CA Cancer Survivor Feels Left Out Amid Bumpy Vaccine Rollout

SAN FRANCISCO, CA — Elizabeth Dalton is trying to stay calm, but it hasn't been easy.

The 62-year-old lung cancer survivor’s daily search for information about when she’ll be eligible for the coronavirus vaccine has left her with more questions than answers, which has only increased her anxiety.

The San Francisco woman underwent a lobectomy in January 2020 to remove a tumor from her lower right lung. Her condition put her at high risk for catastrophic complications should she contract COVID-19, doctors told her.

Dalton spent four days on a ventilator for complications from the surgery, an experience she said left her with physical and emotional scars. She worries that the coronavirus would land her back on life support.

“I never want to be on a ventilator again, and that’s where I see myself if I get COVID,” Dalton said. “It was horrible. You have a tube down your throat. It’s painful. It’s just misery. I was writing notes to people, begging them to just let me die.”

She is among countless others living in fear, uncertain about if and when they qualify for the coronavirus vaccine under newly announced guidelines that she and others feel lacks specifics.

The state Department of Health on Feb. 12 released new guidelines for the vaccine rollout, under which those with underlying medical conditions at highest risk and those with disabilities between the ages of 16 and 64 are eligible to receive the vaccine March 15.

The new guidelines followed a turbulent two-week period in which the state changed course on its policy on multiple occasions.

A tiered rollout that prioritized those with severe underlying conditions was altered in late January because of its complexity and replaced with an age-based tier system, The New York Times reported.

That triggered outrage among those severely ill or with disabilities, who lost their place in line for the vaccine to those 65 and older.

An estimated 4 million to 6 million people with disabilities and underlying medical conditions are eligible under the new guidelines, California Health and Human Services Secretary Mark Ghaly told reporters in a Feb. 12 news conference.

The new guidelines initially offered Dalton hope. But after reading the fine print, her hope turned to confusion and frustration, she said.

The groups listed as being at highest risk include current cancer patients in an immunocompromised state, those with chronic kidney disease (stage 4 or above) and sickle cell disease, among other conditions. Tidy boxes in which Dalton’s condition doesn’t quite fit.

Dalton does appear to fit a separate criterion for those “likely to develop severe life-threatening illness or death from COVID-19 infection,” but the state's process for evaluating her condition hasn't been clearly spelled out in her view.

She's not the only one who believes state health officials have failed to deliver in the messaging department.

"The guidelines seem to be changing every few days, which is confusing people," said Dr. Cary Presant, the past president of the California Division of the American Cancer Society and current chairman of the board of the Medical Oncology Association of Southern California.

"If you wait a day, there may be a different message tomorrow."

Those seeking vaccination in these high-risk groups will be required to provide some form of verification, but officials have not yet determined how the process will work, The San Francisco Chronicle reported.

And the language in the guidelines that health care providers may use their clinical judgment to vaccinate individuals age 16-64 who are deemed to be at the very highest risk for morbidity and mortality from COVID-19 doesn’t offer the level of certainty Dalton, among others, had hoped for.

Presant hasn't reviewed the specifics of Dalton's condition and can't speak specifically about her case. But he said that a recent lung cancer survivor who underwent a lobectomy would be considered high risk in his view and that she is not alone in her anxiety about whether or when she'll be eligible for the vaccine.

"I know that there is confusion on some of the public health officials’ statements, and
you can understand the pressures that they’re under," Presant said. "But it doesn’t help us to forgive their haziness of language that they use sometimes.

"We just hope that they improve, and we hope that people don’t have this high level anxiety like [Dalton] seems to be having,” he added.

Meanwhile, Dalton feels like her life is on hold as she waits for answers that aren't there yet. “I’m angry, and I’m not sure who I’m angry at,” she said. “There should be a much better system across the United States for how these vaccines are distributed and who gets them.”

