Over the past few months, more than 1,000 people in the U.S.A. and Canada were infected with a bacteria called Salmonella. The Centers for Disease Control and Prevention investigation can be read here.

“… red onions from Thomson International Inc., were the likely source of the outbreak. Other onion types (such as white, yellow, or sweet yellow) were also likely to be contaminated because the onions were grown and harvested together… On August 1, 2020, Thomson International Inc., recalled all red, yellow, white, and sweet yellow onions because they may be contaminated with Salmonella. Other companies also recalled onions or foods made with recalled onions. Consumers, restaurants, and retailers should not eat, serve, or sell recalled onions and products.”

Here is the Thomson International Inc. recall notice.

Here is the list of recalled products made with onions.

What is Salmonella infection?

Salmonella is a group of bacteria with many different types. The type responsible for most infections in humans is carried by chickens, cows, pigs, and pet reptiles (turtles, lizards, and iguanas). Most infections with Salmonella spread to people through contaminated food such as meat, eggs, and vegetables.

Why mention this now?

Salmonella can cause special problems in individuals with sickle cell disease and thalassemia: bone infection (osteomyelitis) or joint infection (septic arthritis) to include:

• Diarrhea, especially bloody diarrhea
• Fever for many days
• Prolonged pain in a bone or joint
• Can be multiple sites, often symmetrical
• Redness and swelling at the site of pain
• Treatment might require bone biopsy, weeks of antibiotics, and sometimes surgery

Why does this happen in sickle cell disease?

Most likely 3 reasons:

1. Sickle cell damage to the cells lining the gut allows Salmonella to enter the bloodstream more easily.
2. Sickle cell disease reduces the immune system’s ability to clear bacteria from the bloodstream.
3. The expanded bone marrow, due to high production of red cells and bone marrow sites damaged by lack of oxygen, are places where Salmonella bacteria can hide and grow.

Salmonella contamination is linked to poor sanitation.

What you can do

• If your household has onions or products with onions purchased in the summer, check whether they are on the recall list.
• If you have fevers and diarrhea, see your doctor promptly.
• If you have bone pain or joint pain with features different from your usual sickle cell pains (redness, swelling, lasting a long time, unusual site), see your doctor.
• Use good food-handling practices for meat, eggs, and vegetables.
• Cook food properly at recommended temperatures.
• Avoid touching pet reptiles.
• Avoid street food that may involve dishes made with raw onions.

HANOVER, Md.—The Sickle Cell Disease Association of America launched a sickle cell disease clinical trial finder, a centralized, simple-to-navigate website to help people with sickle cell disease, their families and caregivers find clinical trials.

Clinical trials help pharmaceutical companies collect data about the effectiveness and safety of sickle cell disease treatments and can provide participants with new treatments before they become widely available. Participants can use the clinical trial finder website to search for trials by keyword, location, study type and phase, now listed in one place.

“Until now, people with sickle cell disease had to search far and wide to find clinical trials,” said Beverley Francis-Gibson, president and CEO of the Sickle Cell Disease Association of America. “The clinical trial finder provides a one-stop shop for patients and their families to discover, learn about and connect with trials that are critical to discovering therapies and treatments for sickle cell disease.”
 

The Sickle Cell Disease Association of America will hold its 49^th annual national convention virtually this year from Tuesday, Oct. 12, through Saturday, Oct. 16. The five-day multidisciplinary convention addressing sickle cell disease and sickle cell trait draws hundreds of health care professionals, patients, families, community-based organizations, leaders and advocates.

“Our lineup of world-class speakers will present innovative and current best practice strategies and inspire and challenge our thinking about management and care and the latest scientific and clinical information about sickle cell disease,” said Beverley Francis-Gibson, president and CEO of the Sickle Cell Disease Association of America. “There’s something for everyone at our convention this year.”

The keynote and honor lectures will be delivered by:

• Kim Smith-Whitley is executive vice president and head of research and development at Global Blood Therapeutics, and Teonna Woolford is founder and CEO of The Sickle Cell Reproductive Health Education Directive. Woolford lives with sickle cell anemia. Smith-Whitley and Woolford will present the Charles F. Whitten, M.D., Memorial Lecture: “Sickle Cell and Access to Reproductive Health Services: An Advocate’s Perspective.”
• Gary H. Gibbons directs the National Heart, Lung and Blood Institute at the National Institutes of Health. Gibbons will present the Clarice D. Reid, M.D., Lecture: “Accelerating Innovative Treatments for Sickle Cell Disease.”

Additional convention events include business and grant meetings, exhibit hall presentations, advocacy lectures, clinical trial updates, educational workshops, medical reports, panel discussions, award presentations and social events. Participants will have the opportunity to connect and interact virtually with health care leaders and professionals and gain new relationships, knowledge and resources.

To learn more, see the convention program or register, visit www.sicklecelldisease.org/get-involved/events/annual-national-convention.
 

Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure to deliver keynote
SOUTH SAN FRANCISCO, Calif., and BALTIMORE – September 8, 2021 – Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) will host the 10^th Annual Sickle Cell Disease (SCD) Therapeutics Conference on Wednesday, September 15th. The virtual conference, which takes place during National Sickle Cell Awareness Month, is open to the public and will be livestreamed on the SCD Therapeutics Conference website and the Facebook page of Sickle Cell Warriors, an SCD community organization.
Chiquita Brooks-LaSure, Administrator for the Centers for Medicare & Medicaid Services (CMS) of the U.S. Department of Health and Human Services, will deliver the keynote address. A former policy official who played a key role in guiding the Affordable Care Act (ACA) through passage and implementation, Ms. Brooks-LaSure has decades of experience in the federal government, on Capitol Hill, and in the private sector.
“Progress in the treatment of sickle cell disease in recent years has provided hope and optimism for the future. But significant gaps in access to high quality care and other barriers continue to plague this community,” said Kim Smith-Whitley, M.D., executive vice president and head of research and development at GBT. “With this annual meeting now in its 10^th year, GBT is pleased to once again partner with the SCDAA and Sickle Cell Warriors to make this year’s conference possible – especially given the dramatic impact that the COVID-19 pandemic has had on people affected by SCD. We are inspired to convene such a diverse, passionate group of researchers, clinicians, patients, advocacy leaders, policy makers, industry representatives and others to address the complex challenges this community faces.”
The event will also feature sessions on a variety of critical topics, including the impact of the novel COVID-19 vaccines and the experiences of the SCD community with these vaccines.
The program will include panel discussions featuring leading physicians from around the world, patients, advocates, and policy makers, as well as updates from GBT’s 2021 Access to Excellent Care for Sickle Cell Patients (ACCEL) Grant recipients, who are focused on delivering high-quality healthcare to people living with SCD.
“In the past year, the COVID-19 pandemic has magnified the long-standing inequities faced by the sickle cell community and impacted the daily lives of so many people living with SCD. We are privileged to unite leaders from around the world on important and timely topics and create change for the better.” said Beverley Francis-Gibson, M.A., president and CEO of the SCDAA. “The conference will provide a much-needed forum for the broader SCD community to come together and discuss the urgent needs, latest advancements, and future possibilities as we imagine a better world for people with sickle cell disease.”
The 10^th Annual SCD Therapeutics Conference will feature the following speakers and panelists:

• Lewis Hsu, M.D., Ph.D., Chief Medical Officer, Director of the Sickle Cell Center and Professor of Pediatrics; Pediatric Hematologist, University of Illinois at Chicago
• Phyllis Arthur, M.B.A, Vice President, Infectious Diseases and Emerging Science Policy; Biotechnology Innovation Organization (BIO)
• Professor Baba Inusa, M.D., Lead Consultant Paediatric Sickle Cell and Thalassaemia, Evelina London Children’s Hospital; Guy’s and St Thomas NHS Trust, Women and Children’s Health; Faculty of Life Sciences & Medicine, King’s College London
• Clarisse Lopes de Castro Lobo, M.D., Instituto de Hematologia Arthur de Siqueira Cavalcanti (HEMORIO)
• Caterina P. Minniti, M.D., Professor, Departments of Medicine and Pediatrics, Albert Einstein College of Medicine
• Immacolata Tartaglione, M.D., Ph.D., Department of Woman, Child and General and Specialist Surgery, Università degli Studi della Campania “Luigi Vanvitelli”
• Derek Robertson, President, Maryland Sickle Cell Disease Association
• James Griffin, Speaker, Advocate & Author of Breaking Silence: Living With Sickle Cell Anemia
• Shanetta Richardson, Patient Advocate, US
• Chanel Taylor, Patient Advocate & Founder, Unsickle My Cells, UK
• Carolyn Rowley, Ph.D., Executive Director, Cayenne Wellness Center
• Emma Andelson, M.P.A., Program Manager, Sick Cells
• Lakiea Bailey, Ph.D., Executive Director, Sickle Cell Community Consortium
• Velvet Brown-Watts, M.S.W., Executive Director, Supporters of Families with Sickle Cell Disease
• Reginald French, Chief Executive Officer, The Sickle Cell Foundation of Tennessee

Multiple companies that are developing treatments for patients with SCD will present at the conference. They include Agios Pharmaceuticals, Bluebird Bio, Forma Therapeutics, GBT, Imara, Inc., and Vertex Pharmaceuticals/CRISPR Therapeutics.
For more information about the conference or to register to attend, visit http://www.scdconference.com.  Follow the conversation on Twitter using the hashtag #SCDTC.
About Sickle Cell Disease
Sickle cell disease (SCD) affects an estimated 100,000 people in the United States,¹ an estimated 52,000 people in Europe,² and millions of people throughout the world, particularly among those whose ancestors are from sub-Saharan Africa.¹ It also affects people of Hispanic, South Asian, Southern European and Middle Eastern ancestry.¹ SCD is a lifelong inherited rare blood disorder that impacts hemoglobin, a protein carried by red blood cells that delivers oxygen to tissues and organs throughout the body.³ Due to a genetic mutation, individuals with SCD form abnormal hemoglobin known as sickle hemoglobin. Through a process called hemoglobin polymerization, red blood cells become sickled – deoxygenated, crescent-shaped and rigid.^3-5 The sickling process causes hemolytic anemia (low hemoglobin due to red blood cell destruction) and blockages in capillaries and small blood vessels, which impede the flow of blood and oxygen throughout the body. The diminished oxygen delivery to tissues and organs can lead to life-threatening complications, including stroke and irreversible organ damage.^4-7
 
