- People with underlying medical conditions — from cancer to diabetes to obesity — are expressing frustration about not being able to get a COVID-19 vaccine.
- These conditions increase the risk of serious disease if a person develops COVID-19.
- For getting vaccinated, most states have made people ages 65 and older a priority.
- In some places where people with underlying conditions are eligible, there's a shortage of vaccines.
In 1999, Donna Miranda, a legal process clerk from San Jose, California, was diagnosed with dilated cardiomyopathy — a weakened and enlarged heart.
Miranda was placed on Social Security Disability Insurance and quit working.
In August 2018, she experienced massive heart failure and received a heart transplant at the University of California San Francisco (UCSF).
Miranda has been told by her primary care physician and doctors at the UCSF Heart Transplant Clinic that she's at high risk for serious illness if she develops COVID-19 due to the immune suppression from her transplant.
“In all likelihood, if I were to [get] COVID, I would not survive it and that's terrifying,” Miranda told Healthline.
She's tried to get a COVID-19 vaccine several times from both her primary care clinic and transplant clinic — but with no luck.
At age 49, she's not in the 65-and-over age group that's currently the target of her state's vaccination program.
“I think it's unfair that healthy people are allowed and encouraged to get their COVID vaccine ahead of me,” she said. “I feel like my life is in limbo until I can get vaccinated.”
Vulnerable people not always eligible
Millions of Americans with compromised immune systems and other underlying health issues and comorbidities are in that same limbo.
As the COVID-19 vaccines continue to roll out, there's growing frustration and fear among people under age 65 who are immunocompromised or have underlying health conditions that put them at higher risk of severe illness and death from contracting the virus.
And it’s not just the obvious groups such as those with cancer or someone who's had an organ transplant.
For example, according to Annals of Internal Medicine, people with Down syndrome may be up to 10 times more likely to die from COVID-19.
According to the Centers for Disease Control and Prevention (CDC), adults and children of any age with the following conditions are at increased risk of severe illness or death from COVID-19:
- chronic kidney disease
- COPD (chronic obstructive pulmonary disease)
- Down syndrome
- heart conditions such as heart failure, coronary artery disease, or cardiomyopathy
- immunocompromised state from solid organ transplant
- obesity (BMI of 30 kg/m2 or higher but less than 40 kg/m2) and severe obesity (BMI greater than 40 kg/m2)
- sickle cell disease
- type 2 diabetes
The CDC also lists several other conditions that may put you at increased risk for complications from COVID-19:
- asthma (moderate to severe)
- cerebrovascular disease
- cystic fibrosis
- hypertension (high blood pressure)
- weakened immune system from blood or bone marrow transplant, immune deficiencies, HIV, use of corticosteroids, or use of other immune-weakening medicines
- neurologic conditions, such as dementia
- liver disease
- overweight (BMI greater than 25 kg/m2, but less than 30 kg/m2)
- pulmonary fibrosis (damaged or scarred lung tissues)
- thalassemia (a type of blood disorder)
- type 1 diabetes
Zander Hebert, 18, who lives in Encinitas, California, is autistic. He also has epilepsy and intellectual disability.
His physicians say he's at greater risk of getting seriously ill and dying from COVID-19 because of his medical conditions.
His mother, Sophy Chaffee, told Healthline: “What's disturbing is that I and other parents are vaccinated as caregivers. But our kids, who are at greater risk, are now at the back of the line. A friend's son said something like, ‘It's like you matter and we don't.’”
Different criteria in each state
Each state has its own set of eligibility criteria for COVID-19 vaccine distribution.
In California, the vaccines are inaccessible for most people under age 65 unless they're a healthcare worker, first responder, agricultural worker, school teacher, or school employee.
In some counties, some of those groups (such as teachers) aren't eligible yet due to a shortage of vaccines.
If you're under age 65 and have an underlying health condition, or you're immunocompromised, you don't likely qualify for the vaccines.
Last month, California altered its vaccine rollout plan to prioritize recipients based on age rather than occupation or underlying medical condition.
California Governor Gavin Newsom said that the decision will allow the state to scale up more quickly.
“We believe that the cohort 65 and over needs to be prioritized alongside healthcare workers, first responders, food and agricultural workers, and school staff and teachers,” Newsom said.
Advocates seek changes
Andrew J. Imparato is executive director of Disability Rights California, the agency designated under federal law to protect and advocate for the rights of Californians with disabilities.
He said that in California — a state with more than 40 million people — there are millions under age 65 who are in danger.
“Anyone who is at increased risk of dying because of age or underlying health conditions should have priority access to the vaccine,” Imparato told Healthline.
“We’re not saying we want those 65 and over to not get the vaccine. Our message is: Don’t make everybody else wait while you’re vaccinating people over 65,” he said.
Imparato noted that the California policy “prioritizes efficiency over equity. They have chosen to give the vaccine to everyone over 65 and essential workers. As a result of this plan, many people will die unnecessarily.”
