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What We Do

Since 2019, Sickle Cell Medical Advocacy Inc. has been at the forefront of patient healthcare navigation, primarily supporting the sickle cell community through virtual educational resources and online support groups. Our innovative approach includes:

Sickle Cell Healthcare Navigation Certification is an online program where we rigorously train motivated volunteers over ten weeks to become certified Sickle Cell Healthcare Navigators. Following our intensive curriculum based on NIH and ASH guidelines and expert sickle cell management practices, these students become HIPAA-certified and adept in virtual communication with ER/hospital providers.


Health Navigation Assistance - Certified Sickle Cell Healthcare Navigators assist sickle cell patients during pain crises, acting as an informed resource and navigating between patients and healthcare professionals. Our healthcare navigators, trained under the supervision of healthcare professionals from SCMA, are selectively employed to support sickle cell patients who register
with SCMA continuously. Even those not employed are encouraged to apply their skills to assist friends and family, as we offer support and guidance. We aim to ensure every sickle cell patient can access a skilled healthcare navigator during emergency visits, enhancing their care and treatment outcomes. We invite anyone interested in having a certified Sickle Cell Healthcare Navigator to connect with us, ideally before an emergency arises, allowing us to create a personalized plan. However, we welcome contact at any stage and are committed to providing the best possible support with available information.

SCMA also provides:


1) Patient Education for Prevention (PEP) is a patient-focused self-advocacy program consisting of one course, and three support groups:

a) Sickle Cell Health Excellence Learning Program (SCHELP)- The class is conducted over 8 weeks on Sundays via a virtual platform and taught by PowerPoint presentations to Sickle Cell Medical Advocacy registered patients. Patients cover a range of topics. including sickle cell disease awareness, types of sickle cell trait, navigating the emergency room efficiently, SCD pain types and NIH/ASH recommended options for treatment, and IV fluid management.     

 

b) Holistic Management of Sickle Cell Disease: Convened on the first Sunday of each month, this support group explores alternative approaches to enhancing our health journey. We bring health experts from various disciplines who share insights into
available possibilities and how they can positively impact our well-being. They help teach our sickle cell clients alternative ways to manage sickle cell disease (SCD).

 

c) Brotherhood of Warriors (BOW) support group- Initiated by two young men who serve as Sickle Cell Healthcare Navigators at SCMA, BOW extends support to our sickle cell clients while navigating their health challenges. Serving as exemplary role models, they have created a space for male sickle cell clients from various organizations to join in fellowship. BOW stands out as one of the few male sickle cell groups fostering mutual engagement and excellence in health. Diverse experts speak on health issues affecting our male population.

 

d) Mental Empowerment (ME) Time- Taking place on the last Sunday of every month, ME Time is a support group dedicated to our SCMA sickle cell family, focusing on emotional resilience in the context of sickle cell disease within family dynamics, healthcare navigation, and personal accountability. It is an interactive support group created by partnering with another nonprofit organization, Prosightful Counseling, and Consulting Inc. It is led by Dr. Gerald Igboanusi, a licensed mental health counselor, and his assistant a social worker and mental health counselor, US Army Captain Amirah Cotton.

2) Community Engagement Initiatives - Programs designed to reach out, support, and educate the broader community about sickle cell disease, promoting emergency room and hospital education.
3) Healthcare Professional Collaboration Circles - Virtual focus groups for providers and nurses aimed at sharing insights, experiences, and strategies for better care in the context of sickle cell disease.

3) Healthcare Professional Collaboration Circles - Virtual focus groups for providers and nurses aimed at sharing insights, experiences, and strategies for better care in the context of sickle cell disease.

**As part of our ongoing commitment to enhancing the emergency care of individuals with sickle cell disease (SCD), Sickle Cell Medical Advocacy Inc. (SCMA) provides personalized letters to healthcare providers in the emergency room and hospital. We customized these letters and designed them to offer valuable information to support accurate and timely medical management. Each letter follows national guidelines outlined by the National Institutes of Health (NIH) and the American Society of Hematology (ASH), ensuring alignment with evidence-based practices for sickle cell care. Sickle Cell Medical Advocacy Inc. signs the letter, and we provide a callback number for
providers to contact SCMA, verifying the patient's diagnosis and affiliation, which ensures seamless information exchange.

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