About Global Blood Therapeutics
Global Blood Therapeutics (GBT) is a biopharmaceutical company dedicated to the discovery, development and delivery of life-changing treatments that provide hope to underserved patient communities. Founded in 2011, GBT is delivering on its goal to transform the treatment and care of sickle cell disease (SCD), a lifelong, devastating inherited blood disorder. The company has introduced Oxbryta^® (voxelotor) tablets, the first FDA-approved treatment that directly inhibits sickle hemoglobin polymerization, the root cause of red blood cell sickling in SCD. GBT is also advancing its pipeline program in SCD with inclacumab, a P-selectin inhibitor in Phase 3 development to address pain crises associated with the disease, and GBT021601 (GBT601), the company’s next-generation hemoglobin S polymerization inhibitor. In addition, GBT’s drug discovery teams are working on new targets to develop the next wave of potential treatments for SCD. To learn more, please visit www.gbt.com and follow the company on Twitter @GBT_news.
About SCDAA
SCDAA’s mission is: To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. Visit www.sicklecelldisease.org.
References

1. Centers for Disease Control and Prevention website. Sickle Cell Disease (SCD). https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed June 3, 2019.

1. European Medicines Agency. https://www.ema.europa.eu/en/medicines/human/orphan-designations/eu3182125. Accessed June 12, 2020.
2. National Heart, Lung, and Blood Institute website. Sickle Cell Disease. https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease. Accessed August 5, 2019.
3. Rees DC, et al. Lancet. 2010;376(9757):2018-2031.
4. Kato GJ, et al. Nat Rev Dis Primers. 2018;4:18010.
5. Kato GJ, et al. J Clin Invest. 2017;127(3):750-760.
6. Caboot JB, et al. Paediatr Respir Rev. 2014;15(1):17-23.

# # #
Contact:
Steven Immergut (media)
650.410.3258
simmergut@gbt.com
Courtney Roberts (investors)
650.351.7881
croberts@gbt.com
SCDAA Contact Information:
Emma Day
eday@sicklecelldisease.org
Kyri Jacobs
kjacobs@sicklecelldisease.org
 
   

Sickle Cell Disease Association of America named John Otsuki as government relations manager. Otsuki brings experience in regulatory and legislative affairs, government relations and strategic planning.
Prior to joining the Sickle Cell Disease Association of America, Otsuki was a government relations manager at Jones Walker LLP, where he maintained relationships with members of Congress and government agencies, executed regulatory processes, developed protocols and prepared reports on regulatory and legislative affairs. He previously served as a legislative analyst and research and administrative assistant at the law firm and as a legislative intern for a member of Congress.
Otsuki holds a Bachelor of Arts in political science from Auburn University.  

Sickle Cell Disease Association of America (SCDAA) named 14-year-old Ayana Lee Johnson the 2021-2023 SCDAA National Teen Ambassador. She was selected through a nationwide competition formerly known as the Poster Child Contest that started in 1976. Her reign will begin with an official coronation during SCDAA’s Annual National Convention Oct. 12-16.

In her role as SCDAA National Teen Ambassador, Johnson will make public appearances and act as an emissary, assisting with education campaigns and securing public and private sector support for the SCDAA mission. She will serve as a goodwill ambassador for SCDAA and be a positive role model for teens and other individuals living with sickle cell disease.

“SCDAA is thrilled with the selection of Ayana as our new Teen Ambassador,” said SCDAA President and CEO Beverley Francis-Gibson. “Her determination to fight for other SCD warriors and raise awareness of what it is like to live with sickle cell disease to anyone who will listen, along with her sparkling personality, are just a few reasons why she was chosen. She is resilient and determined not to be limited or defined by SCD.”

Johnson is an honors student at Nansemond River High School in Suffolk, Virginia, and she attends the Governor’s School of the Arts. She is a competitive dancer with many national titles and has been accepted into summer intensives with both the Dance Theatre of Harlem and the Joffrey Ballet School. Johnson also plays violin and competes in pageants. She currently holds the title of Miss America’s Outstanding Teen Piedmont Region 2020-2021.

“Sickle cell disease does not define me,” said Johnson. “I am a warrior living my best life.”

Johnson was featured in Suffolk News Herald’s 20 Under 21, and among her many accomplishments, she is the recipient of the St. Peter Claver Service and Sickle Cell Activism Award; the Making the Difference – Sickle Cell Champion Warrior Award and Scholarship; and the 2019 Excellence Girls Club Pioneer Award. In 2020-2021, she completed 200 volunteer hours, some of them working as an American Red Cross Blood Drive escort and greeter.