Uncategorized Archives - Sickle Cell Disease Association of America Inc. https://www.sicklecelldisease.org/category/uncategorized/ Thu, 02 Jan 2025 19:29:01 +0000 en-US hourly 1 https://wordpress.org/?v=6.7.1 https://www.sicklecelldisease.org/wp-content/uploads/2018/07/favicon-100x100.png Uncategorized Archives - Sickle Cell Disease Association of America Inc. https://www.sicklecelldisease.org/category/uncategorized/ 32 32 In Memory of Frank Reddick https://www.sicklecelldisease.org/2025/01/02/in-memory-of-frank-reddick/ Thu, 02 Jan 2025 19:29:01 +0000 https://www.sicklecelldisease.org/?p=7444 It is with great sadness that SCDAA shares the news of the passing of Frank Reddick on Dec. 23, 2024. Frank was the president and CEO of the Sickle Cell Disease Association of Florida, an SCDAA member organization headquartered in Tampa. He was a steadfast sickle cell advocate and was the head of the Florida […]

The post In Memory of Frank Reddick appeared first on Sickle Cell Disease Association of America Inc..

]]> It is with great sadness that SCDAA shares the news of the passing of Frank Reddick on Dec. 23, 2024. Frank was the president and CEO of the Sickle Cell Disease Association of Florida, an SCDAA member organization headquartered in Tampa. He was a steadfast sickle cell advocate and was the head of the Florida state sickle cell chapters. As a former Tampa city councilman, Frank was a respected leader in his local community. SCDAA sends our sincerest condolences to his family, friends and loved ones. Click here to read more about Frank.

The post In Memory of Frank Reddick appeared first on Sickle Cell Disease Association of America Inc..

]]> SCDAA Statement: CMS Cell and Gene Therapy Access Model https://www.sicklecelldisease.org/2024/12/05/scdaa-statement-cms-cell-and-gene-therapy-access-model/ Thu, 05 Dec 2024 21:09:53 +0000 https://www.sicklecelldisease.org/?p=7433 Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell disease.  The Sickle Cell Disease Association of America Inc. (SCDAA) is pleased that the manufacturers of these two FDA-approved gene therapy treatments have entered into agreements with the Centers for Medicare & Medicaid Services […]

The post SCDAA Statement: CMS Cell and Gene Therapy Access Model appeared first on Sickle Cell Disease Association of America Inc..

]]> Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell disease.  The Sickle Cell Disease Association of America Inc. (SCDAA) is pleased that the manufacturers of these two FDA-approved gene therapy treatments have entered into agreements with the Centers for Medicare & Medicaid Services (CMS) to participate in the Cell and Gene Therapy (CGT) Access Model. These cutting-edge treatments are poised to make a difference in the lives of many sickle cell warriors, but their high price tags are a barrier to access. The CGT Access Model is a promising effort to reduce cost for these potentially curative therapies for eligible individuals, allowing more patients to benefit from these significant advancements in treating diseases. According to an announcement from the Department of Health and Human Services, the model “will test outcomes-based agreements for cell and gene therapies, with the aim to improve health outcomes, increase access to cell and gene therapies, and lower health care costs.” We are also heartened to see that the model will provide fertility preservation for patients, marking an important acknowledgment of quality-of-life standards for our community.

The Model will launch in January 2025, and all 50 states may choose to begin participation anytime between January 2025 and January 2026. SCDAA looks forward to working with our community-based organizations and other stakeholders to advocate for state enrollment. The CGT Access Model will provide crucial support to patients where available, and we encourage full participation across the country.

Read the full statement from the Centers for Medicare and Medicaid Services.

The post SCDAA Statement: CMS Cell and Gene Therapy Access Model appeared first on Sickle Cell Disease Association of America Inc..

