'We're still not protecting each other': Some students face greater COVID-19 risks

Oct. 26—In Texas, the question of whether school districts can require students and staff to wear masks during the pandemic has turned bitter and partisan.

But for Latresha Leonard, the question of whether to require masks isn't at all political.

Leonard's 12-year-old son, Shane, has sickle cell disease, a blood disorder that puts him at a higher risk for severe COVID-19. Any type of infection in Shane's body can trigger what's known as a pain crisis, a hallmark of the disease in which sickle cell patients experience intense pain as their misshapen red blood cells block blood flow.

But unlike the last school year, Shane and other children with sickle cell disease have fewer tools to protect themselves and their families.

Gov. Greg Abbott has banned school districts from requiring students and staff to wear facial coverings, an executive order that is currently at the center of multiple lawsuits. And many school districts, including Shane's, can't offer the virtual schooling that existed last year, meaning at-risk students like Shane only have the option of in-person schooling through the public education system.

Vaccines are only available for students 12 and older, although vaccines are expected to be approved for younger children as soon as November.

"Any type of sickness, it'll cause pain in his body," Leonard said about her son's condition.

As communities and politicians battle over how to best educate and care for students amid an ongoing global pandemic, the question for families with medically vulnerable children is a simple one: How can I protect my child?

Dr. Clarissa Johnson, Shane's doctor and a hematologist with the Cook Children's health care system, cares for children with rare blood disorders. A large group of her patients are children with sickle cell disease, a blood disorder that affects an estimated 100,000 Americans, almost all of them Black.

This school year, Johnson said she felt like she had few tools to offer families with children who have sickle cell disease.

"We're hearing, 'there's not going to be a mask mandate,' and we're just basically going to throw everybody back into the Petri dish and see what happens," Johnson said. "That's essentially how I took that. Nothing really has changed, we now have a more contagious variant. But let's just, everybody just go back to school and just live our lives. And that's a recipe for disaster."

'We're still not protecting each other'

Leonard's son, a student at Eagle Mountain-Saginaw Independent School District, doesn't have a virtual learning option or a mask mandate in place in his classroom.

In accordance with Abbott's executive order, the Eagle Mountain-Saginaw school district has not required masks in classrooms.

The district "strongly encourages students and staff to consider the use of a mask as part of personal COVID-19 mitigation," according to a statement on the district's COVID-19 web page. "The District will ensure that students' and employees' choices regarding mask usage will be supported in the District's schools and facilities."

Last year, Shane and his older sister both used the virtual learning option for most of the year, Leonard said, because she was worried that he could get infected. The district is not offering remote learning this school year because "the state did not approve funding for districts to continue offering virtual learning," according to the district's web page. The school continues to offer homebound instruction for those students that are determined to be confined to their home or a hospital for medical reasons, a spokesperson said. The program has been in place since before the pandemic.

Shane, a cheerful seventh grader who is quick to laugh, said he likes being back in school. Recently, he's learned about volcanoes in science class and about the earliest forms of storytelling practiced by cavemen. He's looking forward to his 13th birthday, and to trying out for the basketball team. Shane isn't allowed to play tackle football, but his doctor agreed that he could try basketball only if he was very careful.

Sports can be a risky hobby for kids with sickle cell, as overexertion, dehydration, or even a small injury on the court could cause a life-threatening crisis.

Shane wears a mask in school, but said not all of his classmates do.

Shane and his family are all vaccinated against COVID-19, Leonard said, which makes her a little more confident about his safety in in-person classes. But she still worries.

Almost 30 miles south of the Leonards, in Crowley, another sickle cell family are grappling with a school year they say is less safe than the previous one. Carol Strickland, 61, has sickle cell disease and other conditions that put her at higher risk if she becomes infected with SARS-CoV-2. Her 15-year-old granddaughter, who lives with her, carries the sickle cell trait.

"I've lost so many people in the last two weeks from COVID," Strickland said. "And it's just heartbreaking, absolutely heartbreaking. But yet we're still not protecting each other."

Strickland said she was trying to find a way for her granddaughter to return to virtual learning, and was even considering a private school so that her granddaughter could have a remote learning option. Strickland said life during the pandemic has made her already vigilant lifestyle even more draining to protect herself from infection.

