As Black History Month ends, we would like to look to the future for our final #SCDHistoryHighlight at the amazing work organizations across the country are doing to create a safer environment for our community. We’ve seen many landmark decisions and groundbreaking treatments in the more than 50 years since SCDAA’s founding, but one thing has remained true throughout – that our member organizations are the key to our progress.

We currently have 57 member organizations that serve sickle cell warriors, caregivers and community members across 30 states. We define our membership into three categories:

• Direct Service Agency – These organizations provide support including but not limited to: Case management, testing and screening, counseling and/or medical home assistance.
• Support Service Agency – These organizations provide support including but not limited to: Medical bill assistance, transportation, career counseling/planning, medical co-pay, funeral/burial, assistance, housing, clothing, food, SSI/Disability, insurance application assistance.
• Advocacy Service Agency – These organizations provide support including but not limited to: Disseminating SCD/SCT information, attending health fairs and participating and/or host local advocacy events.

We deeply value the work of our CBOs, and we work collaboratively across the country to affect positive change at the national, state and local levels. We join together in Washington, D.C., during our Advocacy Days events to raise our voices and ensure that our community-based organizations’ representatives understand the issues facing the sickle cell community. Our member organizations also coalesce during our Annual National Convention in October to support each other in their goals and grow their missions.

All told, our member organizations collectively serve over 500,000 children and adults living with sickle cell and their caregivers. These organizations are our boots on the ground, taking dreams and making them realities. As we step into the future, we look to these groups to steer the next era of sickle cell history. Click here to meet our member organizations.  

After our founding, one of SCDAA’s earliest goals was to ensure the National Sickle Cell Anemia Control Act of 1972 was passed. With our early member organizations in tow, Dr. Whitten and the association began to advocate for this landmark piece of legislation. Our #SCDHistoryHighlight this week looks at why this act was so important for moving sickle cell treatment and research forward.

During the 1960s, the civil rights movement brought many issues of racial inequality, including health care disparities, to the foreground. As greater attention was paid to these differences in treatment, access and research, awareness of sickle cell disease increased. More people began to recognize the urgent need for better care and advocate for those improvements.

The National Sickle Cell Anemia Control Act of 1972 was introduced in the senate at the end of 1971 and passed into law the next year. It authorized the establishment of the first federal programs promoting sickle cell education, counseling, research, treatments and voluntary screening. The National Sickle Cell Disease Program of the National Heart, Lung and Blood Institute of the National Institutes of Health was implemented, and federally funded Comprehensive Sickle Cell Centers were established.

Without this crucial piece of legislation, and the tireless advocacy that helped to pass it, sickle cell disease treatment and research would not be where it is today. The National Sickle Cell Anemia Control Act of 1972 created the necessary foundation to which we owe a great deal of progress. Its passage is a testament to the power of community action and advocacy as we continue to make #SickleCellHistory!

Last week, we learned about the origins of the Sickle Cell Disease Association of America, Inc. (SCDAA) and the vision for a national coordinated approach to addressing sickle cell disease. This week, our #SCDHistoryHighlight draws attention to the important community-based organizations that joined us in our fight and served as our foundation.

During the summer of 1971, the vision for SCDAA – National was formed during a meeting with the 15 member organizations that would soon become our original member organizations. Many of these groups were providing essential support and services to their communities for years prior to this meeting. Each organization offered key perspectives on our shared needs and strategies for reaching our goals. Before too long, SCDAA grew to include other early member organizations, including:

• SCDAA State Association (Alabama)
• SCDAA Mobile Chapter (Alabama)
• SCDAA San Diego (California)
• SCDAA Connecticut Chapter
• SCDAA Florida State Association
• SCDAA Dade County Chapter (Florida)
• SCDAA Escambia (Florida)
• SCDAA Northeast Florida
• SCDAA St. Petersburg Chapter (Florida)
• Uriel Owens Sickle Cell Disease Association of the Midwest (Kansas)
• SCDAA – Northwest Louisiana Chapter
• SCDAA Michigan Chapter
• SCDAA Kansas City (Missouri)
• SCDAA Metro St. Louis (Missouri)
• SCDAA Buffalo & Western New York
• SCDAA South Piedmont (North Carolina)
• SCDAA Eastern North Carolina
• SCDAA Ohio Sickle Cell and Health Association
• SCDAA Oklahoma
• SCDAA – Philadelphia/Delaware Valley Chapter (Pennsylvania)
• SCDAA Texas State Association
• SCDAA Dallas (Texas)
• SCDAA Ft. Worth (Texas)
• SCDAA Texas Gulf Coast (Texas)
• SCDAA San Antonio (Texas)

