Category Archives: News

SCDAA Releases Comments on the CDC’s Opioid Guidelines

The Centers for Disease Control and Prevention (CDC) recently drafted an update to its guidelines for prescribing opioids and reached out to SCDAA for feedback. After decades of misinformation, poor guidance and systemic racism, which have created barriers for SCD patients to receive adequate care for pain, we urge the CDC to go further to support the sickle cell community’s needs for pain management. Read the full statement.  

SCDAA recognized for leadership

The Sickle Cell Disease Association of America received the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders. The annual award honors organizations that serve members with strong leadership in advocacy and education.

“We’re grateful for the recognition at the Sickle Cell Disease Association of America,” said Regina Hartfield, president and CEO of the association. “It wouldn’t have been possible without the dedication, hard work and unwavering commitment of the sickle cell community, including our sickle cell warriors, caregivers, staff from the national office and partners. They deserve all the praise.

The Sickle Cell Disease Association of America will receive the award during a live ceremony at the Rock & Roll Hall of Fame in Cleveland, Ohio, on June 26, 2022, during the National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum.

The National Organization for Rare Disorders is an independent advocacy organization representing all patients and families affected by rare diseases in the United States. Together with over 300 disease-specific member organizations, more than 17,000 advocates across all 50 states and national and global partners, the organization works to improve the lives of those impacted by rare diseases.

   

SCDAA names Regina Hartfield CEO

The Sickle Cell Disease Association of America (SCDAA) named Regina Hartfield as CEO and president effective Jan. 14, 2022. Hartfield has served on the association’s board of directors for three years, including as chair of the fundraising committee.

“Regina is an outstanding choice as our next CEO,” said Thomas Johnson, chair of the SCDAA board. “Her experience on the SCDAA board has provided her great insight into the organization’s strategy as well as the priorities of those SCDAA exists to serve, namely the individuals across America living with sickle cell disease and their families. Regina understands and appreciates the importance of keeping the individual with sickle cell disease and his or her needs at the forefront of SCDAA’s mission and daily purpose.”

Under Hartfield’s leadership as fundraising committee chair, the committee introduced the SickleTini virtual fundraiser, which paired education with interactive activities and provided new sponsorship opportunities. Hartfield initiated the development of the SCDAA’s 50th anniversary campaign creative brief, a marketing tool to steer the strategic fundraising goals. She also served as a member of the Member Organization Partnership Improvement ad hoc committee, working with the Executive Leadership Council president to develop an approach to member organization benefits, communication and inclusion strategies.

“I am excited and deeply honored to be stepping into this important role,” Hartfield said. “This is a pivotal time in SCDAA’s 50-year history. Awareness of sickle cell disease and its impact on those living with it or carrying the trait has never been greater. My time as an SCDAA board member, coupled with my longstanding experience in the nonprofit and for-profit worlds, enable me to bring a unique perspective to this role. I look forward to working with the incredible staff, the board and the member organizations on behalf of those impacted by sickle cell disease and related conditions.”

Prior to joining the Sickle Cell Disease Association of America, Hartfield was a manager for federal, state and commercial contracts for CVP, an information technology consulting firm in Virginia and Maryland. During her time at CVP, she developed strategic outreach initiatives, wrote strategy and implementation plans for the national expansion of a federal health agency’s program and managed a $30-million disaster recovery grant contract for the state of Tennessee, overseeing staff and operations of CVP’s regional office.

Previously, Hartfield was a community affairs professional in the nonprofit arena in New York for more than 25 years and brings experience as a leader in nonprofit organizations.

Hartfield was senior vice president for programs and outreach for the Prospect Park Alliance. As a member of the senior leadership team, she provided counsel, support and input on policy, program administration, capital projects and fiscal management issues. She oversaw the operation of five programs and managed a budget of $1.5 million. During her tenure, Hartfield guided her department through the development of its five-year strategic plan, supported the park’s development and fundraising efforts and served as spokesperson and park advocate.

