Author Archives: Emma Day

MARAC Advisory Statement: Immunizations

August is National Immunization Awareness Month. What does that mean for individuals with sickle cell disease (SCD)?

The Big Picture from SCDAA MARAC
Individuals with sickle cell disease are more likely to have complications from many infections and receive a lot of benefit from immunizations. Family members can help protect a child or adult with sickle cell disease by also getting immunizations.

More Information
Immunizations and vaccines protect people from serious disease. The possible risks from a vaccine are much smaller than the possible bad outcomes from the diseases.

Streptococcus Pneumoniae

  • Streptococcus pneumoniae bacteria was a leading cause of death for children with SCD.
  • Infection with Strep pneumo can move quickly from fever to extremely sick in the intensive care in just a few hours for children with SCD. Losing spleen function due to clogging of the spleen with sickle red blood cells is what makes Strep pneumo bacteria so dangerous for SCD patients.
  • Immunizations against Strep pneumo are important for every child, and extra immunizations are recommended for individuals with SCD: Pneumovax-23 and PCV20.

Monkeypox (MPV)

  • MARAC monitoring has not found any unusual monkeypox problems in individuals with sickle cell disease. If anybody hears of unusual events with monkeypox and sickle cell disease, please pass along this information to the SCDAA Chief Medical Officer Dr. Lewis Hsu at info@sicklecelldisease.org.
  • MARAC encourages anyone with symptoms of monkeypox (MPV) to see a health care provider to get tested. If you do not have access to a provider, visit findhealthcarecenter.hrsa.gov to get connected.
  • There is a vaccine available for those who are at highest risk. If you are experiencing any symptoms contact your health care provider, avoid close contact with others and take a break from sex, going out to bars, gyms, clubs and other events. Do not share personal items, wash your hands and clean shared surfaces regularly.

COVID-19

  • The latest data continues to show that SCD does have increased vulnerability to severe COVID.
  • COVID can trigger SCD symptoms like vaso-occlusive pain or sickle acute chest syndrome.
  • MARAC strongly urges everyone with SCD and their families to get vaccinated and get all recommended boosters. In addition, you should consider wearing a mask, avoiding crowds and standing at least six feet away from other people.
  • Do not attend social events if you have symptoms of COVID-19 or tested positive for COVID 5 days prior, even if you’re vaccinated.
  • If you do catch COVID, SCD is among the conditions eligible to receive treatments to reduce the risk of getting severe disease and hospitalization. Contact your health care provider.

Influenza (the Flu)

  • MARAC encourages everyone to get immunized against influenza, especially individuals with SCD and their family members.
  • Influenza can lead to severe illness in individuals with SCD. Influenza can trigger a vaso-occlusive painful event or acute chest syndrome. The risks of the immunizations are less than the risks of severe influenza disease.

Other diseases

  • Immunizations against meningitis are very important in all individuals living with sickle cell disease.
  • Children with sickle cell should all be immunized following the recommendations of the CDC and American Academy of Pediatrics. Childhood immunizations can help protect against diseases that are deadly or disabling, like measles, polio, mumps, whooping cough or rubella.
  • There is currently an outbreak of Polio in communities with low rates of polio immunizations. Polio can cause permanent paralysis.
  • In tropical areas with malaria, avoid mosquito bites and take anti-malarial medicines, especially young children with SCD. Malaria immunizations began to be offered in 2021.
  • The risks of the immunizations are much smaller than the risks of these severe diseases.

Click here to download this MARAC statement.

Tools for Sickle Cell Awareness Month You Don’t Want to Miss

September is Sickle Cell Awareness Month. Check out these helpful tools and learn more about how to support sickle cell warriors!

For Schools

For Employers

For Emergency Medicine

For Hospitalists

For Blood Transfusion

About Sickle Cell Trait

For Advocacy

Looking for more? Visit oneSCDvoice’s Sickle Cell Awareness Month resources for even more links and tools!  

Member Organization Sickle Cell Awareness Month Events 2022

Join an SCDAA member organization at one of these great events this September!

 

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!

CLICK HERE TO TAKE ACTION

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.

 

MARAC Advisory Statement: Monkeypox

July 20 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the news about monkeypox and is monitoring the situation. Please follow advisories from organizations such as the Centers for Disease Control and Prevention to avoid close, skin-to-skin contact with individuals who have a rash that looks like monkeypox. Learn more from the CDC here and read the CDC monkeypox FAQs here.

This statement has been provided by members of the Sickle Cell Disease Association of America’s Medical and Research Advisory Committee.

Memorial Service for Dr. Kwaku Ohene-Frempong

Dr. Kwaku Ohene-Frempong, a visionary sickle cell doctor and advocate, passed away on May 7, 2022, at 76. A memorial service to honor his life has been planned for Saturday, June 25, in Accra, Ghana. The memorial will be livestreamed for the hundreds of community members who will be unable to attend the live event in Accra. Please click here to register.

A website has also been created to commemorate Dr. Ohene-Frempong’s memory. Click here to visit the site and learn more about the outstanding impact he had on so many lives.  

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.