Did you know that the federal government is poised to make some of the biggest decisions in sickle cell history right now? Current pending legislation would direct an unprecedented amount of funds to sickle cell treatment, research and support. Our FY24 Legislative Priorities, developed in collaboration with Sick Cells, outline these exciting bills and requests. Read through the document to learn more about these initiatives and call your representatives to ask for their support!
Category Archives: News
SCDAA names new board members
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, named Melissa Creary and Monica Mitchell to the association’s board of directors and Chris Ruffin Jr. to the Corporate Advisory Council.
Melissa Creary
Monica Mitchell
Chris Ruffin Jr.
Melissa Creary is senior director for the Office of Public Health Initiatives at the American Thrombosis and Hemostasis Network and an assistant professor in the department of health management and policy at the University of Michigan’s School of Public Health. Over a nine-year career at the Centers for Disease Control and Prevention in the Division of Blood Disorders, she helped create and lead the first national program and data collection system for sickle cell disease at the agency. Creary received her doctorate in interdisciplinary studies focusing on health, history and culture, her Master of Public Health and her bachelor’s degree in biology at Emory University in Atlanta, Georgia.
Monica Mitchell is founder and president of MERAssociates, an award-winning, woman- and minority-owned education, research and evaluation consultancy based in the Washington, D.C., area. She has been the principal investigator or co-principal investigator of National Science Foundation-funded grants totaling over $2,500,000. Prior to launching MERA, Mitchell was program officer at the National Science Foundation and managed portfolios in the Division of Research on Learning in Formal and Informal Settings and the Division of Undergraduate Education. She earned her Doctor of Education and master’s degree in engineering at Columbia University and her bachelor’s degree in economics at the University of California, Los Angeles.
The Sickle Cell Disease Association of America’s Corporate Advisory Council advises the association’s board of directors with board recruitment, fundraising and general advisory information.
Chris Ruffin Jr. is a senior news producer for ABC24 TV in Memphis, Tennessee, and the author of “Succeeding with Sickle Cell.” Before moving to Memphis, he worked in TV news in Columbus, Georgia, and Winston-Salem and Charlotte, North Carolina, where he won an Emmy for Best Morning Newscast. Recently, he partnered with Aflac, Red Cross and Children’s of Alabama to spread awareness about sickle cell disease and mentor other sickle cell patients. Ruffin earned his bachelor’s degree in broadcast journalism from Stillman College in Tuscaloosa, Alabama.
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.
Urge Officials to Cosponsor the SCD Comprehensive Care Act
Dear Sickle Cell Community,
Over the past several months, SCDAA has been working with congressional sickle cell disease (SCD) champions and other community and provider groups to advance bipartisan legislation to improve care for individuals with SCD. The Sickle Cell Disease Comprehensive Care Act (H.R. 6216 / S. 3389) authorizes the Centers for Medicare and Medicaid Services (CMS) to create a demonstration program to improve preventive and primary outpatient care for individuals living with SCD who are enrolled in Medicaid.
Members of Congress are back home for the August congressional district work period. Upon their return to Washington in September there will be a limited number of legislative workdays remaining before the November elections. Additional cosponsors are needed to show congressional leaders there is strong support for the Sickle Cell Disease Comprehensive Care Act and for the legislation to be scheduled for a vote in the House and Senate.
NOW is the time to reach out and remind your elected officials that September is Sickle Cell Awareness month and urge them to support individuals with SCD and their families by cosponsoring this legislation. Please click Take Action below to send a message to your Senators and Representatives. Please make sure to include your relationship to SCD (e.g., individual with SCD, parent, loved one or friend of an individual with SCD) at the beginning of the letter and feel free to personalize the text.
Thank you for your help in making sure Congress hears from the sickle cell community!
Sincerely,
Sickle Cell Disease Association of America
The Passing of Dr. Samir Ballas
SCDAA regrets to announce that Dr. Samir Ballas passed away on August 12. He was devoted to caring for adults with sickle cell in Philadelphia at Thomas Jefferson University. He made many significant contributions to clinical research on sickle cell pain and lab research on sickle cell shape changes. Read the letter from his daughter that describes his deep faith and lifelong commitment to help sickle cell disease here: https://bit.ly/DrBallas. Our thoughts are with his family at this difficult time.