She also served as community affairs and special project manager at Memorial Sloan-Kettering Cancer Center, where she provided leadership, direction and counsel to the cancer center’s senior management. Her relationships with community leaders, elected officials and other stakeholders resulted in increased funding, collaborative programming and a stronger presence in the community. Hartfield developed a cancer awareness community lecture series, which provided the community with access to the center’s top research and medical experts, as well as initiated and implemented cancer awareness outreach programs for children, survivors and youth.

Hartfield was the first community relations coordinator at The New York Botanical Garden. She instituted and managed outreach activities that increased audiences, encouraged diversity and built alliances. She initiated Bronx Day at the Garden, a program to encourage visitors from the garden’s home borough through free admission, entertainment from local artists and activities focused on botany and horticulture.

In addition, Hartfield serves on advisory boards and is a member of the Universal Sailing Club, where she has served on its board in different capacities. Hartfield graduated with honors from Lehman College of the City University of New York with a Bachelor of Arts in community outreach.  

SCDAA News Advisory: Salmonella and Sickle Cell Disease

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.

 

SCDAA launches clinical trial finder

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.”
 

SCDAA holds 49th annual national convention virtually

The Sickle Cell Disease Association of America will hold its 49th 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.
 

MARAC Advisory Statement Update About COVID-19 Vaccines

September 24, 2021 — News about COVID-19 continues to move quickly as we weather the pandemic. The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee provides the following updates on vaccination recommendations:

1. Individuals with SCD are now eligible for the third dose of the COVID-19 vaccine. The CDC recommends that people who are immunocompromised or have medical conditions with poor antibody production receive vaccine boosters. One of the eligible conditions is asplenia (no spleen function). Because of the relationship between asplenia and SCD, sickle cell patients are eligible to receive a third dose of the vaccine if they have already received the first two doses.

2. If you have not had the first dose of the vaccine, please do so as soon as possible. Nearly everybody is eligible to receive their first shot. Only children under age 12 or individuals with known allergies to the vaccine ingredients are ineligible. Thousands of individuals with SCD have now had the COVID-19 vaccine. Like the public, many had some side effects that went away after three days. Only a tiny number of individuals experienced sickle cell pain after their shot. A COVID-19 infection poses a great risk for people with SCD. The vaccine is a safe way to reduce that risk. To find a vaccine location near you, visit www.vaccines.gov.

To view a full list of MARAC members and to download this statement, click here.

GBT and Sickle Cell Disease Association of America to Host 10th Annual Sickle Cell Disease (SCD) Therapeutics Conference

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 10th 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 10th 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 10th 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
 
   

MARAC Issues Updated COVID-19 Guidance


August 26, 2021 – The Sickle Cell Disease Association of America Medical and Research Advisory Committee has released two statements with updated COVID-19 guidance.
MARAC recommendations are making a minor shift to emphasize a more individualized approach:

  • Continue to recommend vaccination against COVID. For booster dose of vaccine, currently SCD is not eligible but expect changes in CDC guidance.
  • Continue to recommend general precautions: wearing masks, keeping physical distancing, good ventilation, and washing hands. These are public health measures.
  • Recommend neutralizing monoclonal antibodies (mAb) – (Regeneron) as early treatment for mild symptomatic COVID in individuals with SCD [<10d after the test, age 12y+, wt 88 lb+ (40kg+), not hospitalized, not newly on oxygen]. Encourage getting tested if you have COVID symptoms. Possible prophylactic treatment with Regeneron antibodies if exposed to COVID.
  • No general recommendation for all individuals with SCD to stay home nor all to return to in-person activities. Help patients and families make individualized assessments of risk and trade-offs of returning to work or school in-person. Factors to consider were listed in MARAC July 2020 “checklist for return to school” (plus vaccination status): the community’s rates of COVID and variants, vaccination status, family socioeconomic situation, ventilation and other protective measures in the building, mental health needs, educational needs.

Read the full statement for more information on the above.
Additionally, MARAC recommends that people with sickle cell disease should have access to monoclonal antibody (mAbs) treatment according to established guidelines, to prevent mild COVID from progressing to severe disease. Read the full recommendations for providers, policy makers and patients.