]]> Sickle Cell Awareness Month 2024 https://www.sicklecelldisease.org/2024/08/21/sickle-cell-awareness-month-2024/ Wed, 21 Aug 2024 18:10:17 +0000 https://www.sicklecelldisease.org/?p=7268 All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the list below to find an event near you. Alabama Sept. 22: Annual Sickle Cell Walk-A-Thon | Dothan, AL Hosted by the Southeast Alabama Sickle Cell Association, Inc. California Sept. 18-21: 16th Annual SCD Educational Summit | […]

The post Sickle Cell Awareness Month 2024 appeared first on Sickle Cell Disease Association of America Inc..

]]> All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the list below to find an event near you.

Alabama

California

Connecticut

Delaware

Florida

Georgia

Illinois

Kansas

Louisiana

Maryland

Michigan

Minnesota

Missouri

New Jersey

        Oregon

        South Carolina

          Texas

          Virginia

          The post Sickle Cell Awareness Month 2024 appeared first on Sickle Cell Disease Association of America Inc..

          ]]>                     CHW P.O.W.E.R Award https://www.sicklecelldisease.org/2024/08/19/chw-award-2024/ Mon, 19 Aug 2024 14:46:17 +0000 https://www.sicklecelldisease.org/?p=7254 CLICK HERE TO LEARN MORE AND MAKE A NOMINATION Do you know a community health worker who exemplifies excellence and commitment to the sickle cell community? Nominate them for a SCDAA P.O.W.E.R CHW Award! The deadline to nominate someone is Friday, August 23. Awards will be granted during the Annual National Convention in October.

          The post CHW P.O.W.E.R Award appeared first on Sickle Cell Disease Association of America Inc..

          ]]>

          CLICK HERE TO LEARN MORE AND MAKE A NOMINATION

          Do you know a community health worker who exemplifies excellence and commitment to the sickle cell community? Nominate them for a SCDAA P.O.W.E.R CHW Award! The deadline to nominate someone is Friday, August 23. Awards will be granted during the Annual National Convention in October.

          The post CHW P.O.W.E.R Award appeared first on Sickle Cell Disease Association of America Inc..

          ]]>                     WHO Publishes New Guidelines for SCD Management in Africa https://www.sicklecelldisease.org/2024/07/17/who-publishes-new-guidelines-for-scd-management-in-africa/ Wed, 17 Jul 2024 18:07:07 +0000 https://www.sicklecelldisease.org/?p=7181 The World Health Organization (WHO) recently published a comprehensive package of interventions for sickle cell disease management in Africa. The package outlines a holistic and integrated approach to disease management. This information is useful for the general context of sickle cell advocacy. Current and former members of SCDAA’s Medical and Research Advisory Committee (MARAC) were […]

          The post WHO Publishes New Guidelines for SCD Management in Africa appeared first on Sickle Cell Disease Association of America Inc..

          ]]>           The World Health Organization (WHO) recently published a comprehensive package of interventions for sickle cell disease management in Africa. The package outlines a holistic and integrated approach to disease management. This information is useful for the general context of sickle cell advocacy. Current and former members of SCDAA’s Medical and Research Advisory Committee (MARAC) were among the co-authors.

          READ MORE

          The post WHO Publishes New Guidelines for SCD Management in Africa appeared first on Sickle Cell Disease Association of America Inc..

          ]]>                     SCDAA Statement: Know Your Rights in the ER https://www.sicklecelldisease.org/2024/06/20/scdaa-statement-know-your-rights-in-the-er/ Thu, 20 Jun 2024 16:30:43 +0000 https://www.sicklecelldisease.org/?p=7146 Know Your Rights in the Emergency Department – Biden Administration Releases New Guidance The Centers for Medicare & Medicaid Services (CMS) is promoting new resources to remind individuals about their rights in the emergency room. Under the Emergency Medical Treatment and Labor Act, better known as EMTALA, all hospitals that participate in the Medicare program […]

          The post SCDAA Statement: Know Your Rights in the ER appeared first on Sickle Cell Disease Association of America Inc..

