapy. A patient in need is more likely to find a compatible blood match from a donor of the same race or ethnicity.
Students with sickle cell disease admit it impacts performance
A recent study conducted by researchers from Cincinnati Children’s Hospital Medical Center and University of Cincinnati College of Medicine indicates that 60% of participants reported that sickle cell disease interfered with their school performance and over 75% of participants diagnosed with the most severe sickle cell form reported receiving special education services due to absences.
Regular blood transfusions are one of the most common treatments for sickle cell disease, which have been proven to help patients by unblocking blood vessels, alleviating pain from a sickle cell crisis. Many patients require transfusions multiple times per year throughout their lifetime.
Braden Green suffered from Acute Chest Syndrome, the leading cause of death in sickle cell patients and needed blood transfusions to survive. During his recovery he missed six weeks of school and depended on instructors to help him get caught up.
His mom, Brenda Green, recalls watching the donated blood enter her son’s body. “I realized at that moment how important a blood donation is.” She vowed to become an advocate for blood donations and has since hosted several blood drives for patients in need.
“If it hadn’t been for that blood transfusion, I am not sure where we would be today.”
Blood donation information
All blood types are needed to ensure a reliable supply for patients. A blood donor card or driver’s license or two other forms of identification are required at check-in. Individuals who are 17 years of age in most states (16 with parental consent where allowed by state law), weigh at least 110 pounds and are in generally good health may be eligible to donate blood. High school students and other donors 18 years of age and younger also have to meet certain height and weight requirements.
Blood and platelet donors can save time at their next donation by using RapidPass® to complete their pre-donation reading and health history questionnaire online, on the day of their donation, before arriving at the blood drive. To get started, follow the instructions at RedCrossBlood.org/RapidPass or use the Red Cross Blood Donor App.
About the American Red Cross:
The American Red Cross shelters, feeds and provides emotional support to victims of disasters; supplies about 40 percent of the nation’s blood; teaches skills that save lives; provides international humanitarian aid; and supports military members and their families. The Red Cross is a not-for-profit organization that depends on volunteers and the generosity of the American public to perform its mission. For more information, please visit redcross.org or cruzrojaamericana.org, or visit us on Twitter at @RedCross.  

GBT and SCDAA to Host 8th Annual Sickle Cell Disease (SCD) Therapeutics Conference

GlobalBlood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) announced that they will host the 8th Annual Sickle Cell Disease (SCD) Therapeutics Conference on Tuesday, September 10, 2019, at The Westin Washington, D.C. U.S. Representative Robin Kelly, chair of the Congressional Black Caucus Health Braintrust, will deliver the keynote address.
Taking place during National Sickle Cell Awareness Month, the SCD Therapeutics Conference will highlight the latest medical advances and future trends in the treatment of patients with SCD. In addition to Rep. Kelly’s keynote address, the program will feature panel discussions and presentations from leading physicians, patient advocates and healthcare policymakers on a range of issues and topics, including the impact of SCD on the brain and cognitive function and hot topics in SCD from the perspective of patients and caregivers. The Conference will also feature updates from the American Society of Hematology Research Collaborative’s SCD Clinical Trials Network and the Sickle Cell Community Consortium, as well as presentations from biopharmaceutical industry leaders.
“We are honored to host, in partnership with the Sickle Cell Disease Association of America, the annual SCD Therapeutics Conference for the third year in a row, as it will bring together patient advocates, opinion leaders and clinical experts,” said Ted W. Love, M.D., president and chief executive officer of GBT. “Support and collaboration across the broader community is essential as we work together to try to fundamentally transform how SCD is treated. We are optimistic that this year’s Conference will spur important discussions as we continue to pursue our shared mission of making a meaningful difference in the future of SCD care.”
“As co-hosts of the annual SCD Therapeutics Conference, we are thrilled to help advance meaningful discussions aimed at understanding and addressing the needs of the SCD community,” said Beverley Francis-Gibson, B.A., M.A., president and chief executive officer of SCDAA. “It is necessary that we continue to learn and grow based on the latest advancements that will be discussed at the Conference, in addition to understanding future issues and trends for treating patients with SCD.”
The 8th Annual SCD Therapeutics Conference will feature the following speakers and panelists:

  • Biree Andemariam, M.D., Associate Professor, Department of Medicine, University of Connecticut
  • Lakiea Bailey, Ph.D., Founder, Sickle Cell Community Consortium
  • Velvet Brown-Watts, Founder-Chairperson, Supporters of Families with Sickle Cell Disease
  • Chuck Chesson, Ph.D., Director, Sickle Cell Disease Clinical Trials Network
  • Jew-EL Darbone, Sickle Cell Patient Advocate
  • Jeremie Estepp, M.D., Medical Director, Clinical Translation Program in Hematology, St. Jude Children’s Research Hospital
  • Beverley Francis-Gibson, B.A., M.A., President and Chief Executive Officer, SCDAA
  • André Harris, CHW, Sickle Cell Patient Advocate
  • The Honorable Robin Kelly, Chair, Congressional Black Caucus Health Braintrust, United States House of Representatives
  • Allison King, M.D., M.P.H., Ph.D., Associate Professor of Occupational Therapy, Pediatrics, Medicine, Surgery (Prevention and Control) and Education,
  • Washington University School of Medicine
  • Hertz Nazaire, Sickle Cell Patient Advocate
    Additionally, multiple companies that are developing treatments for patients with SCD will present at the Conference. They include Addmedica, CRISPR Therapeutics/Vertex, Cyclerion, Emmaus Life Sciences, GBT, Imara and Sanofi. To ensure that those who are unable to attend the Conference can benefit from the presentations and information sharing, GBT is collaborating with Sickle Cell Warriors, an SCD community organization, to livestream from the Conference on the organization’s Facebook page at www.facebook.com/SickleCellWarriors. Following the event, GBT will post videos on its corporate YouTube channel. For more information about the Conference or to register to attend, visit http://www.scdconference.com.