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.
Author Archives: Emma Day
In Memory of Dr. Kwaku Ohene-Frempong
We are devastated to learn of the death of Dr. Kwaku Ohene-Frempong on Saturday, May 7, 2022. Dr. Ohene-Frempong was a true leader in the sickle cell community and dedicated his life and career to working with SCD. He held many roles on the Sickle Cell Disease Association of America board of directors over the years, including chief medical officer, board chair and board member emeritus. He also sat on the SCDAA Medical and Research Advisory Committee. His presence will be sorely missed in our organization and in the community at large.
Dr. Ohene-Frempong was born in Ghana, and his record of excellence as a student-athlete earned him a scholarship to Yale to study pre-med and later, a trip to the Olympics representing Ghana in track and field. He received his medical degree from the Yale School of Medicine in 1975. While finishing his degree, his son became the first baby diagnosed with sickle cell disease by Dr. Howard Pearson in the pioneering newborn screening program at Yale in 1972. His firsthand experience with sickle cell and newborn testing motivated him to dedicate his life and career to studying and advocating for sickle cell.
In the United States and all over the world, Dr. Ohene-Frempong was a leading pediatric sickle cell physician. He was director emeritus of the Comprehensive Sickle Cell Center at The Children’s Hospital of Philadelphia, emeritus professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and president of the Sickle Cell Foundation of Ghana.
His landmark analysis of stroke in the Cooperative Study of Sickle Cell Disease showed the high rates of stroke in children from blocked blood flow and high rates of stroke in adults that were from bleeding aneurysms. He also pioneered a newborn screening and follow-up program in Kumasi, Ghana, where one in 50 babies have sickle cell disease. It has been a beacon and training center for sickle cell care and research in Africa. Dr. Ohene-Frempong founded the Sickle Cell Foundation of Ghana and was a founding member of the Global Sickle Cell Disease Network.
To learn more about Dr. Ohene-Frempong’s outstanding life, we encourage you to listen to this podcast episode about his story.
We will greatly miss Dr. Ohene-Frempong’s dedication, passion and intelligence. We will share more information about services as they are announced. Our sincerest condolences go out to his friends and family.
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.
MARAC Advisory: COVID-19 and Sickle Cell Disease
March 2022 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee notes that news about COVID-19 continues to emerge. Monitor your state or local health department for more information. Below are some updates and suggestions for individuals with sickle cell disease.
Several studies have examined the effects of COVID-19 infection in individuals in the sickle cell community and shown concerning results to include:
- Individuals with sickle cell disease do have higher risks for severe COVID-19 disease and hospitalization compared to those of the same age without sickle cell disease. Poor kidney function raises the risk for severe COVID-19. A blood flow problem in the lungs called pulmonary hypertension also raises the risk for severe COVID-19.
- COVID-19 infection often triggers sickle vaso-occlusive pain in adults. This type of crisis can cause the most intense pain an individual with sickle cell has ever experienced.
- COVID-19 infection can also trigger sickle acute chest syndrome. Not everyone gets the same problems and children might have mild cases, but severe disease and death are unpredictable.
- The American health care system has not solved the issues of racial and ethnic disparities in health
during the pandemic. People of color have a higher risk of COVID-19 complications and are dying from COVID-19 at younger ages.
The positive news is:
- The risk of death from COVID-19 for those with sickle cell disease is not as high as the risk of death from COVID-19 in patients who are receiving an organ transplant or are in active chemotherapy for cancer.
- Sickle cell trait does not present a higher risk of severe COVID-19 or death.
The COVID-19 vaccine is safe, and the vaccine’s risks to individuals with sickle cell disease are very low when compared to the risks of a COVID-19 infection.
COVID-19 vaccines have now been given to tens of thousands of people with sickle cell disease across many countries for at least 14 months. People with sickle cell report about one to two days of side effects, which is about the same as reports from the general population.
SCDAA MARAC members have found that very rare cases of sickle cell pain have been reported after vaccination for COVID-19.
ACTIONS YOU CAN TAKE
- Stay up to date with your COVID-19 vaccines.
- If you feel comfortable wearing a mask, you can. You are at risk. Don’t be bullied.
- Continue medications and preventive care for sickle cell disease.
- Seek care when needed. Do not delay getting care for your medical condition. Health care professionals have infection prevention plans to help protect you from getting COVID-19 if you need care. If you have sickle cell disease and do not have a regular doctor, we strongly recommend that you connect with one.
- Keep up with your state or local health department for more information.
TEST SOON AND TREAT EARLY (CDC infographic in English and Spanish)
- Americans can request free COVID-19 tests mailed to your home. To learn more, visit COVIDtests.gov.
- If you have symptoms that are suspicious for COVID-19, take a home COVID-19 test or get tested in a medical facility.
- Several treatment options are now available for an individual with sickle cell disease who tests positive for COVID-19. Treatments can prevent a mild infection from leading to severe disease, hospitalization or death. Click here to learn more. Ask your doctor or pharmacist for the treatment that is used for your location, age and medical condition.