          ]]>           Know Your Rights in the Emergency Department – Biden Administration Releases New Guidance

          The Centers for Medicare & Medicaid Services (CMS) is promoting new resources to remind individuals about their rights in the emergency room. Under the Emergency Medical Treatment and Labor Act, better known as EMTALA, all hospitals that participate in the Medicare program are required to provide medical screening exams for individuals arriving at hospital emergency departments to determine if the person has an emergency medical condition. If an emergency medical condition is confirmed, hospitals must provide stabilizing medical treatment (or, if unable to stabilize the person within its capability), to appropriately transfer the patient.

          SCDAA has heard countless stories of SCD warriors receiving inadequate care or even no care at all in emergency departments across the country. Under EMTALA, hospital emergency departments are required to:

          1. Give you an appropriate medical screening.
          2. Treat you until your condition is stable if you are found to have an emergency medical condition.
          3. Transfer you if necessary.

          Learn more here.

          If you believe your EMTALA rights have been violated, CMS now allows you to file a complaint online. You can file anonymously or provide contact information. The federal government and the states will determine if an investigation is needed. If so, the federal government will review the case and determine if a hospital violated EMTALA – the process can take weeks or months depending on the complaint. Filing an EMTALA complaint is not a legal action. You are helping to make sure hospitals stabilize emergency medical conditions and follow the law.

          If a hospital or a physician is found to have violated EMTALA, the federal government can impose a civil monetary penalty and/or may exclude physicians from participating in the Medicare and Medicaid programs.

          LINKS & RESOURCES

          For Warriors

          For Providers

          The post SCDAA Statement: Know Your Rights in the ER appeared first on Sickle Cell Disease Association of America Inc..

          ]]>                     Statement on the Inclusion of DEI in Medical School Curriculum https://www.sicklecelldisease.org/2024/05/14/scdaa-statement-on-the-inclusion-of-dei-in-medical-school-curriculum/ Tue, 14 May 2024 21:24:22 +0000 https://www.sicklecelldisease.org/?p=7081 SCDAA joins the National Medical Association, the American Medical Association, the American Association of Medical Colleges, and other groups, in advocating for DEI programs in medical institutions. Sickle cell disease (SCD) is a serious and complex disease that affects a disproportionate amount of people of color in the United States. As such, it exists in […]

          The post Statement on the Inclusion of DEI in Medical School Curriculum appeared first on Sickle Cell Disease Association of America Inc..

          ]]>           SCDAA joins the National Medical Association, the American Medical Association, the American Association of Medical Colleges, and other groups, in advocating for DEI programs in medical institutions. Sickle cell disease (SCD) is a serious and complex disease that affects a disproportionate amount of people of color in the United States. As such, it exists in the contexts of racism, socio-economic disparities and unequal levels of advanced care, research funding and national attention. Medical, scientific and governmental experts have called for the explicit education of SCD, the impact of race on health outcomes and stigma in medical institutions to advance care and research for this population. The promotion of diversity, equity and inclusion (DEI) to the medical workforce is vital to the advancement and survival of the patient population living with SCD. Efforts to eliminate inclusive policies and opportunities in medical education obstruct the progress toward a more diverse and equitable health care workforce. It is imperative that medical school admission offices actively work toward creating diverse environments and prioritize the success of students from all backgrounds.

          Additional Reading:

          The post Statement on the Inclusion of DEI in Medical School Curriculum appeared first on Sickle Cell Disease Association of America Inc..

          ]]>                     In Memory of Monica Rockwell https://www.sicklecelldisease.org/2024/04/24/in-memory-of-monica-rockwell/ Wed, 24 Apr 2024 19:47:53 +0000 https://www.sicklecelldisease.org/?p=7053 It is with great sadness that SCDAA shares the news of the passing of Monica Rockwell, executive director of SWGA Sickle Cell Awareness, on April 10, 2024. Monica was a tireless advocate and dedicated community health worker. She was a steadfast supporter of SCDAA’s education and outreach efforts and worked with Kevin Amado, our Senior […]

          The post In Memory of Monica Rockwell appeared first on Sickle Cell Disease Association of America Inc..

