Tag Archives: Sickle Cell News

Advocacy Alert: Save the Sickle Cell Data Collection Program

Last week, the Trump administration announced drastic changes and reductions to federal health programs that support the sickle cell disease community. Specifically, on April 1, all the staff that oversee the Sickle Cell Data Collection (SCDC) Program at the Centers for Disease Control and Prevention (CDC) were terminated. We are very concerned about the future of this program, and we are asking you to please call or email your Representative and Senators to ask that they reverse the cuts and protect the existence of and funding for the Sickle Cell Data Collection Program.

What is the issue?

The CDC cuts are of particular concern to the sickle cell disease community. The Sickle Cell Data Collection program, which now operates in 16 states, collects data for the sickle cell disease community on things like prevalence, insurance coverage, health outcomes and much more. This data is used to develop interventions and policies that aim to improve care for sickle cell warriors. CDC plans to expand the program across the US.

Collecting data in a centralized place is critical to improving care for any disease. Elimination of the SCDC Program would lead to:

  • Poorer health outcomes for SCD warriors. Data can tell us what treatments work best and for whom, allowing health providers to tailor care.
  • Increased costs to the health care system. The less we know about a disease, the harder it is to provide preventive care to stop complications from arising.
  • Stalled progress on research and innovation. Data guides research which in turn leads to more and better treatment options.

We are calling on everyone (not just member organizations or Warriors in one of the 16 states) to contact their Representative and Senators to ask that they protect the Sickle Cell Data Collection Program!

What can you do?
Step One: Find contact information for your lawmakers’ offices!

Step Two: Say or email (please feel free to personalize)

I am [calling/emailing] as a member of the sickle cell disease community and as a constituent to ask that you protect the Sickle Cell Data Collection Program at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC’s Division of Blood Disorders, where the Sickle Cell Data Collection Program, the only surveillance system dedicated to sickle cell disease, is housed. This program helps collect important data on sickle cell disease which in turn:

  • Helps lead to new and more effective treatments.
  • Guides the development of interventions and policies that aim to improve care for sickle cell Warriors and lower costs for the healthcare system as a whole.
  • Prompts where and when new clinics are built in order to best serve the community.  

I am relying on you, as my [Senator/Representative] in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program. Thank you for your time and attention to this matter.

CMMI Announces the Cell and Gene Therapy Access Model

Today, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model, a demonstration aimed at improving access to cell and gene therapy products in the Medicaid program. CMMI chose sickle cell disease (SCD) as the first indication for the model. The intent of the model is to provide access to the two recently approved gene therapy products for SCD for individuals insured by Medicaid. Participation by state Medicaid programs will be optional.

SCDAA is excited about the model and appreciated that CMMI engaged with our organization and the broader SCD community while developing the demonstration. SCDAA will be reviewing the information released today in detail, but we are hopeful that this effort will help ensure that individuals living with SCD on Medicaid who are interested in pursuing gene therapy are able to do so.

To read the full statement from the Centers for Medicare & Medicaid Services, click here.

Sickle Cell Disease is Not a Joke

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.

SCDAA and MedicAlert Foundation Launch Pilot Program

Leading Sickle Cell Organization and MedicAlert Foundation Launch Pilot Program to Improve Emergency Care During Sickle Cell Pain Crises

Non-profits partner to help people with sickle cell disease get faster, better emergency care.

HANOVER, MD – Sickle Cell Disease Association of America (SCDAA), the leading national organization and voice for people with sickle cell disease (SCD), today launched a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease (SCD).

Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of SCD. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the number one reason people with SCD seek emergency treatment.

However, SCD patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the Emergency Department (ED). The goal of the pilot program is to improve access to timely, effective emergency care for people experiencing a sickle cell crisis.

The program provides participants with a MedicAlert digital health profile to store their physician-approved pain plan, physician contact information, and other vital health data. Each participant also receives a customized Smart Medical ID Card, which provides easy access to their health information and pain plan via a QR code.

The goal is to shortcut time to diagnosis and treatment. When seeking emergency treatment, participants will present their Smart ID Card to share their health history with ED personnel – confirming their SCD status, and providing the critical details needed for ED personnel to provide care.

“With more than 100,000 people in the U.S. living with SCD, finding an intervention to help improve the speed and quality of ED care would be hugely impactful,” said Regina Hartfield, President and CEO of SCDAA. “For this program, we’re leveraging Medicalert’s decades of experience providing medical information in emergencies – as well as MedicAlert’s visibility in the medical community – to help people living with sickle cell.”

MedicAlert Foundation is a leading nonprofit providing lifesaving medical ID and emergency response services for millions of people living with chronic health conditions.

“Since 1956, MedicAlert has been globally trusted by both emergency medical personnel and people living with serious health conditions,” stated Karen Cassel, MedicAlert Foundation’s President and CEO. “We’re pleased to launch this pilot during Sickle Cell Awareness Month. Our hope is to equip and empower SCD patients with tools to help them quickly get the care they need during a pain crisis.”

The pilot will run for one year. Two-hundred fifty adults in states with significant sickle cell populations are being recruited to participate in the first round.

“We believe this program has the potential to significantly improve outcomes for people experiencing sickle cell crises,” Hartfield said. “With positive results, we’ll seek additional funding to expand the program nationally.”

