Victoria Smith

As public demand grows for limited supplies of covid-19 vaccines, questions remain about the vaccines’ appropriateness for older adults with various illnesses. Among them are cancer patients receiving active treatment, dementia patients near the end of their lives and people with autoimmune conditions.

Recently, a number of readers have asked me whether older relatives with these conditions should be immunized. This is a matter for medical experts, and I solicited advice from several. All strongly suggested that people with questions contact their doctors and discuss their individual medical circumstances.

Experts’ advice may be helpful since states are beginning to offer vaccines to adults over age 65, 70 or 75, including those with serious underlying medical conditions. Twenty-eight states are doing so, according to the latest survey by The New York Times.

Q: My 80-year-old mother has chronic lymphocytic leukemia. For weeks, her oncologist would not tell her “yes” or “no” about the vaccine. After much pressure, he finally responded: “It won’t work for you, your immune system is too compromised to make antibodies.” She asked if she can take the vaccine anyway, just in case it might offer a little protection, and he told her he was done discussing it with her.

First, some basics. Older adults, in general, responded extremely well to the two covid-19 vaccines that have received special authorization from the Food and Drug Administration. In large clinical trials sponsored by drugmakers Pfizer and Moderna, the vaccines achieved substantial protection against significant illness, with efficacy for older adults ranging from 87% to 94%.

But people 65 and older undergoing cancer treatment were not included in these studies. As a result, it’s not known what degree of protection they might derive.

Dr. Tobias Hohl, chief of the infectious diseases service at Memorial Sloan Kettering Cancer Center in New York City, suggested that three factors should influence patients’ decisions: Are vaccines safe, will they be effective, and what is my risk of becoming severely ill from covid-19? Regarding risk, he noted that older adults are the people most likely to become severely ill and perish from covid, accounting for about 80% of deaths to date — a compelling argument for vaccination.

Regarding safety, there is no evidence at this time that cancer patients are more likely to experience side effects from the Pfizer-BioNTech and Moderna vaccines than other people. Generally, “we are confident that these vaccines are safe for [cancer] patients,” including older patients, said Dr. Armin Shahrokni, a Memorial Sloan Kettering geriatrician and oncologist.

The exception, which applies to everyone, not just cancer patients: people who are allergic to covid-19 vaccine components or who experience severe allergic responses after getting a first shot shouldn’t get covid-19 vaccines.

Efficacy is a consideration for patients whose underlying cancer or treatment suppresses their immune systems. Notably, patients with blood and lymph node cancers may experience a blunted response to vaccines, along with patients undergoing chemotherapy or radiation therapy.

Even in this case, “we have every reason to believe that if their immune system is functioning at all, they will respond to the vaccine to some extent,” and that’s likely to be beneficial, said Dr. William Dale, chair of supportive care medicine and director of the Center for Cancer Aging Research at City of Hope, a comprehensive cancer center in Los Angeles County.

Balancing the timing of cancer treatment and immunization may be a consideration in some cases. For those with serious disease who “need therapy as quickly as possible, we should not delay [cancer] treatment because we want to preserve immune function and vaccinate them” against covid, said Hohl of Memorial Sloan Kettering.

One approach might be trying to time covid vaccination “in between cycles of chemotherapy, if possible,” said Dr. Catherine Liu, a professor in the vaccine and infectious disease division at Fred Hutchinson Cancer Research Center in Seattle.

In new guidelines published late last week, the National Comprehensive Cancer Network, an alliance of cancer centers, urged that patients undergoing active treatment be prioritized for vaccines as soon as possible. A notable exception:  Patients who’ve received stem cell transplants or bone marrow transplants should wait at least three months before getting vaccines, the group recommended.

The American Cancer Society’s chief medical and scientific officer, Dr. William Cance, said his organization is “strongly in favor of cancer patients and cancer survivors getting vaccinated, particularly older adults.” Given vaccine shortages, he also recommended that cancer patients who contract covid-19 get antibody therapies as soon as possible, if their oncologists believe they’re good candidates. These infusion therapies, from Eli Lilly and Co. and Regeneron Pharmaceuticals, rely on synthetic immune cells to help fight infections.

Q: Should my 97-year-old mom, in a nursing home with dementia, even get the covid vaccine?

The federal government and all 50 states recommend covid vaccines for long-term care residents, most of whom have Alzheimer’s disease or other types of cognitive impairment. This is an effort to stem the tide of covid-related illness and death that has swept through nursing homes and assisted living facilities — 37% of all covid deaths as of mid-January.

The Alzheimer’s Association also strongly encourages immunization against covid-19, “both for people [with dementia] living in long-term care and those living in the community, said Beth Kallmyer, vice president of care and support.