          ]]>           It is with great sadness that SCDAA shares the news of the passing of Monica Rockwell, executive director of SWGA Sickle Cell Awareness, on April 10, 2024. Monica was a tireless advocate and dedicated community health worker. She was a steadfast supporter of SCDAA’s education and outreach efforts and worked with Kevin Amado, our Senior Community Impact and Education Manager, to develop a new CHW training program. She was a presenter during our 2022 and 2023 Annual National Conventions and was a reoccurring guest speaker for our P.O.W.E.R ECHO CHW Trainings. We are honored to have had the chance to learn from her and grateful for the time she shared with our warriors, caregivers and SCDAA team. Our sincerest condolences go out to her family, friends and loved ones. Her impact will not be forgotten. Click here to read more about Monica.

          The post In Memory of Monica Rockwell appeared first on Sickle Cell Disease Association of America Inc..

          ]]>                     SCDAA promotes Kevin Amado Jr. https://www.sicklecelldisease.org/2024/03/26/scdaa-promotes-kevin-amado-jr/ Tue, 26 Mar 2024 20:48:22 +0000 https://www.sicklecelldisease.org/?p=7025 The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, promoted Kevin Amado Jr. to senior community impact and education manager. Amado joined the association in 2020 and brings 20 years of experience as a health educator, case manager, community health worker and […]

          The post SCDAA promotes Kevin Amado Jr. appeared first on Sickle Cell Disease Association of America Inc..

          ]]>           The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, promoted Kevin Amado Jr. to senior community impact and education manager. Amado joined the association in 2020 and brings 20 years of experience as a health educator, case manager, community health worker and certified health insurance navigator.

          As senior community impact and education manager, Amado develops and implements community health worker training programs and identifies community resources for health workers, organizations and members of the sickle cell community. In addition, he coordinates Sickle Cell Disease Association of America programs and efforts in communities nationwide.

          Prior to joining the Sickle Cell Disease Association of America, Amado served as a case manager for Health Care Access Maryland’s Certified Navigator Connector Program. He was a community health worker with Healthy Howard and a senior health education specialist with the Virginia Department of Health. He has held other social services positions in Maryland and Virginia.

          Amado holds a Master of Public Administration from the University of Baltimore and a Bachelor of Science in community health education from Morgan State University. He lives in Baltimore.

          The post SCDAA promotes Kevin Amado Jr. appeared first on Sickle Cell Disease Association of America Inc..

          ]]>                     The Nod to “Naz” Exhibit https://www.sicklecelldisease.org/2024/03/07/the-nod-to-naz-exhibit/ Thu, 07 Mar 2024 22:21:27 +0000 https://www.sicklecelldisease.org/?p=7012 During our 50th Annual National Convention in 2023, SCDAA was proud to exhibit the artwork of Hertz Nazaire at a pop-up exhibit. Known for his advocacy work and “Finding Your Colors” adult coloring book series, Hertz created mixed-media visual art reflective of his personal experiences with pain and sickle cell disease. He died of sickle […]

          The post The Nod to “Naz” Exhibit appeared first on Sickle Cell Disease Association of America Inc..

          ]]>           During our 50th Annual National Convention in 2023, SCDAA was proud to exhibit the artwork of Hertz Nazaire at a pop-up exhibit. Known for his advocacy work and “Finding Your Colors” adult coloring book series, Hertz created mixed-media visual art reflective of his personal experiences with pain and sickle cell disease. He died of sickle cell-related complications at the age of 48 in 2021.

          Hertz immigrated from Port-au-Prince, Haiti, when he was eight years old. His childhood in Haiti inspired the colors in his large, vibrant paintings, he said. Hertz began painting in New York City, where he lived with his mother before moving to Bridgeport, Connecticut. He studied art at The Art Institute of Fort Lauderdale and University of Bridgeport.

          During 2024, this exhibit will be traveling across the country. Visit www.hertznazairegallery.com to learn more.

          The post The Nod to “Naz” Exhibit appeared first on Sickle Cell Disease Association of America Inc..

          ]]>