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As our nation celebrates Black History Month, the Hemophilia Federation of America would like to recognize the contributions of Black Americans within the bleeding disorders community. This month, we will amplify the stories of Black community members and hope you鈥檒l celebrate them with us.

We recognize our society still has many challenges to address, but Black History Month is about celebration and empowerment. While it is only one month, we seek to honor the contributions of African Americans throughout U.S. history and more specifically the bleeding disorders community all year long. We also want to highlight our new Bleeding Disorders Health Disparities Council, created to strengthen the care of persons with blood disorders by identifying areas of health disparities and inequities, assessing needs, developing action items and initiating change. This work will enable the Council to distribute community data to hemophilia treatment centers, industry, specialty pharmacies, member organizations and other health care providers and stakeholders. We are excited about this new opportunity and look forward to working with many of you as we continue to move forward charting our future.

For more information contact Sr. Manager for Health Disparities & Engagement in Public Affairs, Adrian Palau-Tejeda at a.palau-tejeda@hemophiliafed.org.

 

COMMUNITY CONTRIBUTIONS

Renita Johnson

You can often find Renita serving on committees, participating at various HFA events and with Hemophilia of South Carolina, or advocating on Capitol Hill and at her state legislature. Her story doesn鈥檛 begin there 鈥 as a child, she witnessed her two older brothers go in and out of the hospital with terrible bleeds, and despite exhibiting symptoms, they did not receive an official hemophilia diagnosis until they left their small town in South Carolina and moved to New York. Years later, Renita welcomed her son, Edwin, who also has hemophilia. Throughout her life, she has learned the vital role that education and advocacy plays in the management of her families鈥 health, which is why she has remained visibly active within the bleeding disorders community for so long. We are fortunate to have leaders like Renita!

Dr. Charles R. Drew

Dr. Charles R. Drew (1904-1950), a surgeon and medical researcher, who pioneered blood preservation and transfusions. He challenged the American Red Cross on the ethics of excluding and then segregating Black Americans from the blood supply, became the first Black American examiner for the American Board of Surgery, and worked tirelessly to denounce racist and unscientific policies of the U.S. government throughout his career.

Dr. Tammuella Singleton

Pediatric hematologist Dr. Tammuella Singleton, Division Chief, Pediatric Hematology, and Director of the Mississippi Center for Advanced Medicine鈥檚 Hemophilia Treatment Center in Slidell, Louisiana. Patients and their families have described her as the 鈥渂est hematologist ever鈥 who is 鈥渋ncredibly knowledgeable, thorough and kind鈥 and provides a 鈥渢remendous amount of care and professionalism.鈥 Thank you, Dr. Singleton, for all that you do to assist the bleeding disorders community!

Dr. Paulette Bryant

Dr. Paulette Bryant is a Pediatric Hematology-Oncology Specialist at St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital in Charlotte, N.C. With more than 36 years of experience, she has been a true asset to her patients and their families providing a genuinely warm and light-hearted approach to care. Thank you Dr. Bryant for all that you do to assist the bleeding disorders community!

Bobby Wiseman

Each year, researchers conduct clinical trials to assess medical interventions on various patient populations, often with a goal of producing a cure or at least a mechanism for better disease management. Unfortunately, many studies do not utilize a diverse group of study participants, including bleeding disorders research. There are many explanations as to why this occurs such as conscious and unconscious bias and mistrust of the health care system due to past medical history. However, this hasn鈥檛 stopped Bobby Wiseman who lives with severe hemophilia. He took the lead and worked with his health care provider to improve clinical trials by not only participating in a study, but by using his voice to refine the overall process. Bobby proposed increasing the number of female participants since women make up a large proportion of bleeding disorders patients. He also suggested diversifying the staff that develop questionnaires to address known and unknown misconceptions about a particular group. He recommended the use of video conferencing, texting and phone calls to check in as opposed to in-person meetings. All of his suggestions were made pre-COVID-19, so it is evident that Bobby鈥檚 thinking was way ahead of everyone else. If you think Bobby鈥檚 work stops there, you鈥檇 be incorrect. For nearly 40 years, he has helped lead the annual summer camp at Hemophilia Foundation of Northern California. He has also assisted the chapter as chair of the HFNC walk, coordinated the Blood Brotherhood program, chaired the World Federation of Hemophilia鈥檚 international youth congress all while being a proud foster parent, alongside his husband, to five children.

Henrietta Lacks

In 1951, Henrietta Lacks (1920-1951) sought treatment for ovarian cancer at Johns Hopkins Hospital. During one of her visits, cells were removed from her cervix without her knowledge or permission to be analyzed. Researchers noticed Henrietta鈥檚 cells were extremely special. They were able to be infinitely replicated, something that had yet to be accomplished through previous attempts using tissue from other patients. Henrietta鈥檚 cells, later identified as HeLa cells, became the first immortalized human cell line and one of the most important and widely used cell lines in medical research. They helped to develop drugs for treating herpes, leukemia, influenza, Parkinson’s disease and even bleeding disorders like hemophilia.

Dr. Kizzmekia Corbett

Dr. Kizzmekia Corbett is an immunologist at the National Institutes of Health and more importantly, she is one of the scientists who helped to develop the Moderna mRNA vaccine to combat the coronavirus. Dr. Anthony Fauci, the nation’s top infectious disease expert has described her as a rock star whose work will have a 鈥渟ubstantial impact on ending the worst respiratory-disease pandemic in more than 100 years.”


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