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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!

 

Statement from SCDAA MARAC


February 16, 2021 – We are aware of the announcement today from bluebird bio regarding the temporary suspension of the clinical trials of its LentiGlobin Gene Therapy for Sickle Cell Disease (bb1111). We have investigated the situation, and we have met with bluebird bio to discuss the information available to the public. MARAC is monitoring developments, and we will continue to communicate our findings to the community of people living with sickle cell disease (SCD).
SCDAA honors the SCD warriors who volunteer in clinical research. They have given their time so that others may benefit from new future treatments and cures.
We pay tribute to all of those whom we have lost to SCD, as we know many have died too young. We understand that clinical research is the path for progress to improved survival in SCD.
Click here to view a full list of the SCDAA Medical and Research Advisory Committee Members and download this statement.
 

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.  

MARAC Advisory Statement: COVID-19 Vaccines

Download the MARAC Alert | Download Spanish Translation | Download French Translation
December 14, 2020 – News is evolving rapidly about COVID-19 and COVID-19 vaccines. Early results from the COVID-19 vaccine trials are very promising, although the true benefits and risks will not be known until a larger number of people receive the vaccine.
The Centers for Disease Control and Prevention (CDC) lists sickle cell disease (SCD) as one of the populations vulnerable to severe COVID-19. Sickle cell disease raises the risk for serious problems with COVID-19, especially when compared to the same age in the general population.
What about side effects?
Side effects from the vaccine are possible. Reported side effects include redness and soreness at the injection (shot) site, headache, fever and body aches. These side effect symptoms go away after a few days. The second injection may have more of these side effects than the first injection, but they also went away after a few days. Two severe allergic reactions were reported and seemed to occur only in people with a history of severe life-threatening allergies.
Based on current information, MARAC recommends that people with sickle cell disease receive COVID-19 vaccination.

  • The benefits of vaccination outweigh the risks for people with SCD. Vaccination is worthwhile compared to the risks of having COVID-19 disease in people with SCD.
  • Consult with your doctor or health care team about whether your personal medical condition causes an exception to this general recommendation. Key risk conditions for the vaccines made by Pfizer and Moderna (mRNA vaccines) are a history of life-threatening allergic reactions to polyethylene glycol
    (PEG), another vaccine or other injectable medicine.
  • The fact that SCD affects the immune system should not cause a safety problem for COVID-19 vaccines.
    If a clinical trial is available, consider joining so that we can understand how vaccines or treatments work best for people with SCD.
  • Don’t relax your precautions right after getting the vaccine. You might still get infected in the few weeks following vaccination. You could still give infection to those around you. Continue to wear a mask covering your nose and mouth. Wash your hands often. Maintain physical distance. Avoid crowds, and avoid people who are ill.

Frequently Asked Questions based on CDC information as of 12-13-2020
Is a booster dose of vaccine necessary? Can I get two doses of two different kinds of vaccine?
We don’t really know. The testing was done with two doses of each vaccine so that is the recommended plan. Getting just one dose or a mixture of two vaccines might be a waste of the shot and leave you with incomplete protection. The v-safe smartphone app will remind you when it is time to get the second dose.
If I had COVID-19 disease should I still get a vaccination against COVID-19?
Probably yes, but wait until your isolation period is over. Talk to your doctor.
If I just had COVID-19 exposure, should I still get a vaccination against COVID-19?
Probably yes, but after a quarantine period. Talk to your doctor. If you live in a group setting, it might be worthwhile to protect others by getting the vaccine without waiting for quarantine to end.
How is the safety of these vaccines being tracked?
v-safe is a smartphone-based tool that uses text messaging and web surveys to provide personalized health check-ins after you receive a COVID-19 vaccination. This will allow you to quickly share any vaccine side effects with the CDC.
I have some allergies. What allergy history is worrisome?

  • Key risk conditions for the mRNA vaccines are a history of life-threatening allergic reactions to components of the vaccine, to another vaccine or injectable medicine, or allergy to polyethylene glycol (PEG). Talk to your doctor. You might need to be deferred from the mRNA vaccine, or just monitored for 30 minutes after the injection.
  • Allergic reactions that were not life-threatening and allergies to food, insects, oral medications, dust, or pollen are probably OK for the mRNA vaccines. Talk to your doctor. You should be watched for at least 15 minutes after the vaccine.
  • Talk to your doctor.
  • Sign up for v-safe from your smartphone’s browser at vsafe.cdc.gov.

Click here to view a full list of the SCDAA Medical and Research Advisory Committee Members and download this advisory.
 

Sickle Cell Disease Association of America and Aruvant Sciences Forge New Partnership to Educate Around Gene Therapy

