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Carlton Haywood Jr., a health equity researcher who advocated for sickle cell disease patients, dies at 45

Dr. Carlton Haywood, Jr. traveled and lectured widely on sickle cell disease. He's pictured here in 2013.

Dr. Carlton Haywood Jr., an assistant professor in the Berman Institute of Bioethics and in the division of hematology at the Johns Hopkins School of Medicine, died Dec. 31 at Johns Hopkins Hospital. The Baltimore resident was 45.

A cause of death was unavailable.

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Carlton Haywood Jr., son of Carlton Haywood Sr., a Ford Motor Credit Co. manager, and Harriett Haywood, a homemaker, was born in Atlanta, and due to the nature of his father’s work, was raised in Miami, Southfield, Michigan, Mobile, Alabama, Nashville, Tennessee, and Roanoke, Virginia, where he graduated from William Byrd High School.

“For the first three years of his life, Dr. Haywood screamed so often and so terribly that his parents, Carlton Sr. and Harriett Haywood, thought they must be doing something wrong,” according to a 2013 Baltimore Sun profile of him. “By 1979, when his sister Tammy was born, they had moved to Alabama, a state that mandated sickle cell testing for all newborns. She didn’t have the disease but carried some traits, so doctors suggested they test their son.”

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The results were “devastating,” his mother told The Sun. “The doctors told us Carlton wouldn’t live through childhood. It was very, very difficult to deal with.”

Sickle cell disease affects approximately 100,000 Americans, and is most common among African Americans, according to the Centers for Disease Control and Prevention.

Despite an unconventional childhood that was shaped by the disease, Dr. Haywood became a straight-A student, and was accepted to the University of Virginia, where he planned to study medicine. But early that first year, he came to realize that he didn’t like working in laboratories, and his adviser suggested another field of study.

“Intro to Bioethics changed my life,” Dr. Haywood told The Sun. “I loved reading about ethical dilemmas in medicine. It presented a whole new way of asking questions.”

"Think of the worst pain you've ever had -- a broken bone or a migraine -- and imagine it as a steady rainfall. Then it blossoms into a thunderstorm that lasts for hours," said Hopkins bioethics professor Carlton Haywood Jr., pictured in 2013, on pain caused by sickle cell disease, which he battled since birth.

He earned a bachelor’s degree in 1999 in religious studies and then obtained a master’s degree in 2003 from Virginia. He moved to Baltimore and completed a doctorate in health policy and bioethics in 2009 from the department of health policy and management at the Johns Hopkins Bloomberg School of Public Health.

“As a Ph.D. student, Carlton was awarded a competitive NIH-funded individual NRSA grant,” according to a Hopkins profile of Dr. Haywood. “He joined the faculty of the Berman Institute and the Department of Hematology with support from the Johns Hopkins Office of the Provost Mosaic Initiative.

“In recognition of his academic achievements, leadership, and numerous contributions to the field, upon graduation with his doctorate, he was also inducted into the Alpha Chapter of the Delta Omega Public Health Honor Society in 2009.”

Because he suffered throughout his life with sickle cell disease, Mr. Haywood became an advocate and champion for those who also suffered from it and worked diligently to improve their lives.

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“Carlton brought a unique perspective to his health equity research, which was informed by his own experiences living with sickle-cell disease, and fervent desire to address the challenges that he and other patients faced,” according to the Hopkins profile. “His dissertation focused on patient-centered care and trust in the medical profession among adults with sickle-cell disease. This research was one of the very first studies to rigorously examine the construction of trust among patients with sickle-cell disease.”

His research was described by Hopkins as “groundbreaking.”

“His scholarship highlighted issues of extreme injustice, challenged assumptions, (such as a lack of interest in clinical trial preparation), and paved the way for improving quality of care for the sickle-cell population,” said the Hopkins profile. “In 2015, he was selected as one of the first recipients of the highly competitive Johns Hopkins University Catalyst Awards to examine how to improve the quality of nursing care for sickle-cell disease patients.”

Despite his own health challenges, Dr. Haywood traveled and lectured widely on sickle cell disease. He stressed that although it was an important public health problem, the research was underfunded.

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Dr. Haywood’s work brought him numerous accolades, and in 2014, Ebony magazine placed him on its Power 100 list, which is “an annual celebration of the most influential and inspiring men and women in the African American community.” He was also one of three national sickle cell experts who testified before Congress.

Dr. Haywood served on Maryland’s Statewide Steering Committee on Services for Adults with Sickle Cell Disease. He was also a member of the National Human Genome Research Institute.

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The Hopkins profile stated that Dr. Haywood would be remembered by his mentees, family and friends for his “brilliance, generosity, kindness, compassion and humility.”

Dr. Haywood, who lived at the Park Charles in downtown Baltimore, enjoyed collecting comic books, watching sci-fi and horror movies, and sipping pink lemonade.

Funeral services were held Jan. 29 at Gill Creek Baptist Church in Columbia, South Carolina.

Mr. Haywood is survived by his father, Carlton Haywood Sr. of Roanoke, Virginia, and mother, Harriett Haywood of Columbia, South Carolina; a brother, Atu Haywood of Houston; and two sisters, Tamara Haywood and Akiah Haywood, both of Columbia, South Carolina.


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