Giuliana Grossi

The only way to reduce the prevalence of sickle cell disease (SCD) in the US is by informing and educating all young individuals about sickle cell trait (SCT), Pat Corley, RN, Cayenne Wellness Center, said in an interview with 

As a supportive resource for individuals living with sickle cell disease in California, the 

 identified the adolescent population as the target audience to make an impact on the increasing number of sickle cell disease diagnoses. Corley and Carolyn Rowley, PhD, Executive Director of Cayenne Wellness Center, explained that the new 

Sickle Cell Trait Awareness Campaign (STAC)

 launched in January to raise awareness of sickle cell trait. 

"I think the only way we can do that is to impact those young individuals who will be making decisions about who their partners would be, and their reproductive actions related to those partners," Corley said.

An important motivation for this initiative is that sickle cell trait isn't discussed, and many people are unaware that sickle cell trait affects all populations, not only those that include people of color. Rowley shared that the launch of STAC has garnered attention from key members of the 

Sickle Cell Disease Association of America (SCDAA)

 suggesting promising possibilities for national expansion.

"Every single one of them said, 'we want to do this too.' So, that is soon to come–not right now because we just launched but, give us about 3-4 months... We'll be able to help other states to do this," she said. "

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

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

Raising Awareness of Complications Associated with Sickle Cell Trait

Carolyn Rowley, PhD: Exhaustion is Expected with Sickle Cell Trait

Videos

The Sickle Cell Trait Awareness Campaign (STAC) offers promising possibilities of expanding sickle cell trait education across the country, Dr. Carolyn Rowley and Pat Corley, RN explain.

Pat Corley, RN: To Reduce Sickle Cell Rates, Youth Need to Learn About Trait

 was launched in January after 5 years of efforts from the 

, which supports individuals living with sickle cell disease in California. The initiative is aiming to reach adolescents of all races, because despite sickle cell disease (SCD) being predominant in individuals of Black and Hispanic descent, sickle cell trait affects everyone, and it's not asymptpomatic as was once thought.

"It behooves us to target the athletes and the coaches at the schools, so that they can become aware," Carolyn Rowley, PhD, Executive Director of Cayenne Wellness Center said in an interview with 

. The awareness only means that you make accommodations for them to be able to hydrate, that you make accommodations for when they say 'I need to sit this one out for a moment', that they listened to that."

Individuals with sickle cell trait not only need to know their status to make informed family planning decisions, but also so they can watch out for the possible symptoms.

"There's a rare form of cancer that can actually occur, that we didn't know. And when you over exert, that can be fatal, if it's not attended to," she continued.

Research has shed light on a lot of areas related to sickle cell trait that hadn't been observed before. In addition to that, the societal perspective of chronic illness has also shifted.

"If you're feeling with it, though, back in the day, it was 'push, push, push, push, pain, pain, pain is great,' and they would be without water - we can't allow that to occur," Rowley said. "We don't want that to occur. So, we want people, we want the coaches and the athletes to be aware, it is okay. As a matter of fact, everyone should hydrate."

Winston Abara, MD, and investigators from the Centers for Disease Control and Prevention (CDC) COVID-19 Response team, conducted a cohort study to determine if any of the 3 COVID-19 vaccines have associations with Guillain-Barré syndrome (GBS), a 

GBS was a prespecified adverse event of special interest for monitoring COVID-19 vaccines, according to the study. Historically, associations have been observed between the risk of GBS and vaccines.

The reporting patterns within 21 and 42 days after vaccination with Ad26.COV2.S (Janssen), BNT162b2 (Pfizer-BioNTech), and mRNA-1273 (Moderna) COVID-19 vaccines were used to compare each one and evaluate for any associations with GBS.

Investigators analyzed the relationship between GBS and each vaccine based on reports to the US Vaccine Adverse Event Reporting System (VAERS). The retrospective cohort study included reports submitted December 2020 through January 2022, and case reports of G BS that were verified as meeting the Brighton Collaboration case definition for GBS in adults after COVID-19 vaccination.

The reporting rate of GBS within the determined time frame following vaccination was analyzed for the main outcome, as it related to each vaccine.

Information was gathered on 21 and 42-days post-vaccination of Pfizer-BioNTech, Moderna, or Janssen vaccine for the reporting rate ratios (RRRs) and calculation of intervals. Estimates for observed-to-expect (OE) ratios used published GBS background rates.

