Category Archives: Uncategorized

Women’s History Month: Dr. Marilyn Hughes Gaston

This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth 

Meet Dr. Marilyn Hughes Gaston, an internationally recognized leader in health care equality and sickle cell disease advocacy. Since 1976, she has dedicated her career to improving medical care for poor and minority families and has contributed to significant changes in the management of sickle cell disease. Despite facing racial and economic barriers, Dr. Gaston made history by publishing a groundbreaking study on sickle cell disease that led to a nationwide screening program for newborns. This initiative resulted in a significant reduction of morbidity and mortality in young children with the disease around the world. Let us acknowledge Dr. Gaston’s invaluable contributions to public health and unwavering commitment to bridging the gap of health disparities for all Americans.  

Women’s History Month: Dr. Yvette Francis-McBarnette

This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth 

Meet Dr. Yvette Francis-McBarnette, a Jamaican-born physician who specialized in treating children with sickle cell anemia. As one of the first Black women to graduate from the Yale School of Medicine, Dr. Francis-McBarnette was credited with successfully using antibiotics to treat children with sickle cell anemia 15 years before the effectiveness of those drugs were confirmed. Dr. Francis-McBarnette was also part of the White House advisory committee which made recommendations that led to the 1972 National Sickle Cell Anemia Control Act. Her contributions continue to inspire and impact the sickle cell community today. 

 

 

Women’s History Month: Dr. Helen M. Ranney

This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth

Meet Dr. Helen M. Ranney, physician and hematologist. Born in 1920, Dr. Ranney dedicated her work to researching blood disorders. Her groundbreaking work on sickle cell anemia included the first description of abnormal blood cell structure and genetic factors, earning her the Dr. Martin Luther King Jr. Medical Achievement Award in 1972. Dr. Ranney was also the first woman president of the Association of American Physicians. Let’s take a moment to celebrate Dr. Ranney for the work she has done on behalf of the sickle cell community!  

Women’s History Month: Dr. Angella Dorothea Ferguson

This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth

Meet Dr. Angella Dorothea Ferguson, a pediatrician and sickle cell pioneer. Born in 1925, Dr. Ferguson dedicated her life to researching sickle cell disease, an unknown condition at the time. Her groundbreaking work led to the development of a blood test for infants, which is now the standard in most states. 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!

 
 

#BlackHistoryMonthHeroes: Carlton Haywood Jr.

SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month to learn more about these inspiring individuals. 

#BlackHistoryMonth Meet the late Carlton Haywood Jr. – a trailblazer in the field of health equity and bioethics. Born with sickle cell disease, Carlton never let his illness hold him back. He was an all-star student and held many degrees, including a Ph.D. in Bioethics and Health Policy from the John Hopkins Bloomberg School of Public Health. His research, informed by his own experiences with SCD, earned him a competitive National Institutes of Health grant and recognition as a leader in his field. Despite the challenges he faced, Carlton’s unwavering spirit and passion for health equity and bioethics inspired many. His legacy will live on as a shining example of resilience and dedication.    

#BlackHistoryMonthHeroes: Dr. Kwaku Ohene-Frempong

SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month to learn more about these inspiring individuals. 

#BlackHistoryMonth Meet the late Kwaku Ohene-Frempong, M.D., – a renowned pediatric hematologist-oncologist and expert in sickle cell disease. Dr. Ohene-Frempong grew up in Ghana, where he excelled as a track-and-field athlete. He completed medical school and a residency in pediatrics, followed by a fellowship in pediatric hematology-oncology in the U.S. He dedicated his career to serving patients with sickle cell disease at Tulane University School of Medicine and the Children’s Hospital of Philadelphia. Upon retiring, he returned to Ghana to establish public health initiatives for SCD screening and treatment. Dr. Ohene-Frempong’s passion for improving the lives of those affected by sickle cell disease has left a lasting impact. His dedication to improving access to care, education and public health initiatives for SCD has inspired many to continue his work and carry on his legacy.   