"There are so many different things that, as a sickle cell patient, you had to do even before the COVID. And you have to do even more so after the COVID," she said.

Both the Strickland and Leonard families are part of the Maroon 9 Community Enrichment Organization, a nonprofit that supports communities and families affected by sickle cell disease. Cynthia Banks organized the group after her brother died from sickle cell disease in 2011. He was 49 years old.

Banks said if her brother had lived to see the COVID-19 pandemic, their mother would have had him "on lock."

"He would have been like a little boy in a bubble," Banks said.

Sickle cell and COVID-19: What the research says

When the COVID-19 pandemic began, doctors rushed to determine which chronic illnesses would put patients at more serious risk from the virus. Dr. Julie Panepinto, a longtime researcher of sickle cell disease, decided to create a registry to determine if people with the blood disorder were at greater risk.

"We thought that our patients would most likely be more at risk, because we had seen that with other viral infections," like the flu, Panepinto said.

Panepinto's research ultimately showed that sickle cell patients are at a higher risk both for being hospitalized with COVID-19 and for severe COVID-19 outcomes. Panepinto's registry, which included about 700 people with the disease, ultimately did not have enough patients for her to determine whether sickle cell patients were more at risk of dying from COVID-19 because of their pre-existing condition.

Overall, healthy children are far less likely to become seriously ill from COVID-19 or to die from the disease than adults. But as Delta has become the dominant variant of the virus in the U.S., more kids have become infected and more have become ill from the virus.

Ongoing legal challenges

In July, Gov. Greg Abbott issued an executive order barring any government entity, including school districts, from requiring masks. The order has spurred a string of lawsuits.

Abbott has maintained that decisions about wearing masks and getting vaccinated are personal ones.

"Governor Abbott cares deeply about the health and safety of disabled students, as he does for all Texas students. Since his accident that left him paralyzed, the Governor has worked throughout his career to protect the rights of all those with disabilities in Texas," Abbott spokesperson Renae Eze said in a statement. "It seems that the federal government misunderstands the executive order—it doesn't prohibit anyone in schools from wearing masks, it only prohibits the mandating of masks. Any Texan from any background has the right and ability to wear a mask if they choose — and parents are the best decision-makers for their children."

Abbott's administration is currently suing multiple school districts that implemented mask requirements in violation of his order.

Disability Rights Texas, which advocates on behalf of Texans with disabilities, filed a federal lawsuit in August on behalf of 14 child plaintiffs. The suit, filed against Abbott and other state leaders, argues that banning mask mandates violates the Americans with Disabilities Act and puts students with disabilities at significant risk. A federal judge heard arguments in the trial in October, and the parties are currently waiting for a written ruling.

In Fort Worth, the debate over mask mandates has been as complicated as the statewide back-and-forth. Fort Worth's school district does not currently have a mask mandate in place after four parents of local students sued the school district over a mask requirement that had been issued in August. The mandate is not currently in effect while the lawsuit works its way through the courts.

At this point in the pandemic, researchers have established that the virus can be spread via infectious aerosols that can float in the air, as well as through larger droplets that can travel between people in close proximity. Masks are one of several measures that have been shown to be effective at stopping or reducing the amount of virus that can spread via droplets or smaller aerosols.

Johnson, the Fort Worth hematologist, said requiring masks while COVID-19 cases are high was a "no brainer." One of her patients, a boy with sickle cell disease, returned to school this fall because, at the time, his school district wasn't offering virtual classes.

The student is now hospitalized with COVID-19, Johnson said.

The pandemic has made the already challenging diagnosis of sickle cell disease even more stressful for children and families, Johnson said.

"Before COVID, I don't think they were having to worry about what's happening at school and trying to make sure you're keeping (the child's) mask on while knowing that other kids are not wearing masks and teachers are not wearing masks, and you have no idea who is vaccinated and who's not," Johnson said.

How to help

Sickle cell patients need frequent blood transfusions. If you're eligible to donate blood, you can find a list of local blood drives and make an appointment by visiting redcross.org/give-blood.

How to get help

If you have sickle cell disease, you can get support from the Maroon 9 Community Enrichment Organization by visiting marron9.org or by calling 682-200-9261.

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