While some of these organizations have changed their names and others have closed, many are still working to advance progress in their communities today. Organizations like,  the SCDAA Mobile Chapter, SCDAA Connecticut (now known as Michelle’s House), SCDAA Escambia and Santa Rosa Counties, SCDAA St. Petersburg Chapter, SCDAA Dade County Chapter, Sickle Cell Disease Association of Florida, Uriel Owens Sickle Cell Disease Association of the Midwest, SCDAA Northwest Louisiana Chapter, SCDAA Michigan Chapter, Ohio Sickle Cell and Health Association and SCDAA – Philadelphia/Delaware Valley Chapter remain committed SCDAA member organizations – over 50 years later.

Our member organizations have always been crucial to our mission. As our boots on the ground, they do incredibly important work that is tailored to the communities they serve. Each of these member organizations holds a well-deserved place in SCDAA history.

Editas Medicine recently announced that they will be making a strategic transition to a in vivo gene editing company. The company intends to develop a transformative in vivo medicine for the treatment of sickle cell disease and beta thalassemia. To learn more, read their FAQs.

SCDAA stands in solidarity with the warriors, advocates and community-based organizations who have been recently affected by natural disasters, including the devasting wildfires in California and the many hurricanes which hit southern states in the fall. As we pray for a speedy recovery, we send our sincere gratitude to the emergency response teams who worked tirelessly to contain the fires and provide hurricane assistance.

If you would like to send support to the Los Angeles and/or those impacted by other natural disasters, we encourage you to explore the below resources. We additionally urge you to remember the importance of donating blood, especially for sickle cell warriors. An emergency of this magnitude can make an already short supply worse. No matter where you are in the country, giving blood as soon as you are able could help someone in need.

CALIFORNIA RESOURCES

• American Red Cross Los Angeles: redcross.org/local/california/los-angeles.html
• L.A. Food Bank: lafoodbank.org
• California Fire Foundation: cpf.salsalabs.org/cff-donation/index.html
• Los Angeles Fire Department Foundation: supportlafd.org
• Donate blood: sicklecelldisease.org/donate-blood-for-sickle-cell
• Resources for people impacted by the fires: laist.com/news/climate-environment/resources-for-socal-fire-victims-evacuees-and-first-responders

OTHER NATURAL DISASTER RESOURCES

• American Red Cross Hurricane Relief: redcross.org/about-us/our-work/disaster-relief/hurricane-relief
• Government Disaster Assistance: disasterassistance.gov
• FEMA support: fema.gov/assistance

If you would like to donate to support recovery efforts, you can make contributions to both wildfire relief and hurricane recovery through SCDAA member organizations using the follow links:

• Hurricane assistance to the southeast U.S. through the Sickle Cell Foundation of Georgia: https://sicklecelldisease.app.neoncrm.com/forms/southeast-us-hurricane-relief
• West coast relief through the Cayenne Wellness Center: https://cayennewellness.org/donate-2/

It is with great sadness that SCDAA shares the news of the passing of Frank Reddick on Dec. 23, 2024. Frank was the president and CEO of the Sickle Cell Disease Association of Florida, an SCDAA member organization headquartered in Tampa. He was a steadfast sickle cell advocate and was the head of the Florida state sickle cell chapters. As a former Tampa city councilman, Frank was a respected leader in his local community. SCDAA sends our sincerest condolences to his family, friends and loved ones. Click here to read more about Frank.

This weekend’s Saturday Night Live skit about the recent historic approvals of potentially curative gene therapies for sickle cell disease is distasteful at best and harmful at worst. Earlier this month, the Food and Drug Administration approved groundbreaking new treatments that could change the lives of thousands. SNL chose to cast a spotlight on this news with a tone-deaf skit depicting a workplace Yankee Swap event in which one of the gifts is the “cure” for sickle cell disease. It is given to an African American character, who quickly trades it for a “Boogie Woogie Santa Claus” toy. The rest of the skit consists of the white characters trying to convince their two Black co-workers to choose the cure over the other Yankee Swap gifts. Their attempts are unsuccessful.

