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Student groups to host sickle cell screening event for Rare Disease Day

Courtesy of Lauren McCutcheon
Members of the GW Chronic Health Advocates hosted an event last semester with Gary Cunningham, a researcher from the Children’s National Research Innovation Campus.

Updated: Feb. 26, 2024, at 3:12 p.m.

Student organizations will partner to host a sickle cell trait screening event in the University Student Center on the rarest day of the year, Feb. 29.

Genetic counselors will administer screenings to students from 70 available kits in the Continental Ballroom from 3 to 6 p.m. to check for the sickle cell trait that causes sickle cell disease — disorders that cause red blood cells to become misshapen and disrupt blood flow — when the gene is inherited from both parents. Leaders in GW Chronic Health Advocates asked Black student groups to help them put on the event for Rare Disease Day because the disease disproportionately affects Black people.

Many people who inherit just one sickle cell gene will never experience complications but should be aware of the condition for “family planning” purposes, according to the National Institutes of Health. About 100,000 Americans have SCD, affecting about one in 365 Black people in the United States, according to the Centers for Disease Control and Prevention.

Lisa Schwartz — an associate professor of biomedical laboratory sciences and a genetic counselor, health care professionals specializing in genetics and inheritable diseases — said she will administer screenings during the event. She said students will receive a finger prick where a blood sample will be taken and transported to Howard University’s Center for Sickle Cell Disease. Researchers in the center will evaluate the hemoglobin — the protein affected by the sickle cell trait and disease.

“We are hoping that participants and others in the community gain a better understanding of Sickle Cell Disease and Trait, as well as rare diseases in general,” Schwartz said in an email.

Schwartz said participants identified to have the sickle cell trait will be contacted by a genetic counselor about three weeks after the screening.

Sultanah Harper, a sophomore and the vice president of membership for CHA, said members will set up a three-station process in the student center’s Continental Ballroom for the event: One station will play an educational video about the disease, participants will complete medical forms and a survey at another and participants will receive a finger prick at the third.

Harper said after the screening participants can take complimentary treats provided by Panera.

“It was our goal to make this event flow nicely and feel as easy and stress-free as possible so that our participants have a good relationship with genetic screening,” Harper said.

Harper said a presentation hosted by Schwartz in September on genetic counseling inspired her to create the event. Harper said she hopes to use all 70 screening kits, educate community members about SCD and encourage people to complete genetic screening.

“I really hope there’s a lot of participation from this here GW community, and overall I hope genetic screenings and, specifically, sickle cell disease screenings become part of GW’s culture in a way and that we can see these types of events every year,” Harper said.

Barbara Harrison, the assistant director for community outreach and communication for Howard’s Center of Sickle Cell Disease and a genetic counselor at the event, said Black people are not the only group affected by sickle cell disease. She said it is imperative to acknowledge that “genes don’t know color.”

“To have a messaging out there that says that this is just a Black disease, it’s dangerous from a practical standpoint because it’s just simply not true,” Harrison said. “But also, that’s how it’s been characterized in this country and therefore has led to significant health disparities and discrepancies, and research funding.”

Jessica Johnson, a second-year graduate student and the president of the Black Public Health Student Network, said members of the group are marketing the event in the Milken Institute School of Public Health to encourage people to register or walk in.

Johnson said it is especially vital for the Black community to get tested because inheriting sickle cell disease can impact a person’s mood and ability to function in every day life, adding that the rate of inheriting the gene is higher among that population.

“It’d be good if somebody who doesn’t know if they have it and they find out that they have it now,” Johnson said. “This event will hopefully bring awareness to them on how they can get the help they need to combat some of those issues that they might have with sickle cell trait.”

Sophomore Eden Parker, the events director for Black Defiance, said she will greet people as they arrive at the event and support members of CHA with its execution.  One of the reasons Black Defiance decided to team up with CHA was because of the lack of awareness within the Black community surrounding the prominence of SCD, Parker said.

“We all collectively felt that it was very important for us to get engaged with sickle cell testing day, with Chronic Health Advocates, and then also to be an advocate of an issue that’s impacting a community that we belong to as Black Defiance,” Parker said.

Melissa Davies-Cole, a senior and community service co-chair for African Students’ Association, said ASA co-sponsored a blood drive last fall with the National Council of Negro Women during National Sickle Cell Awareness Month, which is celebrated annually in September.

“It’s definitely a continued effort, to continue to raise awareness and continue to provide more information resources to people on campus and around the D.C. community,” Davies-Cole said.

Sophomore Lauren McCutcheon, CHA’s vice president of education and advocacy, said Rare Disease Month gives patients and advocates an opportunity to highlight “hidden” diseases. McCutcheon said many people afflicted with a rare disease experience a “diagnostic odyssey” where they must visit many doctors before receiving a diagnosis. She added that 95 percent of rare diseases do not have a treatment approved by the Food and Drug Administration.

The FDA approved gene therapy — which uses genes to treat, prevent or cure diseases and disorders — for the treatment of sickle cell disease in December 2023

“Rare Disease Month allows us patients and advocates to tell our stories and how it affects our lives — because it’s so much more than a diagnosis,” McCutcheon said in a message.

This post was updated to correct the following:

The Hatchet incorrectly reported that a genetic counselor will contact students after their screening to notify if they have SCD. The counselor will notify students if they have the sickle cell trait. We regret this error.

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