Mary F. B. Murphy began her trail-blazing work by opening the first sickle cell disease foundation in Florida in 1972 and began operating the organization out of her own home. Today, that organization has grown to serve 135 families with sickle cell disease.

Please click here to learn more about Mary’s journey

A national awareness campaign to celebrate World Sickle Cell Awareness Day on June 19, 2022.

We invite you to join with friends, family, neighbors and others in your community, as people around the nation and across the globe, host and hold local gatherings to shine the light on sickle cell disease. Together, we must and will find a universal cure for sickle cell disease!

Shine the Light on Sickle Cell is supported by the Health Resources and Services Administration (HRSA) as part of the Sickle Cell Disease Treatment Demonstration Project. For more information visit HRSA.gov.

March 2022 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee notes that news about COVID-19 continues to emerge. Monitor your state or local health department for more information. Below are some updates and suggestions for individuals with sickle cell disease.

Several studies have examined the effects of COVID-19 infection in individuals in the sickle cell community and shown concerning results to include:

• Individuals with sickle cell disease do have higher risks for severe COVID-19 disease and hospitalization compared to those of the same age without sickle cell disease. Poor kidney function raises the risk for severe COVID-19. A blood flow problem in the lungs called pulmonary hypertension also raises the risk for severe COVID-19.
• COVID-19 infection often triggers sickle vaso-occlusive pain in adults. This type of crisis can cause the most intense pain an individual with sickle cell has ever experienced.
• COVID-19 infection can also trigger sickle acute chest syndrome. Not everyone gets the same problems and children might have mild cases, but severe disease and death are unpredictable.
• The American health care system has not solved the issues of racial and ethnic disparities in health
  during the pandemic. People of color have a higher risk of COVID-19 complications and are dying from COVID-19 at younger ages.

The positive news is:

• The risk of death from COVID-19 for those with sickle cell disease is not as high as the risk of death from COVID-19 in patients who are receiving an organ transplant or are in active chemotherapy for cancer.
• Sickle cell trait does not present a higher risk of severe COVID-19 or death.

The COVID-19 vaccine is safe, and the vaccine’s risks to individuals with sickle cell disease are very low when compared to the risks of a COVID-19 infection.

COVID-19 vaccines have now been given to tens of thousands of people with sickle cell disease across many countries for at least 14 months. People with sickle cell report about one to two days of side effects, which is about the same as reports from the general population.

SCDAA MARAC members have found that very rare cases of sickle cell pain have been reported after vaccination for COVID-19.

ACTIONS YOU CAN TAKE

1. Stay up to date with your COVID-19 vaccines.
2. If you feel comfortable wearing a mask, you can. You are at risk. Don’t be bullied.
3. Continue medications and preventive care for sickle cell disease.
4. Seek care when needed. Do not delay getting care for your medical condition. Health care professionals have infection prevention plans to help protect you from getting COVID-19 if you need care. If you have sickle cell disease and do not have a regular doctor, we strongly recommend that you connect with one.
5. Keep up with your state or local health department for more information.

TEST SOON AND TREAT EARLY (CDC infographic in English and Spanish)

1. Americans can request free COVID-19 tests mailed to your home. To learn more, visit COVIDtests.gov.
2. If you have symptoms that are suspicious for COVID-19, take a home COVID-19 test or get tested in a medical facility.
3. Several treatment options are now available for an individual with sickle cell disease who tests positive for COVID-19. Treatments can prevent a mild infection from leading to severe disease, hospitalization or death. Click here to learn more. Ask your doctor or pharmacist for the treatment that is used for your location, age and medical condition.

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

Mark your calendar: SCDAA’s 2022 Advocacy Day event to be held virtually on April 5! Advocacy Day is the perfect opportunity for patients and caregivers affected by sickle cell disease to learn how to share their voice to advocate for issues that are important to them. Stay tuned – registration will open soon!

March 12, 2022 | 9AM

Where? Virtual or Fairfax Station, VA

Please scan the QR code below to Walk/Run/Bike to help benefit SCDAA

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

December 23, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee reminds the sickle cell community that the COVID-19 pandemic is having another increase in infections. New variants like omicron are emerging, as are common for RNA viruses, and vaccination rates need to consequently improve. Vaccinations can protect against severe illness. A new medication might also help as early treatment for infected individuals.