#BlackHistoryMonthHeroes: Hertz Nazaire

SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month to learn more about these inspiring individuals. 
Meet the late Hertz Nazaire – a talented artist and author who used his brush to spread awareness about sickle cell disease. At just 9 years old, Hertz began honing his skills in NYC and later perfected his craft at The Art Institute of Fort Lauderdale and the University of Bridgeport. Known for his advocacy work and his “Finding Your Colors” adult coloring book series, Hertz was dedicated to using his art as therapy for those impacted by stress. Hertz lost his battle to sickle cell in late 2021, but his commitment to SCD advocacy and his impact on the art world will not be forgotten. 

 

Sickle Cell is Not a Joke

The Sickle Cell Disease Association of America, Inc., joins the Foundation For Sickle Cell Disease Research (FSCDR) in condemning the use of sickle cell disease (SCD) as a punchline on the HBO Max show Velma. For the over 100,000 Americans impacted by sickle cell and their families, this disease is anything but a laughing matter. Stereotypes and misinformation reinforced by media clips such as this have real-life consequences. Sickle cell patients struggle to be taken seriously and receive proper care, even when they present with life-threatening symptoms in the emergency room. As we work to change the perception of sickle cell and increase education surrounding this condition, insensitive and inappropriate jokes like these work against progress and contribute to the spread of misinformation. We must do better and encourage people to treat rare diseases with the respect they are due.

Click here to read the full statement from FSCDR. 

#SickleCellIsNotAJoke  

Midterm Election Outcomes and What they Mean for SCD

An update from John Otsuki, SCDAA government relations manager

As I am sure you’re aware, the United States recently completed a midterm election. All members of the House of Representatives were up for election or re-election, as they are every 2 years, as were 34 Senators (roughly 1/3 of the total). 

Before the election, the Democrats controlled both the Senate and the House, both by narrow margins. The 2020-2022 Senate was split 50–50*, with Vice President Kamala Harris breaking tie breakers, effectively giving the Democrats control, while the House was controlled by the Democrats 219 seats to 213 Republican seats. 

This November, the Democrats held the Senate, winning 50 seats to the Republicans 49. One race is going to a runoff in mid-December (GA). Regardless of the outcome, the Democrats will retain control, with Senator Chuck Schumer (D-NY) expected to remain as Majority Leader and Senator Mitch McConnell (R-KY) to remain as Minority Leader. In the House, the Republicans the Republicans have won 220 seats, while the Democrats have 213 seats. While two seats are still undecided, control of the House will flip to the Republicans. 

Once the results are finalized, the House of Representatives will elect a new Speaker of the House, which will certainly be a Republican. Who that will be remains undecided, with Rep. Kevin McCarthy (R-CA) as the front runner. The current Speaker of the House, Rep. Nancy Pelosi (D-CA), has stepped down from leadership. Representative Hakeem Jeffries (D-NY) has been elected as the new Minority Leader of the House. The new Congress will begin January 3, 2023. 

What does this mean for sickle cell disease?

The Republican flip of the House Representatives means that the chair and composition of every committee and subcommittee will change. That means the person deciding which pieces of legislation make it to and through committee and to the floor for a vote will change. Republicans have been open to working on sickle cell disease issues in the past, however, the number of supporters of SCD is drastically lower. Republicans are also less likely to support increased spending for any program. The current pending bills have price tags of $50 million to $535 million annually. Republicans are less likely to support these numbers in their current form. 

More importantly, the Senate will still be controlled by the Democrats and the Presidency will still be controlled by the Democrats. This means we will have divided government. As we have seen over the past 20 years, divided governments struggle to pass any meaningful legislation at all. Passing SCD legislation is about to become much more difficult. 

I hope this summary was helpful! 

-John Otsuki, SCDAA government relations manager

*The Democrats technically have two independents, Senators Angus King and Bernie Sanders, but both caucus and vote with the Democrats.