San Francisco Supervisor Connie Chan, whose district includes the outer Richmond District neighborhood in which Dalton lives, said “the heart of the problem is supply.” She laid that problem at the feet of the administration of former President Donald Trump.

“We should not have to try to categorize people and pit one category of people against another,” Chan said. “There should be enough supply.”

The Trump administration exhausted its vaccine supply and left President Joe Biden with an inadequate backlog, The Washington Post reported on Jan. 15. The former administration’s distribution program underperformed in its distribution efforts, according to a Dec. 29 NBC News analysis.

Outgoing U.S. Surgeon General Jerome Adams defended the Trump administration’s distribution program in a Jan. 3 CNN interview.

Despite a bumpy rollout, all indications are that California is making progress in its vaccine distribution. As of Saturday, 11,480,035 Pfizer and Moderna vaccines have been shipped to California, of which 11,158,090 were delivered and 8,491,076 administered, according to the state’s vaccine dashboard.

Dalton is mindful this vaccine distribution is collectively mankind's challenge of our time and said she understands the complexity of developing a vaccine rollout for people with underlying conditions. It is her view that teachers should be at or near the front of the line and has no problem with other essential workers getting their vaccines before her.

But she believes the way the state has decided which group gets the vaccine first has been arbitrary. “I want them to give more information out,” she said. “I want them to be more specific, and I want to know how they’re categorizing who gets it and who doesn’t. How are they making these decisions? I recently had cancer, and I have only partial amount of my lungs. Why am I excluded?”

Dalton has reason to hope she won’t be excluded for long. Her doctor recently told her that her chances for getting the vaccine on March 15 or shortly afterward are good.

After nearly a year of being on strict orders to avoid exposure, Dalton is eager for a return to a semblance of normalcy.

The pandemic has been challenging for all. But for those such as Dalton, who are at high risk due to preexisting conditions, the past year has been a terrifying experience. She is among many others hoping the vaccine arrives before it’s too late.

The uncertainty is unsettling, she said. “I just want them to hurry up and get some vaccines out,” she said.

Despite the anxieties many are facing, Presant said he doesn't foresee those who are high risk having a problem getting vaccinated and is encouraging those who believe they fall into that category to contact their doctors.

Presant authored "Surviving American Medicine," a book that aims to help medical consumers navigate a complicated health care system. He said patients in high-risk categories should request a note from their doctors confirming their medical condition.

He said doctors can also sign up to be able to administer vaccines directly.

"We know of medical oncologists who are doing this for their cancer patients and patients with severe blood diseases who are at high risk," Presant said. "Patients appreciate very much going to a doctor they know and knowing that they’re being watched carefully."

Despite concerns about visiting health centers amid the pandemic, it’s imperative that cancer patients due for screening tests and treatments not skip their appointments, Presant added. But patients due for injections should inquire whether an oral substitute is available that would allow them to stay home.

Even when the get the vaccines are made available to everyone who wants them, adherence to coronavirus health guidelines will be essential until herd immunity is achieved, Presant said. Those in high-risk categories in particular will need to remain cautious.

He also advised self-care. "Do the mitigation efforts, but at the same time also do things to relieve your anxiety," Presant said. He advised regular exercise, meditation and a healthy diet.

"With regard to physical activity and meditation, you’d be surprised how far that goes in trying to relieve a lot of this anxiety," he said. "It helps you to set your body on a clean and healthy path."

Before the pandemic, Dalton practiced yoga, which helped her cope with stress. But she hasn’t been able to do it on or her own without the motivation an in-person studio provided. She does what she can to deal with the anxiety: taking early morning walks with her husband, Jon; cleaning around the house; and calling friends.

Dalton, whose executive assistant position at a San Francisco tech company was eliminated earlier this month, hopes to do some volunteer work once she’s fully vaccinated and her doctors deem such activities safe. “I thought when I didn’t have to work, I’d be able to help other people, and I can’t help anybody let alone myself at this point,” she said. “That’s frustrating to me.”