Sickle Cell Trait is a Long-Overlooked Gap in Care for Adolescents

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Dr. Carolyn Rowley and Pat Corley, RN, explain why the new Sickle Cell Trait Awareness Campaign is designed for all middle school, high school, and university students.

In the US, it's estimated that between 1-3 million people have the inherited sickle cell trait (SCT), but because many of those people are asymptomatic, it's possible that they're completely unaware. A new campaign was just launched to address this gap, as it applies to more demographics than most people realize.

After 5 years of effort, the Sickle Cell Trait Awareness Campaign (STAC) was recently launched from the Cayenne Wellness Center, which supports individuals living with sickle cell disease in California. In an interview with HCPLive, Pat Corley, RN, and Carolyn Rowley, PhD, Executive Director, Cayenne Wellness Center, discuss the campaign and the motivations that initiated it.

“With respect to STAC, as The Sickle Cell Trait Campaign, we're proud to say that we were able to launch the campaign last month in January, and yes, it was a long time coming,” Rowley said. “Mainly because we know that newborn screening can save lives.”

The campaign is designed for people in the age range of middle school, high school, and university students.

“Why? Because we know that their parents have received their (results), may or may not have any discussion, but that's the age where people are exploring their sexuality, and we want them to just be aware, just be informed, of their trade status."

"Do you know your status?"

The reason for this target population is because even those who are screened at birth don’t necessarily get follow-ups as they mature.

“We have another one for those who are dating, ‘get tested with your partner,’. So, we really want, particularly that population, to become more familiar with what sickle cell trait is, and knowing their trade status.”

Corley has been taking care of people with sickle cell disease for 30 years, and she’s had many questions on the topics and shared her insight on the importance of this campaign.

“How many people live in the United States that have sickle cell disease?’” she said. “And then, I remembered that when I first started working, there were 100,000 people living in the United States with sickle cell disease. Today, the quoted number of people who live within the United States with sickle cell disease is 100,000, folks. So, what that says to me is that we haven't made progress in terms of informing people.”

For more of the HCPLive interview with Pat Corley, RN, and Dr. Carolyn Rowley:

  1. Sickle Cell Trait is a Long-Overlooked Gap in Care for Adolescents
  2. Raising Awareness of Complications Associated with Sickle Cell Trait
  3. Carolyn Rowley, PhD: Exhaustion is Expected with Sickle Cell Trait
  4. Pat Corley, RN: To Reduce Sickle Cell Rates, Youth Need to Learn About Trait