Author Archives: Emma Day

New Publications Emphasize Inequities in Pediatric SCD Care

This week, two new publications call attention to the barriers to care children with SCD face. Prioritizing Sickle Cell Disease, an article co-authored by SCDAA Chief Medical Officer Lewis Hsu for the American Academy of Pediatrics, is a call to action within the medical community to work together to maximize available screenings and treatments. The Centers for Disease Control and Prevention’s newly released Vital Signs publication, Preventing Sickle Cell Anemia Complications in Children, reports fewer than 50% of children 2-16 years old received the recommended screening for stroke in 2019. Both publications identify racism and discrimination as barriers to quality care and potentially lifesaving preventative measures for children with SCD.

Click here to read Prioritizing Sickle Cell Disease.

Click here to read Preventing Sickle Cell Anemia Complications in Children.  

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.