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.   

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.  

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.  

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.

The Sickle Cell Disease Association of America (SCDAA) named Regina Hartfield as CEO and president effective Jan. 14, 2022. Hartfield has served on the association’s board of directors for three years, including as chair of the fundraising committee.

“Regina is an outstanding choice as our next CEO,” said Thomas Johnson, chair of the SCDAA board. “Her experience on the SCDAA board has provided her great insight into the organization’s strategy as well as the priorities of those SCDAA exists to serve, namely the individuals across America living with sickle cell disease and their families. Regina understands and appreciates the importance of keeping the individual with sickle cell disease and his or her needs at the forefront of SCDAA’s mission and daily purpose.”

Under Hartfield’s leadership as fundraising committee chair, the committee introduced the SickleTini virtual fundraiser, which paired education with interactive activities and provided new sponsorship opportunities. Hartfield initiated the development of the SCDAA’s 50th anniversary campaign creative brief, a marketing tool to steer the strategic fundraising goals. She also served as a member of the Member Organization Partnership Improvement ad hoc committee, working with the Executive Leadership Council president to develop an approach to member organization benefits, communication and inclusion strategies.

“I am excited and deeply honored to be stepping into this important role,” Hartfield said. “This is a pivotal time in SCDAA’s 50-year history. Awareness of sickle cell disease and its impact on those living with it or carrying the trait has never been greater. My time as an SCDAA board member, coupled with my longstanding experience in the nonprofit and for-profit worlds, enable me to bring a unique perspective to this role. I look forward to working with the incredible staff, the board and the member organizations on behalf of those impacted by sickle cell disease and related conditions.”

Prior to joining the Sickle Cell Disease Association of America, Hartfield was a manager for federal, state and commercial contracts for CVP, an information technology consulting firm in Virginia and Maryland. During her time at CVP, she developed strategic outreach initiatives, wrote strategy and implementation plans for the national expansion of a federal health agency’s program and managed a $30-million disaster recovery grant contract for the state of Tennessee, overseeing staff and operations of CVP’s regional office.

Previously, Hartfield was a community affairs professional in the nonprofit arena in New York for more than 25 years and brings experience as a leader in nonprofit organizations.

Hartfield was senior vice president for programs and outreach for the Prospect Park Alliance. As a member of the senior leadership team, she provided counsel, support and input on policy, program administration, capital projects and fiscal management issues. She oversaw the operation of five programs and managed a budget of $1.5 million. During her tenure, Hartfield guided her department through the development of its five-year strategic plan, supported the park’s development and fundraising efforts and served as spokesperson and park advocate.

She also served as community affairs and special project manager at Memorial Sloan-Kettering Cancer Center, where she provided leadership, direction and counsel to the cancer center’s senior management. Her relationships with community leaders, elected officials and other stakeholders resulted in increased funding, collaborative programming and a stronger presence in the community. Hartfield developed a cancer awareness community lecture series, which provided the community with access to the center’s top research and medical experts, as well as initiated and implemented cancer awareness outreach programs for children, survivors and youth.

Hartfield was the first community relations coordinator at The New York Botanical Garden. She instituted and managed outreach activities that increased audiences, encouraged diversity and built alliances. She initiated Bronx Day at the Garden, a program to encourage visitors from the garden’s home borough through free admission, entertainment from local artists and activities focused on botany and horticulture.

In addition, Hartfield serves on advisory boards and is a member of the Universal Sailing Club, where she has served on its board in different capacities. Hartfield graduated with honors from Lehman College of the City University of New York with a Bachelor of Arts in community outreach.  

Over the past few months, more than 1,000 people in the U.S.A. and Canada were infected with a bacteria called Salmonella. The Centers for Disease Control and Prevention investigation can be read here.

“… red onions from Thomson International Inc., were the likely source of the outbreak. Other onion types (such as white, yellow, or sweet yellow) were also likely to be contaminated because the onions were grown and harvested together… On August 1, 2020, Thomson International Inc., recalled all red, yellow, white, and sweet yellow onions because they may be contaminated with Salmonella. Other companies also recalled onions or foods made with recalled onions. Consumers, restaurants, and retailers should not eat, serve, or sell recalled onions and products.”