This statement has been provided by members of the Sickle Cell Disease Association of America’s Medical and Research Advisory Committee.
SCDAA partners with Phi Beta Sigma Fraternity
The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell disease and raise funds to support education about the negative effects of sickle cell disease on the physical, economic and social well-being of individuals with the condition.
“SCDAA is excited to again partner with the Phi Beta Sigma Fraternity, and we are honored to have been chosen as a recipient of their donations,” said Regina Hartfield, president and CEO of SCDAA. “Phi Beta Sigma is deeply committed to serving and supporting the community, as is SCDAA. Their support will go far to benefit those living with sickle cell disease.”
The partnership will support the SCDAA and sickle cell community through raising funds, mobilizing blood and bone marrow drives and collaborating to educate the community about sickle cell disease and sickle cell trait. Phi Beta Sigma Fraternity will encourage chapters to collaborate with their local American Red Cross to host blood drives and the Be The Match Registry to host bone marrow drives. Chapters will conduct screenings to help adolescents and adults detect sickle cell and organize fundraisers for sickle cell research, education and children’s services.
“SCDAA is proud to continue its partnership with Phi Beta Sigma in raising awareness about sickle cell disease,” said Thomas L. Johnson, chair of the SCDAA board of directors. “Its dedication to the mission of SCDAA is exemplary of providing support and assistance for those in need.”
Phi Beta Sigma Fraternity was founded at Howard University in Washington, D.C., in 1914 to exemplify the ideals of brotherhood scholarship and deliver services to the general community. The fraternity’s motto is “Culture for Service and Service for Humanity.”
“This disease effects one out of every 365 Black or African-American births and one out of every 16,300 Hispanic-American births,” said Chris Rey, president of the fraternity. “Phi Beta Sigma is dedicated to doing all we can to change these grim numbers. We are excited to continue our partnership with SCDAA to continue to fight for a cure.”
SCDAA Celebrate Black History Month: Prodigy
Our final #BlackHistoryMonth highlight is dedicated to rapper and sickle cell warrior Albert “Prodigy” Johnson, one-half of the iconic 90’s rap duo Mobb Deep. Prodigy was born in the 1970s to a family of musicians and was diagnosed with sickle cell SS at three months old. He grew up in Queens, New York City, and formed Mobb Deep with his partner Kejuan “Havoc” Muchita while attending the High School of Art and Design in Manhattan. They released their breakthrough album “The Infamous” in 1995, which is widely recognized as a hip-hop classic.
Mobb Deep’s street-smart rap style and emotionally charged lyrics are credited with the renaissance of the East Coast hip-hop scene. Mariah Carey, Jordan Knight, Kanye West and Jay Z have all sampled tracks from the group.
Prodigy made music with Mobb Deep and on a solo basis until the mid-2010s. He lost his battle to sickle cell in 2017, but his music lives on. Hear what he had to say about living with sickle cell in this 2011 interview.
SCDAA Celebrates Black History Month: Paul Williams
Meet Paul Williams, one of the founding members of the legendary Motown group The Temptations. Williams began singing as a kid with Eddie Kendricks in their church choir in Birmingham, Alabama. The two pursued music careers as members of various groups, eventually moving to Detroit to join Otis Williams, Melvin Franklin and Elbridge Bryant as The Temptations.
With Williams on board, the group released many hits, including “My Girl.” Williams was considered the best dancer in the group and choreographed many of their moves. He also served as the original choreographer for The Supremes. His battle as a sickle cell warrior was hidden from the public, and his health issues eventually caused him to leave the group. Williams’ indelible impact helped cement The Temptations’ place in history as one of the greatest vocal groups in modern times and trailblazers in the evolution of R&B and soul music.
SCDAA Celebrates Black History Month: Billy Garrett, Jr.
Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back.
Meet Billy Garrett Jr., the first known person with sickle cell disease to play in the NBA. Billy grew up in Chicago, playing competitive basketball despite words of caution from his doctors. To keep playing, Garrett learned to balance hydration, rest and exertion through a process of trial and error that would occasionally lead to crises. His passion and dedication carried him through these obstacles and onto the court as a member of the DePaul Blue Demons, the New York Knicks and the Lakeland Magic. Off the court, we’re honored to have him on our team as one of our celebrity ambassadors. Hear his story and how he learned to play despite the pain.
SCDAA Celebrates Black History Month: Miles Davis
Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back.
We kick off our celebration recognizing world-renowned jazz artist Miles Davis. He struggled with health issues – arthritis, hip-joint problems and pneumonia – but wasn’t diagnosed with sickle cell disease until middle age. He began playing the trumpet at age 13 and at 18 convinced his parents to allow him to move to New York City to study at the prestigious Juilliard School. It was a ploy so he could jam with the musical masters of his day and join the band of his idol, Charlie Parker. He was soon leading his own projects and bands, solidifying a career that spanned decades. His album “Kind of Blue” is one of the most successful and influential jazz albums in history. He passed away in 1991, but his music lives on. Take some time to listen to his music today and pay tribute to this influential sickle cell warrior.