The Sickle Cell Disease Association of America (SCDAA) and Aruvant Sciences are proud to announce a new partnership to create educational programs to increase awareness of gene therapy as a potential curative treatment option for sickle cell disease patients. This collaboration will help SCDAA continue to deliver on its mission, while assisting Aruvant in learning more about the needs of sickle cell disease (SCD) patients. Under the agreement, Aruvant will collaborate with SCDAA to host local and national educational events and develop materials for a public-awareness campaign.
“In partnership with SCDAA, we are working to educate patients about gene therapy, while gaining critical insights from the patient community for our ARU-1801 SCD development program,” said Will Chou, M.D., chief executive officer (CEO) of Aruvant. “Now is a perfect time to work with SCDAA to educate the community about gene therapy since we have an open and enrolling phase 1/2 clinical trial for our potentially curative experimental gene therapy, ARU-1801.”
Sickle cell disease affects 100,000 individuals in the United States, disproportionately affecting African Americans with one in 500 African Americans suffering from the disease. This inherited disease affects the production of hemoglobin, a protein in red blood cells that carries oxygen throughout the body. The disease occurs when people inherit a mutation from each of their parents which causes people with SCD to not have normal, healthy adult hemoglobin in their red blood cells and instead have an abnormal hemoglobin called sickle hemoglobin. SCD can cause frequent episodes of severe pain, weakness and other serious complications. Fetal hemoglobin is an “anti-sickling” hemoglobin that is present before birth in the red blood cells. After birth, the gene that makes fetal hemoglobin turns off, which mostly stops the production of fetal hemoglobin. More fetal hemoglobin in the blood can mean fewer episodes of sickling and pain.
“In partnership with Aruvant, we can provide the critical education needed for our community to understand gene therapy and how these promising new treatments work to treat and maybe cure this genetic disease that impacts so many in our community,” said Beverley Francis-Gibson, SCDAA president and CEO. “Partnering with companies like Aruvant is critical to help us support the research that could change the lives of many sickle cell disease patients.”
Aruvant and SCDAA’s educational events will review gene therapy and ongoing research, including discussion around Aruvant’s MOMENTUM study. This clinical trial is examining a one-time investigational treatment, ARU-1801, to increase levels of fetal hemoglobin in patients with severe sickle cell disease, with the hope of fewer episodes of sickling and pain. Aruvant provided funding for SCDAA’s 48th Annual National Convention 2020 which begins tomorrow, October 13, and will continue through October 17. To register, please visit https://bit.ly/SCDAA2020Convention.
   

Sickle Cell Disease Association holds 48th annual national convention virtually

Sickle Cell Disease Association of America will hold its 48th annual national convention virtually this year from Tuesday, Oct. 13, through Saturday, Oct. 17. The four-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 Sickle Cell Disease Association. “There’s something for everyone at our convention this year.”
The keynote and honor lectures will be delivered by:

  • Baba Inusa is a professor of pediatric hematology with Evelina London and Guy’s and St Thomas’ NHS Foundation Trust in the United Kingdom. Inusa will present the Charles F. Whitten, M.D., Memorial Lecture: “Sickle Cell Newborn Screening for Africa Lessons: A Collaborative Initiative.”
  • Brett P. Giroir is an admiral with the U.S. Public Health Service and assistant secretary for health with the U.S. Department of Health and Human Services. Giroir will present the Clarice D. Reid, M.D., Lecture: “Charting a New National Course for Sickle Cell Disease.”
  • Cato T. Laurencin is a professor at the University of Connecticut and CEO of The Connecticut Convergence Institute for Translation in Regenerative Engineering at the University of Connecticut. Laurencin will present “The Interconnectedness of Race and Health: Calling a Spade a Spade.”

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 https://bit.ly/SCDAA2020Convention.  

Sickle Cell Disease Association of America Partners with HealthWell Foundation

New Fund Launches to Provide Financial Assistance to People with Sickle Cell Disease
Copayment and Premium Assistance Now Available
(April 15, 2020 – Hanover, MD)  –   The Sickle Cell Disease Association of America is proud to announce its partnership with the HealthWell Foundation®, an independent non-profit that provides a financial lifeline for inadequately insured Americans.  To support the sickle cell community, HealthWell has launched a new fund to provide copayment and premium assistance. Through the fund, HealthWell will provide up to $10,000 in financial assistance for a 12-month grant period to eligible patients who have annual household incomes up to 500 percent of the federal poverty level.
“We are excited that the HealthWell Foundation will provide much needed resources to individuals living with sickle cell disease during this difficult time. I am pleased that they are partnering with SCDAA to support the sickle cell community and reach as many individuals as possible,” says SCDAA President, Beverley Francis-Gibson.
“The HealthWell Foundation is proud to partner with the SCDAA to spread the word about this exciting new fund and to assist people living Sickle Cell Disease in accessing life-changing, sometimes lifesaving, medical treatments they otherwise would not be able to afford,” commented Krista Zodet, HealthWell Foundation President. “Thank you to our dedicated donors for recognizing this critical need and for helping us serve this patient community.”
To determine eligibility and apply for financial assistance, visit HealthWell’s Sickle Cell Disease Fund page. To learn how you can support this or other HealthWell programs, visit HealthWellFoundation.org
About the HealthWell Foundation
A nationally recognized, independent non-profit organization founded in 2003, the HealthWell Foundation has served as a safety net across over 70 disease areas for more than 500,000 underinsured patients. Since its inception, HealthWell has provided over $1.6 billion in grant support to access life-changing medical treatments patients otherwise would not be able to afford. HealthWell provides financial assistance to adults and children facing medical hardship resulting from gaps in their insurance that cause out-of-pocket medical expenses to escalate rapidly. HealthWell assists with the treatment-related cost-sharing obligations of these patients. HealthWell ranked 33rd on the 2019 Forbes list of the 100 Largest U.S. Charities and was recognized for its 100 percent fundraising efficiency. For more information, visit www.HealthWellFoundation.org.
 
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.
About SCD
SCD, an inherited blood disease, causes red blood cells to have a sickle shape. Because of their stiffness and unusual form, blood flow is blocked to different tissues, ultimately damaging them. These sickle-shaped red blood cells contain an abnormal type of hemoglobin, hemoglobin S; normal red blood cells have hemoglobin A. Hemoglobin is important because it helps carry oxygen throughout the body. There is currently no universal cure for SCD.
 
CONTACT:
Jacqueline Burrell
Director of Communications
JBurrell@sicklecelldisease.org