Sickle Cell Care Expansion Act Introduced to the Senate
Ahead of World Sickle Cell Awareness Day on June 19, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.) introduced the Sickle Cell Care Expansion Act to improve access to medical treatment and quality of life for people suffering from Sickle Cell Disease (SCD).
This bill, which complements legislation introduced earlier this year by Congressman Charlie Crist (D-Fla.), will enable the National Health Service Corps to provide scholarships and loan repayment assistance for those studying benign hematology – the specialty under which Sickle Cell Disease falls – making specializing in this field an easier financial decision and attracting more providers to the SCD workforce, which does not currently meet the needs of patients who are no longer receiving pediatric care. Additionally, this bill creates competitive grants to increase awareness about SCD and resources available to patients. The Senators’ legislation builds on the House version by providing more resources for hospitals to further fund support services for young adults transitioning from pediatric to adult care.
SCDAA President and CEO Regina Hartfield commented on this legislation, noting that “A major barrier to receiving high-quality care for sickle cell warriors is the lack of access to medical professionals, such as hematologists, who are trained to treat sickle cell disease. Many of our warriors are routinely forced to choose between commuting for hours to see a specialist and receiving inadequate care. Nobody should need to travel out of state or great distances within the state during a crisis to be seen by a hematologist who understands their condition. The Sickle Cell Disease Association of America believes that the Sickle Cell Care Expansion Act will significantly increase the number of qualified physicians who specialize in sickle cell disease.”
Click here to read more about the Sickle Cell Expansion Act.
SCDAA Joins the Newly Formed Sickle Cell Disease Partnership
Partnership Calls on Policymakers to Implement Proposals in 2020 Landmark Report
Today, in recognition of World Sickle Cell Day on June 19th, the Sickle Cell Disease Association of America announced it has joined the newly formed Sickle Cell Disease Partnership. The Partnership is comprised of 15 organizations representing a diverse cross-section of patient advocates, health care providers, health insurers, biopharmaceutical companies and others committed to improving the lives and outcomes of individuals living with Sickle Cell Disease.
“For too long, our nation has turned a blind eye to the devastating toll of Sickle Cell Disease on the lives of 100,000-plus Americans and their families. Today, one in 13 African Americans carry the trait for Sickle Cell, meaning their children are at risk for having the disease,” said Dr. Brett Giroir, Senior Advisor, Sickle Cell Disease Partnership. “The majority of people living with Sickle Cell Disease lack basic access to care, while our health care infrastructure and investments in research have failed to keep pace with the desperate need for treatment. It’s time for our nation’s leaders to prioritize individuals with Sickle Cell Disease and implement the recommendations of The National Academies’ 2020 Strategic Plan and Blueprint for Action.”
Coalition members, including SCDAA, are calling on Congress and the Administration to act with urgency to adopt The National Academies’ policy recommendations outlined in its landmark 2020 report, “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.”
About the Sickle Cell Disease Partnership
The Sickle Cell Disease Partnership is a multi-sector collaboration of health care stakeholders committed to advancing actionable federal health care policies that will improve the lives of patients living with Sickle Cell Disease. The Partnership’s main objective is to work collaboratively across the Sickle Cell Disease community to translate the recommendations of the National Academies’ landmark 2020 report into legislative and administrative actions in Congress and the Executive Branch. The Sickle Cell Disease Partnership is convened and managed by Leavitt Partners, an HMA company.
About the Sickle Cell Disease Association of America (SCDAA)
SCDAA advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services.
About Sickle Cell Disease
Sickle Cell Disease is a rare, genetic blood disorder that primarily affects Black individuals. Sickle Cell Disease is inherited when a child receives two sickle cell genes—one from each parent. A person with the disease is born with it; people cannot catch it from being around a person who has it. Sickle Cell Disease affects an estimated 100,000 Americans and can cause pain and other serious problems such infection, acute chest syndrome, lung problems, severe pain, and stroke.
Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has Sickle Cell Disease, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.” The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow.
This can cause pain and other serious problems such as infection, acute chest syndrome, lung problems and stroke. Learn more about Sickle Cell Disease here.
Contact Us
To learn more about the Sickle Cell Disease Partnership, please visit www.sicklecellpartnership.org. Members of the media can reach our press office at: communications@sicklecelldisease.org.
SCDAA Releases Comments on the CDC’s Opioid Guidelines
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.
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.
