Category Archives: Uncategorized

#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. 

 

NFL players spotlight Sickle Cell Disease Association of America

The NFL’s My Cause My Cleats campaign features players showcasing important causes on their cleats each year during Week 13 games in early December.

Tevin Coleman’s Cleats

San Francisco 49ers running back Tevin Coleman and Arizona Cardinals linebacker Markus Golden will support the Sickle Cell Disease Association of America through the NFL’s My Cause My Cleats program by wearing custom-designed cleats with inspirational artwork and messages to raise awareness and engagement around sickle cell disease.

“We’re thrilled and grateful to Tevin and Markus for recognizing the Sickle Cell Disease Association of America on their cleats this year,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “The visibility and support mean so much to us and the thousands of families living with sickle cell disease across the country.”

Coleman is an eight-year veteran running back in the NFL. For him, supporting the Sickle Cell Disease Association of America means supporting his daughter.

“As the father of a child who lives with sickle cell disease, I know how important it is for people affected by sickle cell to receive the high-quality health care and support they need and deserve. I’m proud that my cleats this year will help support the Sickle Cell Disease Association of America and also recognize the strength of my daughter, Nazaneen, who inspires me every day,” Coleman said. “Together with my wife, Akilah, our hope is that by raising awareness and connecting people to this amazing organization, we will help more individuals and families battling this condition to live well and thrive.”

Off the field, Tevin and Akilah Coleman partner with Pfizer to advocate for sickle cell disease and share their family’s story at SickleCellSpeaks.com. Pfizer partners with the Sickle Cell Disease Association of America to advance education and awareness of sickle cell disease.

Coleman worked with footwear artist and designer Dan Gamache, known as “Mache,” to create cleats honoring those who inspire his commitment to help improve the lives of people with sickle cell. The cleats include the name of Coleman’s 5-year-old daughter, Nazaneen, and her favorite animal, a purple butterfly, alongside sickle cell imagery in the style of Hertz Nazaire, a renowned artist and sickle cell warrior. The cleats will also feature the Sickle Cell Disease Association of America’s logo and a unifying hashtag, #SickleCellMatters.

A Sickle Cell Disease Association of America celebrity ambassador, Golden grew up in St. Louis, graduated from the University of Missouri and was selected by the Arizona Cardinals in the 2015 NFL draft. He has featured the Sickle Cell Disease Association of America and sickle cell causes on his cleats in past years.

“Sickle cell disease is a condition that’s often forgotten, but it profoundly affects so many families across the country,” Golden said. “I lost my cousin Jonah at only 10 years old to the disease, and that’s why I’m so driven to bring attention to sickle cell and the Sickle Cell Disease Association of America on my cleats this year. I’m proud to once again partner with such an important organization to support people with sickle cell. I hope every step I take on the field is a step toward finding a cure for sickle cell.”

The NFL will auction Golden’s and Coleman’s cleats on the league’s website after the Week 13 games. Auction proceeds will support the Sickle Cell Disease Association of America.  

Frequently Asked Questions about SCT in Newborn Screening

Many people have questions about sickle cell trait after newborn screening. Dr. Lewis Hsu, SCDAA chief medical officer, answers some of the FAQs below.

Can this test be wrong?

The standard process for newborn screening is that a result showing sickle cell trait will be followed up with another blood test – so two tests will be done. A newborn screening result without any trait will not get a follow up blood test. The newborn screening result is usually correct, and the state labs have quality controls built in. However, issues outside of the lab can make the newborn screening process miss sickle cell trait, for example, if the baby was prematurely born, if the baby got a blood transfusion before the test, if there were problems handling the sample, or if there were errors in entering follow-up contact information.

How do I ask for a confirmation test?

If you would like to be certain about whether your older children have sickle cell trait or not, ask their doctor to order a blood test called “hemoglobin fractionation” or “hemoglobin electrophoresis.” Based on your knowledge that someone in the family has sickle cell trait, this test should be covered by your child’s medical insurance. If you run into barriers for that testing, some local sickle cell organizations (members of SCDAA) offer sickle cell testing free of charge.

Please give me quick information about sickle cell trait.

See this SCDAA brochure with the highlights of information about sickle cell trait – this is exactly what I give my patients, except that it is customized with local resource contact information. The main health concern for sickle cell trait is that the sickle gene can be passed along to the next generation.

Where can I go deeper on what sickle cell trait means for health? I want to know about everything.

The best source for more detailed and up-to-date information about sickle cell trait is this Sickle Cell Trait Toolkit. It was jointly created by the Centers for Disease Control and Prevention, the American Society of Hematology and SCDAA.  

New Publications Emphasize Inequities in Pediatric SCD Care

This week, two new publications call attention to the barriers to care children with SCD face. Prioritizing Sickle Cell Disease, an article co-authored by SCDAA Chief Medical Officer Lewis Hsu for the American Academy of Pediatrics, is a call to action within the medical community to work together to maximize available screenings and treatments. The Centers for Disease Control and Prevention’s newly released Vital Signs publication, Preventing Sickle Cell Anemia Complications in Children, reports fewer than 50% of children 2-16 years old received the recommended screening for stroke in 2019. Both publications identify racism and discrimination as barriers to quality care and potentially lifesaving preventative measures for children with SCD.

Click here to read Prioritizing Sickle Cell Disease.

Click here to read Preventing Sickle Cell Anemia Complications in Children.  

Tools for Sickle Cell Awareness Month You Don’t Want to Miss

September is Sickle Cell Awareness Month. Check out these helpful tools and learn more about how to support sickle cell warriors!

For Schools

For Employers

For Emergency Medicine

For Hospitalists

For Blood Transfusion

About Sickle Cell Trait

For Advocacy

Looking for more? Visit oneSCDvoice’s Sickle Cell Awareness Month resources for even more links and tools!  

Member Organization Sickle Cell Awareness Month Events 2022

Join an SCDAA member organization at one of these great events this September!