MARAC Recommendations

• No general recommendation for all individuals with SCD to stay home nor for all to return to in-person activities. Patients and families need to make individualized assessments of the risks and trade-offs of returning to work or school in person. Factors to consider include vaccination status, the rate of COVID-19 and variants in your community, family socioeconomic situation, protective measures in the building (proper ventilation, physical distancing, etc.), mental health needs and educational needs.
• Rare vaccine-related side effects, such as pain crises, have been reported after receiving a COVID-19 vaccine. However, they are not more likely to occur as a result of the COVID-19 vaccine compared to other common vaccines. No serious adverse events have been reported to date, and the risk/benefit ratio is in favor of vaccination for all individuals with SCD over age 5.
• Continue to recommend vaccination against COVID-19.
• Booster shots: All Americans are eligible, except children under 5. We recommend that individuals with SCD should receive a booster dose of the COVID-19 vaccine (Pfizer or Moderna).
• Continue to recommend general precautions like wearing masks, maintaining physical distancing, promoting good ventilation and washing hands. These are public health measures.
• The FDA has granted emergency use authorization of early treatments for people who test positive for coronavirus and who are at high risk for severe COVID-19, including hospitalization or death.
  • FDA announced on Dec. 22 and 23 that two new antiviral pills can be available to treat people with symptomatic COVID-19: Paxlovid (ritonavir plus nirmatrelvir, Pfizer) and Molnupiravir (Merck). Paxlovid is for patients ages 12 and up who weigh at least 88 pounds. It is available by prescription only and would be taken as soon as possible after diagnosis and within 5 days of the start of symptoms. Molnupiravir (Merck) is for adults, also byprescription only, also as soon as possible after diagnosis. MARAC is still learning more about these treatments.
  • Neutralizing monoclonal antibodies (bamlanivimab plus etesevimab (Lilly); casirivimab plus imdevimab (Regeneron); Sotrovimab (Glaxo Smith Kline) have been effective as early treatment for mild, symptomatic COVID-19 in some individuals with SCD [<10d after the test, age 12y+, wt 88 lb+ (40kg+), not hospitalized, not newly on oxygen]. However, these neutralizing antibodies might no longer be effective against the omicron variant of coronavirus. MARAC is monitoring the situation.

1. Please remember that you can take precautions to stop COVID-19. The coronavirus spreads in the tiny droplets breathed out by an infected person. The person might not know that he or she is infected. COVID-19 spreads quickly because many people breathe these contagious tiny droplets in the air.
   • Please stay aware of local conditions that impact the risk of making contact with someone who is infected. Keep track of the rate of new cases of COVID-19, the rate of vaccination against COVID-19 and whether new variants of the coronavirus are appearing near you.
   • Where vaccination rates are low, the coronavirus spreads quickly. Continue to take precautions so that you can reduce your risk of COVID-19 infection: wear masks, maintain physical distance from others, and avoid people who are coughing or otherwise contagious as well as indoor spaces and crowds.
   • Wearing a mask is not officially required in some situations but MARAC strongly advises that individuals with SCD should still wear masks in many situations.
   • Wear a mask if:
     • you must be in a crowded indoor space.
     • you are surrounded by strangers or friends who might have been exposed to people who are sick.
       You can remove the mask when you and all those around you have been vaccinated and you are certain that nobody around you is sick.
2. MARAC continues to advise individuals with sickle cell disease to get vaccinated against COVID-19.
   • Any of the three types of vaccines available in the U.S.A. are safe for individuals with SCD.
   • Vaccinations against coronavirus have now been shown to be safe for millions of people, with a known pattern of temporary aches that go away in about two days. It is rare for people to get severe side effects after receiving the vaccine.
   • The vaccines against coronavirus protect very well against serious symptoms of COVID-19 and reduce the chances of hospitalization and death. Break-through infections after vaccination have resulted in mild cases of COVID-19, not severe.
   • People who are not vaccinated may be barred from some travel and entertainment opportunities.
   • Protect the ones you love. Most senior citizen centers will not allow entry by people who are not fully vaccinated. Young children under 5 are not yet eligible for vaccination and depend on adults around them to be protected from infection.
3. How much riskier is COVID-19 for individuals with SCD? Research indicates that the risk of death from COVID-19 could be 1.5 to 2 times greater for individuals with SCD compared to the general population (based on the Brandow & Panepinto SECURESCD database, U.S. single-institution reports, UK and French databases). While still significant, the risk is not as high as MARAC feared at the beginning of the pandemic.
   • Risk of complications for COVID-19 in SCD is probably higher than in the general population. The rate of COVID-19 hospitalizations is higher because pain or fever from COVID-19 could result in SCD hospitalization.
   • Death and moderate to severe complications are higher for younger SCD patients. Organ damage risk factors such as kidney damage are also higher compared to the general population.
   • There are probably excess deaths during the pandemic because of deferred care for other problems (e.g., poor care in pregnancy, delayed diagnosis of cancer).
   • Individuals with SCD and kidney or lung problems are more likely to have severe COVID-19 infections.
   • People with SCD-SC and SCD-Sbeta+thalassemia can have moderate or severe COVID-19 cases.
   • Over half of the reports of COVID-19 in SCD were associated with intense vaso-occlusive pain or sickle acute chest syndrome.
   • Individuals with SCD can have mild cases of COVID-19.
   • COVID-19 remains dangerous for everyone, especially minority groups.

According to the CDC:

On November 24,2021, a new SaRs variant has been detected. The Omicron variant is expected to spread at a similar rate compared to the original COVID-19 virus. The CDC is currently investigating how effective vaccines are against the Omicron variant. The CDC continues to recommend masking in indoor settings regardless of vaccination status.

SCDAA Mobile recently held their 8th annual toy drive. Supporters donated toys that are to be distributed to families with Sickle Cell Disease. If you missed out on the toy drive you can still donate to SCDAA – Mobile here.