Imparato, whose organization has worked to advance the rights of Californians with disabilities in education, employment, independence, health, and safety, said his group and many others are lobbying the state to change this.
“I think California is trying to listen to us and change the plan,” he said. “People with underlying medical conditions were placed behind more than 16 million seniors, healthcare workers, and those in other essential frontline jobs.”
The situation in Virginia
In Virginia, in addition to healthcare personnel, nursing home residents, frontline essential workers, and people ages 65 and up, the state is now vaccinating people ages 16 to 64 who have an underlying medical condition.
But that's no great comfort to Lynne Purse Streeper, 63, from Virginia Beach, who’s a 3-time cancer survivor and had two stem cell transplants.
She hasn't been able to locate a vaccine.
“I am super frustrated,” Streeper told Healthline.
Her doctors have said that her odds of survival are substantially lower than those of a non-transplant patient if she develops COVID-19.
She’s trying to get an appointment at CVS or Walgreens.
“My oncologist didn’t have any vaccine. My internist didn’t either. My transplant center has me on a wait list. The Virginia Beach public health department has me on a wait list and the local hospital system is vaccinating by age,” she said.
Streeper thinks she can get the vaccine this week at CVS, which is supposed to be accepting appointments for cancer patients to get the vaccine.
“I am trying to remain optimistic, but I have never felt more helpless or more like a number,” she said. “I have struggled so hard to survive the last 13 years. It is so hard to watch this process and remain so vulnerable.”
On the Virginia Department of Health website, state officials acknowledge the vaccine supply in the state is “limited.”
Carrie Sharp, 52, from Ruther Glen, Virginia, who has follicular non-Hodgkin’s lymphoma and asthma, said her doctor told her she's at higher risk based on both of these conditions.
She hasn’t been able to get vaccinated yet, either.
“I’m considered group 1B, which is the group getting vaccines in Virginia right now,” Sharp told Healthline. “But the VCU [Virginia Commonwealth University] Massey Cancer Center had their vaccines retracted, so they said it could be a few more weeks.”
People with cancer are anxious
Many people with cancer either don't yet qualify for the vaccine or simply can’t find any.
In addition, several well-known cancer hospitals such as Memorial Sloan Kettering Cancer Center in New York aren't allowed to offer their vaccines to people from across state lines.
Dr. Tobias Hohl, chief of infectious disease service at Memorial Sloan Kettering Cancer Center, told the New York Times that he provides care to patients throughout the region.
But New York state rules authorize the center to treat only state residents.
“It breaks our hearts,” he said. “It’s immensely frustrating to many providers.”
On Friday, New York Governor Andrew Cuomo announced that beginning the week of Feb. 15, he will expand the list of those who can get the vaccine to people with certain comorbidities.
New York Secretary to the Governor, Melissa DeRosa, released a list of which conditions will be included:
- cancer (current or in remission, including 9/11-related cancers)
- chronic kidney disease
- pulmonary disease, including but not limited to COPD, asthma, pulmonary fibrosis, cystic fibrosis, and 9/11 pulmonary diseases
- intellectual and developmental disabilities, including Down syndrome
- heart conditions, including but not limited to heart failure, coronary artery disease, cardiomyopathy, or hypertension
- immunocompromised state, including but not limited to solid organ transplant, immune deficiencies, HIV, use of corticosteroids, use of other immune weakening medicines, or other cause
- severe obesity and obesity
- sickle cell disease or thalassemia
- type 1 or 2 diabetes
- cerebrovascular disease
- neurologic conditions, including but not limited to Alzheimer’s disease and dementia
- liver disease
Message sent to California officials
Dr. Alyssa Burgart, a clinical associate professor of anesthesiology at Stanford University School of Medicine in California, hopes that Governor Newsom follows Cuomo’s lead.
Last week, Burgart wrote a letter to the California Department of Public Health after the department announced its new COVID-19 vaccine eligibility criteria using age rather than risk.
The letter was signed by more than 400 individuals, including 332 California healthcare workers and public health experts.
“While we appreciate that such a move aimed to improve and enhance access to vaccination by simplifying criteria, this move risks the lives of Californians with high-risk health conditions,” Burgart wrote.
“We ask the state to follow the science by prioritizing the needs of Californians with high-risk health conditions and disabilities. Our high-risk Californians cannot wait,” she added.
In the meantime, Miranda tries to stay positive as she waits.
“I am fortunate to have a strong support system, but I still suffer from feelings of isolation and fear over the uncertainty of falling ill,” she said.
“Living with a compromised immune system is hard enough because I know it's something I will have to deal with for the rest of my life, but COVID has added a new dimension of fear to my daily existence,” she said.
To make matters worse, she's classified as an essential worker and was forced to return to work after her 12 weeks of family/medical leave expired over the summer.
“Even as an essential worker, I am unable to get vaccinated because I'm not a healthcare worker or grocery store clerk. Overall, the past 11 months have been extremely stressful,” she said. “Now, when there is finally light at the end of the tunnel with the vaccines, it is frustrating to keep getting pushed further back in line.”