More details about the program, including full eligibility guidelines and how to apply, are available at medicalert.org/sicklecellpilot. Anyone living with SCD who has additional questions about the pilot should contact either their local SCDAA chapter, or email MedicAlert at sicklecellpilot@medicalert.org.  

SCDAA Teams with MedicAlert Foundation


Sickle Cell Disease Association of America Teams with MedicAlert Foundation to Improve Emergency Outcomes During Sickle Cell Crises

Nonprofits partner to help people with sickle cell disease get faster, better emergency care.

The Sickle Cell Disease Association of America, the leading patient organization for people with sickle cell disease, announced a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease.

More than 100,000 Americans live with sickle cell disease, a genetic blood disorder that affects red blood cells. Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of sickle cell disease. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the No. 1 reason people with sickle cell disease seek emergency treatment.

However, patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the emergency department. Many emergency physicians are not well versed in sickle cell disease and treatment protocols. And with the rise of the opioid crisis, emergency department providers are cautious about providing the powerful pain medication needed to quell a sickle cell crisis. Sometimes sickle cell patients are unfairly labeled as “drug seekers” by emergency department personnel who don’t understand the disease.

The Sickle Cell Disease Association of America and MedicAlert pilot program aim to improve access to timely, effective emergency care for people experiencing a sickle cell crisis. MedicAlert Foundation is a leading nonprofit providing lifesaving medical identification and emergency response services for millions of people living with chronic health conditions.

“Delayed treatment in a sickle cell crisis can lead to long-term organ damage and other health complications — not to mention the unnecessary pain the person with sickle cell disease must endure,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “MedicAlert has decades of experience storing critical health information and making it available to emergency personnel. We want to leverage that to improve the experience for people seeking treatment for a sickle cell crisis.”

The pilot program will provide participants with a MedicAlert digital health profile to securely store their health information, treatment and pain plans, medications, physician information, emergency contacts and more. Each participant will also receive a customized Smart Medical ID Card, which provides easy access to their health information and physician-prescribed pain management plan via a QR code.

The goal is to decrease time to diagnosis and treatment, improving health outcomes from a sickle cell crisis. When seeking emergency treatment, participants can use the Smart ID Card to share their health history with emergency department personnel — confirming their sickle cell disease status and providing the critical details needed for personnel to provide care.

“Since 1956, MedicAlert has been globally trusted by both emergency medical personnel and people living with serious health conditions,” stated Karen Cassel, MedicAlert Foundation’s president and CEO. “Through this collaboration, we hope to equip and empower sickle cell patients with tools to help them quickly get the care they need during a pain crisis.”

The pilot program, which will run for one year, is set to launch in September 2023 during National Sickle Cell Awareness Month. Two-hundred-fifty individuals will be recruited for the first round.

“We believe this program has the potential to significantly improve outcomes for people experiencing sickle cell crises,” Hartfield said. “With positive results, we’ll seek additional funding to expand the program nationally.”

Cassel said, “Both MedicAlert Foundation and the Sickle Cell Disease Association of America express our deepest thanks to Insperity Inc. for funding this pilot through their grant program. We’re grateful for their support and commitment to improving quality of life in the communities they serve.” Insperity is a leading provider of scalable human resources solutions for small to mid-size companies.

More details about the pilot program, including eligibility guidelines and how to apply, will be announced in late June. Anyone living with sickle cell disease who is interested in participating in the pilot should contact either their local Sickle Cell Disease Association of America chapter or email MedicAlert at sicklecellpilot@medicalert.org.  

June 19, 2023, is Officially Sickle Cell Awareness Day in Maryland!

Maryland Governor Wes Moore has signed a proclamation to make June 19, 2023, Sickle Cell Awareness Day! This recognition goes a long way in raising awareness about sickle cell disease, combating prejudices and lifting up our community. Thank you for supporting our cause and helping us to “Shine the Light on Sickle Cell Disease!”  

SCDAA to promote clinical trials

The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, formed the Sickle Cell Disease C.A.R.E.S. Consortium, an initiative of pharmaceutical companies united to promote clinical trial participation and education.

“We have an opportunity and a responsibility to change the perception of clinical trials and increase the participation of sickle cell patients in clinical trials,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “Together, we will collectively leverage our resources to educate and encourage more trial participation while providing opportunities and therefore better options for the treatment of sickle cell disease.

C.A.R.E.S., which stands for Collaboration of Advocates for Research, Education and Science, consists of members Agios; Beam Therapeutics; Editas Medicine; Forma Therapeutics, a Novo Nordisk Company; Hemanext; Pfizer; Sanofi and Vertex Pharmaceuticals.

The Sickle Cell Disease C.A.R.E.S. Consortium will launch with an awareness campaign for the Sickle Cell Disease Association of America’s clinical trial finder. Available on the association’s website and mobile app, the trial finder is a centralized site to help people with sickle cell disease, their families and caregivers find clinical trials.

Clinical trials help pharmaceutical companies collect data about the effectiveness and safety of sickle cell disease treatments and can provide participants with new treatments before they become widely available. Participants can use the clinical trial finder to search for sickle cell disease-focused clinical trials by keyword, location, study type and phase, all listed in one place. The Sickle Cell Disease Association of America and Forma Therapeutics partnered to develop the trial finder in 2021.

The Sickle Cell Disease C.A.R.E.S. Consortium’s awareness campaign will use stories, videos, infographics, testimonials, public relations and marketing to spotlight the clinical trial finder as well as debunk myths about clinical research and spark conversations about trial participation.  

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.