When the director of the CDC shared "encouraging news" about the latest wave of COVID deaths, people with disabilities and parents of children with disabilities weren't comforted.
They were horrified.
The good news, Centers for Disease Control and Prevention director Dr. Rochelle Walensky said in a recent interview about deaths among vaccinated people, is that “the overwhelming number of deaths — over 75% — occurred in people who had at least four co-morbidities. So really, these are people who were unwell to begin with. And yes, really encouraging news in the context of omicron.”
What if "four co-morbidities" describes you, or your child?
"It sounds like she’s just being completely written off,” said Jamie Davis Smith, whose daughter Claire, 15, has autism, asthma, epilepsy, intellectual disability, heart and kidney issues. Claire is vaccinated, but her body can't mount a full response to any vaccine.
"So she’s still vulnerable," Davis Smith, 46, of Washington, D.C., said. "That’s being forgotten about.”
Walensky met with disability groups on Friday. The CDC released a statement about the meeting that read, in part: “Dr. Walensky apologized for the hurtful, yet unintentional, statement pertaining to COVID-19 deaths and co-morbidities.”
The statement said Walensky is committed to addressing “devastating disparities and inequities that existed before COVID-19 and that have been made worse by the pandemic.”
Davis Smith said the CDC director's original comment, however unintentional, just reinforced her family's feeling that they're on their own in the pandemic. Claire, like many children with disabilities, has struggled during the pandemic and has lost skills without in-person learning.
“She relies on a lot of hands-on support really for everything, all parts of her education,” Davis Smith, told TODAY. “She also receives all of her therapies through school, physical therapy, occupational therapy, speech therapy, audiology therapy and none of this could really happen effectively at home. So we’ve seen a really big regression in her in all areas.”
Many people in the disability and chronic illness community are worried.
Since the COVID-19 pandemic began, Cole Salerno's life has looked different. The superhero-loving 5-year-old can’t go to school and hasn’t seen friends or family in person. Some weeks he can’t even visit his dad because of exposure risks.
“That’s been really hard for him,” mom Victoria Schiano, 37, of Downingtown, Pennsylvania, told TODAY. “We just try to talk about it and let him share his feelings as much as he needs but it’s really day-by-day.”
Cole has mitochondrial disease, which causes him to have frequent seizures. His body struggles to maintain his blood sugar, he has gastrointestinal issues. IVs go into his heart and other tubes snake into his abdomen to help him eat. While he can walk short distances, he becomes exhausted and mostly uses a wheelchair. On top of that, his immune system is compromised.
“For us, the pandemic has been terrifying from day one," Schiano said. "This is our worst nightmare.”
Despite being vaccinated, Cole recently had COVID-19. He is doing much better, but the family remains worried and vigilant.
When Schiano first heard about CDC director Walensky's comments from a friend, she didn’t believe they were real. But then she read the news coverage.
It’s your mom who has heart conditions. It’s your neighbor who is a type 1 diabetic. It’s your friend who is battling cancer.”
“That’s not really encouraging news,” she said. “The number of people … in this country that have co-morbidities are astronomical. It’s not just the people that you would classify as typically disabled people. It’s your mom who has heart conditions. It’s your neighbor who is a type 1 diabetic. It’s your friend who is battling cancer.”
Rebecca Cokley and two of her children, Jackson, 11, and Kaya, 8, have dwarfism. Throughout the pandemic, they’ve taken extra measure to protect themselves, which meant being really isolated at times. She said her children, including 3-year-old Kendrick, have been "champions" in the adversity.
“There’s still so much that’s not known about who is more likely to get COVID than not. There’s been a lot of misinformation about the virus and how people get it and the additional side effects for people with different types of disabilities,” Cokely, the U.S. disability rights program officer at the Ford Foundation, told TODAY Parents. “Just like everybody else in the disability space and the chronic illness space, our world has just gotten very small.”
"This is not OK. Our community deserves to be treated with respect and dignity."
She said Walensky’s comments have galvanized the disability and chronic illness communities.
“What this has really served to do is unite the disability community in a way that the we haven’t seen since the Affordable Care Act (ACA),” she said. “They’re saying, ‘This is not OK. Our community deserves to be treated with respect and dignity and disabled lives need to be centered in all aspects of COVID.'”
Davis Smith participates in the Little Lobbyists, a group of families with children who have complex medical needs that lobby politicians. Little Lobbyist is one of about 150 organizations that wrote a letter in response to Walensky. An excerpt of the letter follows:
“People with four or more co-morbidities are people with disabilities. People with four or more co-morbidities are also disproportionately Black people, Indigenous people, Latina/o/x and other people of color, poor people, older people, and people who experience intersecting forms of oppression and marginalization that create barriers to quality healthcare, stable housing, and more.
Even in full context, describing the deaths of people with four or more co-morbidities as ‘encouraging’ because they were ‘unwell to begin with’ encapsulates the exact problem that we, people with disabilities and our family members and allies, have faced the entire pandemic: The public health response to COVID-19 has treated people with disabilities as disposable.”
Cokely remains hopeful that the coalition of disability advocates working with the administration will spearhead change.
“(This coalition is) rising above type of disability. It’s rising above party. It’s rising above any of the typical divisions that you would see in a community as diverse as ours," she said. "It gives me faith that we will see the leadership we need for decades to come and it will come from our community because we can’t wait for non-disabled people to wake up.”