We are disappointed that Saturday Night Live chose to trivialize this landmark moment in history during their program. More than 100,000 people in the United States and millions globally are impacted by this devastating disease, and yet it is one of the few debilitating conditions that you will find people joking about on television. Earlier this year, sickle cell disease was the subject of a lame and insensitive attempt at humor on the HBO Max show Velma and, shortly thereafter, as a quasi-joke-insult by comedian D.L. Hughley on The Daily Show. Some may argue that these references are “just jokes,” but for those impacted by this disease, it is no laughing matter.

Jokes like these undermine the seriousness of this condition. Sickle cell disease (SCD) is an inherited blood disorder and rare disease that affects red blood cells. When these red blood cells become sickle-shaped, or crescent-shaped, they block blood flow to the affected part of the body, causing irreversible organ and tissue damage. When this happens, individuals with sickle cell can suffer from intractable, crippling acute pain called a “crisis” and are at elevated risk for strokes, damage to affected tissue, and all too often, an early death. In fact, a recent study showed the median age of death of those suffering from chronic sickle disease complications was only 43 years.

SNL’s treatment of race in the Yankee Swap skit also misses the mark. Part of the “humor” revolves around the common myth that only Black people can have sickle cell disease. While it does disproportionately impact the Black community, sickle cell does not discriminate. People of all ethnic backgrounds can inherit the disease. In the United States, Hispanic and Latino populations have the second highest incidence, but Asian, Indian, Native American and – yes – White people, can all be born with the disease. On a global scale, sickle cell disease affects people from countries around the world, including Italy, India, the United Kingdom and Jamaica. One doesn’t develop sickle cell disease, nor can one “catch it.” Individuals are born with it, and there is no universal cure.

Why are we joking about a disease as serious as this one? Many people don’t understand the devastating reality of the condition. The onset of sickle cell pain is sudden and debilitating. A pain crisis is relentless and can last for hours or for days. It has been described as feeling like you are walking on hot coals or like shards of glass are traveling through your veins. Far too often, when individuals living with sickle cell disease, or “warriors” as they call themselves, are in crisis and seek medical care in some emergency departments, they face long waiting periods, are accused of exaggerating symptoms for attention, and far, far too often are characterized and treated as if they are drug seekers.

For physicians who are knowledgeable about sickle cell disease and experienced in caring for those living with it, their ability to prescribe the very drugs that will help their patients is hampered by current federal regulations put in place to address the opioid crisis thus limiting how these drugs can be used in cases such as sickle cell. Layer on issues of health care inequity, discrimination and limited access to consistent, comprehensive quality care and the word “crisis” takes on new meaning.

Community-based organizations, such as the 50-plus members of the Sickle Cell Disease Association of America, Inc., spanning 29 states, are on the ground and focused on providing support, resources, and services to serve more than 500,000 children and adults living with or impacted by sickle cell disease.

Sickle cell disease also puts a strain on caregivers and family members, who must fit trips to the emergency room, doctors’ appointments and sick days into the rigors of daily life. Parents of children with sickle cell may lose wages, promotion opportunities or jobs as they try to support their family while attending to pain crises and their child’s care. This pressure can cause personal and professional instability, compromise mental health and wellness, and, in too many cases we have seen, lead to homelessness.

It is for all of the above, and more, that the Sickle Cell Disease Association of America, Inc., condemns the use of sickle cell disease as a punchline. It demeans and ridicules a condition that people are born with and from which they will face devastating health challenges throughout their lifetimes.

Stereotypes and misinformation reinforced by thoughtless comedy have real-life consequences. Sickle cell patients struggle daily to be taken seriously—in school, at work and even playing sports. As we work to change the perception of sickle cell and increase education surrounding this condition, insensitive and inappropriate jokes like these demean, marginalize and disrespect those living with the disease. They work against progress and contribute to the spread of misinformation. As a society, we must do better and treat rare diseases and the people who live with them with the respect they deserve.

Sickle cell is not a joke.
 

We are very excited to share that today, Dec. 8, the Food and Drug Administration approved two gene therapies to treat sickle cell disease! These potentially curative therapies are the first treatments of their kind available to individuals with SCD. We are heartened by this approval and are proud to support our community during this milestone moment. SCDAA will be releasing a full statement and additional information for patients and caregivers soon. To learn more about these approvals, click here.