Author Archives: Emma Day

SCDAA Celebrates Black History Month: Billy Garrett, Jr.

Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back. 

Meet Billy Garrett Jr., the first known person with sickle cell disease to play in the NBA. Billy grew up in Chicago, playing competitive basketball despite words of caution from his doctors. To keep playing, Garrett learned to balance hydration, rest and exertion through a process of trial and error that would occasionally lead to crises. His passion and dedication carried him through these obstacles and onto the court as a member of the DePaul Blue Demons, the New York Knicks and the Lakeland Magic. Off the court, we’re honored to have him on our team as one of our celebrity ambassadors. Hear his story and how he learned to play despite the pain.

 

SCDAA Celebrates Black History Month: Miles Davis

Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back. 

We kick off our celebration recognizing world-renowned jazz artist Miles Davis. He struggled with health issues – arthritis, hip-joint problems and pneumonia – but wasn’t diagnosed with sickle cell disease until middle age. He began playing the trumpet at age 13 and at 18 convinced his parents to allow him to move to New York City to study at the prestigious Juilliard School. It was a ploy so he could jam with the musical masters of his day and join the band of his idol, Charlie Parker. He was soon leading his own projects and bands, solidifying a career that spanned decades. His album “Kind of Blue” is one of the most successful and influential jazz albums in history. He passed away in 1991, but his music lives on. Take some time to listen to his music today and pay tribute to this influential sickle cell warrior.

 

In Memory of Carlton Haywood, Jr., Ph.D.

We are devastated to share the news of the passing of Carlton Haywood, Jr., Ph.D., on December 31, 2021. Carlton was an accomplished academic whose research focused on bioethics and sickle cell. His experiences as a sickle cell warrior guided his work as a scholar and an advocate. As such, Carlton was a well-respected and celebrated voice in both the sickle cell and research communities. 
Carlton grew up in Atlanta, Georgia, and never let sickle cell get in the way of his achievements. He received a bachelor’s and master’s degree from the University of Virginia and completed a doctorate of philosophy in health policy and bioethics in the department of health policy and management at the Johns Hopkins Bloomberg School of Public Health. After completing his studies, he became a faculty member at the Berman Institute and the department of hematology at the Johns Hopkins School of Medicine.
“Carlton had a unique perspective as both an academic professor at a prestigious institution and an individual living with sickle cell disease who could link the academic theories to ‘lived experience,'” said Lewis Hsu, M.D., chief medical officer of the Sickle Cell Disease Association of America. “He generated some of the first scholarly publications on the injustices suffered by individuals with sickle cell disease. He called attention to issues that inhibit sickle cell disease care and research and worked effectively to resolve them. His quiet determination was inspiring to me.” 
He was a dedicated sickle cell advocate and spent his career studying important issues to the sickle cell community, including patient-centered care and trust in the medical industry. His research also addressed the intersections of bioethics and clinical research, and his work earned him national recognition and helped inform sickle cell policy. We invite you to read more about Carlton’s life and career in this article.
SCDAA mourns the loss of Carlton, and we send our deepest condolences to his family and friends. A memorial will be planned at a later date.

 

MARAC Advisory Statement: Update About COVID-19

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.

    SCDAA News Advisory: Partial Hold on Gene Therapy Trial

    On December 20, the FDA placed a partial hold on bluebird bio’s clinical program for lovotibeglogene autotemcel (lovo-cel) gene therapy, temporarily stopping testing on study volunteers under age 18. This partial hold was a response to the investigation of one adolescent with sickle cell disease who has persistent anemia (not dependent on transfusion) a year and a half following treatment. Read more.

    Adults can continue enrollment and treatment in bluebird bio studies. Other clinical research studies of gene therapy for sickle cell disease are continuing.

    The clinical research process has many built-in safety precautions, which include the partial hold implemented by the FDA. MARAC will continue to monitor the situation closely on behalf of the individuals and families living with sickle cell disease.

    SCDAA names Regina Hartfield CEO

    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.