It’s been 15 years since Julie Vomund had cancer, but its effects still linger.
At 19 years old, Vomund was diagnosed with stage two Hodgkin’s lymphoma, a type of cancer that originates in white blood cells called lymphocytes. One of the side effects her treatment left her with was bleomycin toxicity, which can cause lung damage like pulmonary fibrosis.
“But what that really means is, I can’t be on oxygen. I can’t go on a ventilator. Even anesthesia can be very dangerous,” said Vomund, a St. Louis City resident who is now 35.
Which makes being treated for the novel coronavirus especially risky. So when Missouri announced people with certain underlying conditions that put them at increased risk for severe illness were now eligible to receive the vaccine, Vomund thought it would mean there was finally light at the end of the tunnel.
But the state’s list was limited. And when it comes to cancer, there was no explanation included.
“Does that mean you’re diagnosed with cancer? Does that mean you’re in treatment for cancer? Does that mean you are post cancer treatment?” Vomund said, later adding: “It was a big disappointment.”
With nuance lacking, public health officials, residents and some lawmakers have called for the state to expand on its list of eligible underlying conditions.
Currently the state lists around a dozen conditions that qualify as high-risk, such as chronic kidney disease, intellectual or developmental disabilities such as Down syndrome, pregnancy and more.
While Type 2 diabetes is included, Type 1 diabetes isn’t.
That’s because when crafting its list, the state took into account the conditions the Centers for Disease Control and Prevention identified as being at increased risk. Missouri included all the conditions the CDC listed — except for smoking and obesity (although severe obesity is listed).
Meanwhile, Type 1 diabetes, along with nearly a dozen other conditions like high blood pressure, liver disease, pulmonary fibrosis, asthma and more are listed by the CDC as conditions that “might be at an increased risk” for severe illness, as data is limited.
The CDC notes that its own list is not exhaustive and only includes conditions “with sufficient evidence to draw conclusions.”
“…it is a living document that may be updated at any time, subject to potentially rapid change as the science evolves,” the CDC’s website reads.
Under the state’s current guidelines, those conditions that “might be at an increased risk” aren’t prioritized within a specific tier — leaving some wondering when exactly they would be eligible under the state’s plan.
Shad Burner, the Missouri Department of Economic Development’s southeast regional manager, said during an Advisory Committee on Equitable COVID Vaccine Distribution meeting Thursday that the decision to leave off certain conditions was made between the Department of Health and Senior Services and state leadership.
The standing order signed by Randall Williams, the director of DHSS, says providers shall only vaccinate residents if they fall within one of the eligible tiers or are directed by DHSS to do so. State officials have described the attestation process as an “honor system” and are asked to be truthful when affirming their eligibility.
However, a provision also allows residents to be vaccinated if they receive a doctor’s approval.
“Notwithstanding any provision herein, an individual may be vaccinated if a physician finds that the individual has a unique clinical situation that warrants such an elevation of priority,” the order reads, “such unique clinical situation must be documented in the patient’s chart.”
Last week, Adam Crumbliss, the director of DHSS’ Division of Community and Public Health, told members of Missouri’s Advisory Committee on Equitable COVID Vaccine Distribution that the provision was added to ensure that residents with conditions that “might be at an increased risk” per the CDC, receive input from their physician first.
The CDC recommends that anyone with underlying conditions consult with their healthcare provider.
“It’s not exclusive to say that, ‘None of these could count,’” Crumbliss said, “as much as just it’s probably also important with some of these — based on the data available to this point in time — to go ahead and consult a clinician.”
Scott Clardy, the assistant director of the Columbia/Boone County Department of Public Health and Human Services who attends advisory committee meetings on behalf of the Missouri Center for Public Health Excellence, said he gets questions from providers and residents on the issue and doesn’t have a good answer for them.
Listing out those conditions, would make an even stronger statement that they can be eligible, Clardy said during last week’s meeting.
“I think that really just makes things more equitable across the board,” Clardy said, “because perhaps some people have those conditions, but may not be able to go to the doctor, may not be able to pay for a doctor’s appointment to get that recommendation.”
In a Jan. 16 letter, Rep. Adam Schwadron, a Republican from St. Charles County, urged Parson and Williams to add Type 1 diabetes as an eligible condition. Schwadron said he had drafted the letter in response to a constituent’s concerns, and as of Tuesday had not yet received a response.
“Anything that would make it clear as to who is eligible would be welcomed,” Schwadron said.
He noted in the letter that several studies have found patients with Type 1 diabetes may be at an even higher risk for developing complications from COVID than people with Type 2 diabetes.
A Lancet Diabetes & Endocrinology study published in August analyzed 61.4 million medical records in England and found that people with Type 1 diabetes had nearly three times the odds of dying from COVID and people with Type 2 diabetes had nearly two times the odds compared to people without diabetes.
Another Lancet study published in December found that in Scotland patients with Type 1 diabetes were more than twice as likely to be admitted to a critical care unit or die from COVID and patients with Type 2 diabetes were nearly 1.5 times more likely.
“This is not only the best idea in terms of scientific evidence but fairness as well,” Schwadron wrote.
Lisa Cox, a spokeswoman for DHSS, said late last month that it’s possible the underlying conditions Missouri lists could be adapted if new guidance is received.
Vomund worries that if the state’s list of high-risk conditions isn’t inclusive, it will only put more residents in danger for longer. She hopes to see the state add the CDC’s list of secondary conditions — even if it is in a lower tier — and provide a system for residents without primary care providers to still consult a doctor at no additional cost as to whether they should be vaccinated.
“It’s a troubling thing, where through this whole pandemic, we’ve all been told, ‘Use your best judgment.’ And, I mean, that’s not going great in Missouri, frankly,” Vomund said. “So then to apply that to the vaccine, I think it’s just going to leave a lot of people wondering, ‘When’s it my turn?’”
After speaking with over a dozen people and consulting with her doctors, it was finally Vomund’s turn. Her provider said that while her conditions weren’t explicitly listed, he did not think Vomund would be turned away.
She was able to be added to “essentially an unofficial waitlist process to prevent spoilage” and last Tuesday she received a call that SSM Health would be able to vaccinate her that day.
“They called and (said), ‘Can you be here within two hours?’” Vomund recounted Tuesday. “And I was like, ‘Yes. Yes, I can.’ I didn’t even look at my calendar.”
Vomund never did find out what the specific reason was that led to her appointment, but she said it was described like the process of an airline booking tickets for a flight and not wanting to overbook and risk turning people away.
For Vomund, the experience was emotional.
“When I got that call, I burst into tears,” Vomund said. “When I got the shot, I burst into tears again. And they’re like, ‘Oh, did we hurt you?’ And I was like, ‘No, this is just something I’ve been waiting for.’”
Vomund said she hopes to help others navigate the process, after what was “almost a full-time job for two weeks” in order to confirm she was eligible.
“I’m so excited,” Vomund said. “But was it really a victory if it took that much effort to get something that we want in the arms of everyone?”