Here is the Thomson International Inc. recall notice.

Here is the list of recalled products made with onions.

What is Salmonella infection?

Salmonella is a group of bacteria with many different types. The type responsible for most infections in humans is carried by chickens, cows, pigs, and pet reptiles (turtles, lizards, and iguanas). Most infections with Salmonella spread to people through contaminated food such as meat, eggs, and vegetables.

Why mention this now?

Salmonella can cause special problems in individuals with sickle cell disease and thalassemia: bone infection (osteomyelitis) or joint infection (septic arthritis) to include:

• Diarrhea, especially bloody diarrhea
• Fever for many days
• Prolonged pain in a bone or joint
• Can be multiple sites, often symmetrical
• Redness and swelling at the site of pain
• Treatment might require bone biopsy, weeks of antibiotics, and sometimes surgery

Why does this happen in sickle cell disease?

Most likely 3 reasons:

1. Sickle cell damage to the cells lining the gut allows Salmonella to enter the bloodstream more easily.
2. Sickle cell disease reduces the immune system’s ability to clear bacteria from the bloodstream.
3. The expanded bone marrow, due to high production of red cells and bone marrow sites damaged by lack of oxygen, are places where Salmonella bacteria can hide and grow.

Salmonella contamination is linked to poor sanitation.

What you can do

• If your household has onions or products with onions purchased in the summer, check whether they are on the recall list.
• If you have fevers and diarrhea, see your doctor promptly.
• If you have bone pain or joint pain with features different from your usual sickle cell pains (redness, swelling, lasting a long time, unusual site), see your doctor.
• Use good food-handling practices for meat, eggs, and vegetables.
• Cook food properly at recommended temperatures.
• Avoid touching pet reptiles.
• Avoid street food that may involve dishes made with raw onions.

HANOVER, Md.—The Sickle Cell Disease Association of America launched a sickle cell disease clinical trial finder, a centralized, simple-to-navigate website 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 website to search for trials by keyword, location, study type and phase, now listed in one place.

“Until now, people with sickle cell disease had to search far and wide to find clinical trials,” said Beverley Francis-Gibson, president and CEO of the Sickle Cell Disease Association of America. “The clinical trial finder provides a one-stop shop for patients and their families to discover, learn about and connect with trials that are critical to discovering therapies and treatments for sickle cell disease.”
 

The Sickle Cell Disease Association of America will hold its 49^th annual national convention virtually this year from Tuesday, Oct. 12, through Saturday, Oct. 16. The five-day multidisciplinary convention addressing sickle cell disease and sickle cell trait draws hundreds of health care professionals, patients, families, community-based organizations, leaders and advocates.

“Our lineup of world-class speakers will present innovative and current best practice strategies and inspire and challenge our thinking about management and care and the latest scientific and clinical information about sickle cell disease,” said Beverley Francis-Gibson, president and CEO of the Sickle Cell Disease Association of America. “There’s something for everyone at our convention this year.”

The keynote and honor lectures will be delivered by:

• Kim Smith-Whitley is executive vice president and head of research and development at Global Blood Therapeutics, and Teonna Woolford is founder and CEO of The Sickle Cell Reproductive Health Education Directive. Woolford lives with sickle cell anemia. Smith-Whitley and Woolford will present the Charles F. Whitten, M.D., Memorial Lecture: “Sickle Cell and Access to Reproductive Health Services: An Advocate’s Perspective.”
• Gary H. Gibbons directs the National Heart, Lung and Blood Institute at the National Institutes of Health. Gibbons will present the Clarice D. Reid, M.D., Lecture: “Accelerating Innovative Treatments for Sickle Cell Disease.”

Additional convention events include business and grant meetings, exhibit hall presentations, advocacy lectures, clinical trial updates, educational workshops, medical reports, panel discussions, award presentations and social events. Participants will have the opportunity to connect and interact virtually with health care leaders and professionals and gain new relationships, knowledge and resources.

To learn more, see the convention program or register, visit www.sicklecelldisease.org/get-involved/events/annual-national-convention.