Of the total 487,651,785 COVID-19 vaccine doses, the mRNA vaccines, Pfizer-BioNTech and Moderna, made up a large majority of administrations, with Janssen’s viral vector vaccine accounting for less than 4%.

Pfizer-BioNTech: 266,859,784 doses (54.7%)

Data revealed 295 verified reports of individuals who were diagnosed with GBS after their COVID-19 vaccination. The leading majority were White (193, 65.4%), with much lower rates in the following populations: 18 Black individuals (6.1%), 17 Hispanic individuals (5.8%), 12 Asian individuals (4.1%).

Just over 93% of GBS reported documented hospitalization. The rate was slightly higher among men at 57.3% (169 males), and the median age of those with reported GBS was 59 years.

The number of reports made within 21 days of vaccination was 209, and then 253 at 42 days. When looking at GBS reporting rates per 1,000,000 doses, the Janssen vaccine was associated with a higher prevalence compared with the mRNA vaccines.

Per 1,000,000 doses, within 21 days/42 days of vaccination:

The reports at both intervals for individuals who received the Janssen vaccine were disproportionately higher than that of the mRNA vaccines. Investigators stated that the rates of reported GBS were similar at 21 and 42 days when assessing for differences.

Results demonstrated that the OE ratios after the Janssen vaccine was 3.79 within 21 days and 2.34 within 42 days. The ratios for the mRNA vaccines were less than one for both post-vaccination periods.

“In this retrospective cohort study, we found evidence for increased risks of GBS within 21- and 42-day intervals after Ad26.COV2.S (Janssen) vaccination. The absolute risk of GBS after Ad26.COV2.S vaccination was likely on the order of several cases per million doses of vaccine administered,” investigators wrote. “Conversely, we did not find increased risks for GBS after receipt of either mRNA COVID-19 vaccine, suggesting that GBS cases observed after mRNA COVID-19 vaccination may represent background GBS incidence.”

Abara WE, Gee J, Marquez P, et al. Reports of Guillain-Barré Syndrome After COVID-19 Vaccination in the United States. 

 2023;6(2):e2253845. doi:10.1001/jamanetworkopen.2022.53845

Articles

The mRNA vaccines BNT162b2 (Pfizer-BioNTech) and mRNA-1273 (Moderna) showed no risk of Guillain-Barré syndrome post-vaccination.

Guillain-Barré Syndrome Linked to Ad26.COV2.S COVID-19 Vaccine

, which supports individuals living with sickle cell disease in California. Sickle cell trait (SCT) is often asymptomatic so many individuals who inherited it might not be aware unless they reviewed their newborn screening or had genetic testing done.

While sickle cell trait complications are minor compared with those associated with sickle cell disease (SCD), there are reasons to figure out if you're a carrier. In an interview with 

, Pat Corley, RN, and Carolyn Rowley, PhD, Executive Director, Cayenne Wellness Center, explain why sickle cell trait awareness is crucial, especially among adolescents, and what led to the birth of STAC.

"It's not talked about, that's the whole reason for this campaign," Rowley said. "To me it's public health, so we're taking it on because no one else has."

In 2006, newborn screening was implemented, though certain states had already begun. However, even if a newborn's been screened, that doesn't necessarily mean that child, adult, or family, is aware of those results. Until it was recently observed that sickle cell trait does come with symptoms in some cases, it was thought to be completely asymptomatic. 

 parents who had children with sickle cell disease that their child had a disease state, but it was unimportant to inform them that their child had sickle cell trait, which is the carrier state of the disease," Corley explained. 

Since then, the understanding around sickle cell trait has grown.

"We now know that there are things that sickle cell trait predisposes one to, and so, now we have to go back and retract, and determine that we need to have a purposeful walk in this community to inform people about sickle cell trait," Corley continued. "And that there are chances that they can have problems if they overexert, or problems if they go to places where there's less oxygen, that there's a risk for a unusual form of cancer related to sickle cell disease - a kidney cancer - that there are other complications that can happen as a result of sickle cell trait."

Dr. Carolyn Rowley explains, the whole reason for the Sickle Cell Trait Awareness Campaign (STAC) is to start talking about it. 