Sickle cell trait diagnosis shocks white Georgia lobbyist; advocacy, education at the heart of awareness
Georgia healthcare lobbyist and advocate Andy Lord was shocked when his newborn son tested positive for sickle cell trait. How is that possible, Lord wondered at the time. The pediatricians were sure it was a mistake. But the diagnosis was no error. Lord’s son had the trait and, come to find out, so did he.
It was a life-changing event for the CEO of Georgia Capitol Solutions, an independent lobbying firm specializing in a range of healthcare-related policy. That’s because Lord is white.
Sickle cell disease affects a wide range of populations worldwide: people of African descent, Hispanic populations in Central and South America, Middle Easterners, and those of Asian, Indian and Mediterranean descent, according to the American Society of Hematology. But very few people of European descent are impacted by the illness.
That’s why doctors in Atlanta and Lord himself were so surprised when he tested positive for the trait.
Lord, who is now a lobbyist and board member for the Sickle Cell Foundation of Georgia, says after researching the disease, he realized how serious it is
“It’s really important that we understand that, just even in recent times, since my son has been born, a lot of the provider community, doesn’t even necessarily know what to look for, ask for,” Lord told Tabatha McGhee, the executive director of the Sickle Cell Foundation of Georgia and host of the new series “Unveiling Sickle Cell: Beyond the Pain.”
Lord said during an interview on the show that discovering his son’s sickle cell trait and then his own diagnosis was his first introduction into “understanding what sickle cell truly was, how devastating it can truly be, but also how underequipped at that time our health care system was in recognizing and treating this condition.”
And so began Lord’s journey with the Sickle Cell Foundation of Georgia, at first volunteering, and then working directly for the SCFG.
Lord, though, doesn’t have sickle cell disease. “I want to make sure that we’re very clear,” McGhee said.
“Your son and you have sickle cell trait, not the disease. And so that’s very important for people to know and it’s very different, as well. Sickle cell trait doesn’t have all the chronic pain and all the suffering that goes along with sickle cell disease.”
Sickle cell disease is debilitating, and ultimately, it’s deadly in the sense that it can cause a shorter lifespan in those battling it. The National Institutes of Health reported 100,000 people in the United States and at least 8 million globally are impacted by SCD.
In the United States, African Americans are disproportionately affected. The NIH estimates one in every 13 Black babies born in the U.S. has sickle cell trait, inheriting the gene from one of their parents. One in every 365 Black babies is born with the disease and that means both parents had the trait.
So much of the work of the SCFG is increasing awareness of the disease and advocating for testing and education. Every state and the District of Columbia screen newborns for a host of diseases, including sickle cell. The Foundation in Georgia receives the results of the SCD tests and notifies parents of their child’s status.
McGhee calls the test results “very, very critical because many parents do not know what their child’s status is.”
The danger of not knowing means people with the trait could marry another carrier increasing the likelihood of passing on the disease to a new generation.
“People are getting married not knowing their status and then, you know, two traits get together, and all of a sudden you have a child with sickle cell disease,” McGhee said.
Dr. Rayna Walters knows this first-hand.
“My daughter has sickle cell. She’s actually the first person in the family to actually have sickle cell. There’s several of us in the family with the trait,” Walters told the SCFG.
Walters said she and her daughter Nina Walter’s have turned Nina’s diagnosis into an opportunity. An opportunity to learn about the illness and help others.
“As we learn, we’re traveling and we’re networking and we’re meeting with people, not only to learn more about sickle cell ourselves, but to advocate and get the word out and just spread education and misconceptions, changing misconceptions about sickle cell.”
Nina Walters says having sickle cell disease is “very challenging,” but she believes there’s also a bright side.
-By Shelby Lin Erdman