‘My true passion is using my love of numbers to help other people around the world’

Joe Hulsizer, 17, a Lake Forest Academy student holds a research project on his laptop that he worked on with help from Jianfeng Xu, vice president and director of the program for personalized cancer care at NorthShore University Health System Research Institute in Evanston, Ill., on Aug. 9. Jose M. Osorio / Chicago Tribune

A love of numbers and an email to NorthShore’s Research Institute may have changed the trajectory of Joe Hulsizer’s future career, while also potentially changing the lives of those with sickle cell.

The 17-year-old Lake Forest Academy student will be entering his senior year this fall with one published paper under his belt and another on the way. His first paper, “Association of Sickle Cell Trait with Risk and Mortality of COVID-19: Results from the United Kingdom Biobank,” was published in the American Journal of Tropical Medicine and Hygiene this summer.

It all began in summer of 2020, when the Winnetka resident’s curiosity was piqued after finding out Black people in the U.S. were dying at a disproportionate rate from COVID-19. Hulsizer hypothesized that the sickle cell anemia trait might have something to do with it. When Hulsizer came across a U.S. Army study that found the chance of sudden death in Black people aged 18 to 28 years old with the trait for sickle cell increased eight times over, he started to connect the data and found that the effects of COVID-19 are similar to the potential triggers for sickle cell crisis or crises.

“I approached NorthShore with the coincidental data because I had reached the end of the line, as far as I could go individually (with my research),” Hulsizer said.

Wanting to go further with his research, he approached Lurie Children’s Hospital with a request for help. But it was an email answered by the head of NorthShore University HealthSystem’s Research Institute that led Hulsizer to Jianfeng Xu, vice president of translational research at NorthShore, and what Hulsizer calls an “unbelievable experience.”

“I was very grateful that NorthShore was willing to listen to this out-of-the-box idea from a high school kid,” Hulsizer said. “It’s pretty surreal to be working in an office where you’re at least 10 years younger than everyone else, and they treat me as an equal.”

Xu said he was excited to see a high school student approach his institution for help with a hypothesis.

“He came with this idea and we worked remotely with him on sickle cell with COVID-19, from there it led to this internship,” Xu said.

The NorthShore internship gives Hulsizer access to hundreds of thousands of subjects’ genetic information in the United Kingdom Biobank — a long-term study that investigates genetic predisposition and environmental exposure to the development of disease. Hulsizer combs through the population study’s data to see where it leads. So far his research found the trend of higher COVID-19 mortality in Blacks who carry the sickle cell trait (SCT) and a significantly higher COVID-19 mortality in Black SCT carriers with preexisting diabetes.

According to Xu, while sickle cell anemia disease primarily affects those of African descent, having two mutations in the Hemoglobin Subunit Beta gene (that makes red blood cells for hemoglobin) is rare. Two bad mutations, you have sickle cell disease. One mutation, you are a carrier of the sickle cell trait, which is more common than the disease — that’s about 8% of the African American population, Xu said.

“For the sickle cell trait, previous research is very limited,” he said. “Most people would say it’s benign, you don’t have to worry about it. But from Joe’s project, we did a little more research and also looked at data that UK Biobank (has). This is the first time we actually looked for the sickle cell trait in terms of common diseases, including the COVID-19 piece, so this is relatively new to the research community, to the clinical community.”

Considering the vast majority of SCT carriers may not be aware of their condition and that the Black population faces a disproportionate burden of COVID-19 deaths among other racial and ethnic groups, these findings suggest special care in the prevention and management of COVID-19 should be considered for Black SCT carriers.

“I started to realize ... when I was doing my research that this sickle cell trait is underresearched and underfunded,” Hulsizer said. “People balk and say it’s a benign thing so people don’t worry about it. But after last summer, we did have significant findings and if we found that, then maybe we’re going to find more.”

That’s why Xu is keen on continuing to work with Hulsizer during his summer breaks from school. Not having any experience in the health field, Hulsizer was not afraid to leap into the arena and see where the data took him. He hopes his ongoing relationship with Xu and NorthShore will help raise awareness about the sickle cell trait and its association with all kinds of common diseases, like diabetes and hypertension.

While there exists a test for newborns around sickle cell disease, Xu says he would like to see a screening developed for adults and the sickle cell trait. Xu said that unless patients asks their primary care physicians for a genetic test, many people are not aware of the trait and simply will not ask their physicians for a test. Therein lies the problem. Xu and his team are already talking about how to develop a simple test for the trait, one that NorthShore can roll out to its primary care community.

“Right away, we’re thinking about how we can translate this sickle cell news for African Americans in a population level for screening, not just for COVID-19,” Xu said. “In the last couple of months, Joe and us are working on another project related to sickle cell, and we find out it’s associated with diabetes and other complications.”

Xu, who came to NorthShore in 2014 with a public health background, said it’s important from a public health perspective to understand one’s risk for different diseases, and then translate those research findings into the clinical setting.

“Most people do not think it’s (sickle cell trait) super dramatic, but it could actually lead to significant health impacts in certain situations,” Xu said. “Everyone is aware when you have co-morbidities, you’re more likely to develop COVID-19, and you’re more likely to have severe symptoms of COVID-19.”

Hulsizer considers himself super lucky to continue working with NorthShore on his research project. He hopes his second paper on sickle cell traits association with other diseases will be published in the next few months.

“It’s an underfunded field (sickle cell research), and just having people willing to raise awareness and actually help people, that’s a level that I never thought would happen,” he said. “I always thought my future was really set on math. But now I realize my true passion is using my love of numbers to help other people around the world.”

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(1) comment


Wow, I haven't read this before. Let's keep everyone safe and healthy. Mask up.

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