“What I think this question is trying to ask is ‘Will my loved one live long enough to see the benefit of being vaccinated?’” said Dr. Joshua Uy, medical director at a Philadelphia nursing home and geriatric fellowship director at the University of Pennsylvania’s Perelman School of Medicine.

Potential benefits include not becoming ill or dying from covid-19, having visits from family or friends, engaging with other residents and taking part in activities, Uy suggested. (This is a partial list.) Since these benefits could start accruing a few weeks after residents in a facility are fully immunized, “I would recommend the vaccine for a 97-year-old with significant dementia,” Uy said.

Minimizing suffering is a key consideration, said Dr. Michael Rafii, associate professor of clinical neurology at the University of Southern California’s Keck School of Medicine. “Even if a person has end-stage dementia, you want to do anything you can to reduce the risk of suffering. And this vaccine provides individuals with a good deal of protection from suffering severe covid,” he said.

“My advice is that everyone should get vaccinated, regardless of what stage of dementia they’re in,” Rafii said. That includes dementia patients at the end of their lives in hospice care, he noted.

If possible, a loved one should be at hand for reassurance since being approached by someone wearing a mask and carrying a needle can evoke anxiety in dementia patients. “Have the person administering the vaccine explain who they are, what they’re doing and why they’re wearing a mask in clear, simple language,” Rafii suggested.

Q: I’m 80 and I have Type 2 diabetes and an autoimmune disease. Should I get the vaccine?

There are two parts to this question. The first has to do with “comorbidities” — having more than one medical condition. Should older adults with comorbidities get covid vaccines?

Absolutely, because they’re at higher risk of becoming seriously ill from covid, said Dr. Abinash Virk, an infectious diseases specialist and co-chair of the Mayo Clinic’s covid-19 vaccine rollout.

“Pfizer’s and Moderna’s studies specifically looked at people who were older and had comorbidities, and they showed that vaccine response was similar to [that of] people who were younger,” she noted.

The second part has to do with autoimmune illnesses such as lupus or rheumatoid arthritis, which also put people at higher risk. The concern here is that a vaccine might trigger inflammatory responses that could exacerbate these conditions.

Philippa Marrack, chair of the department of immunology and genomic medicine at National Jewish Health in Denver, said there’s no scientifically rigorous data on how patients with autoimmune conditions respond to the Pfizer and Moderna vaccines.

So far, reasons for concern haven’t surfaced. “More than 100,000 people have gotten these vaccines now, including some who probably had autoimmune disease, and there’s been no systematic reporting of problems,” Marrack said. If patients with autoimmune disorders are really worried, they should talk with their physicians about delaying immunization until other covid vaccines with different formulations become available, she suggested.

Last week, the National Multiple Sclerosis Society recommended that most patients with multiple sclerosis — another serious autoimmune condition — get the Pfizer or Moderna covid vaccines.

“The vaccines are not likely to trigger an MS relapse or to worsen your chronic MS symptoms. The risk of getting COVID-19 far outweighs any risk of having an MS relapse from the vaccine,” it said in a statement.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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The efforts to vaccinate people 65 and older have strained under the enormous demand that has overwhelmed cumbersome, inconsistent scheduling systems.

The struggle represents a shift from the first wave of vaccinations — health care workers in health care settings — which went comparatively smoothly. Now, in most places, elderly people are pitted against one another, competing on an unstable technological playing field for limited shots.

“You can’t have the vaccine distribution be a race between elderly people typing and younger people typing,” said Jeremy Novich, a clinical psychologist in New York City who has begun a group to help people navigate the technology to get appointments. “That’s not a race. That’s just cruel.”

While the demand is an encouraging sign of public trust in the vaccines, the challenges facing seniors also speak to the country’s fragmented approach, which has left many confused and enlisting family members to hunt down appointments.

“It’s just maddening,” said Bill Walsh, with AARP. “It should be a smooth pathway from signing up to getting the vaccine, and that’s just not what we’re seeing so far.”

Glitchy websites, jammed phone lines and long lines outside clinics have become commonplace as states expand who’s eligible — sometimes triggering a mad dash for shots that can sound more like trying to score a ticket for a music festival than obtaining a lifesaving vaccine.

After being inundated, some public health departments are trying to hire more staff members to handle their vaccination hotlines and specifically target seniors who may not be able to navigate a complicated online sign-up process.

“Just posting a website and urging people to go there is not a recipe for success,” said Walsh.

‘Terribly Competitive’ 

Like many other seniors, Colleen Brooks, 85, had trouble sorting through the myriad online resources about how to find the vaccine where she lives, on Vashon Island in the Puget Sound near Seattle.

“It was an overwhelming amount of information,” she said. “I knew it was here someplace, but it wasn’t easy to find out how to get it.”

After making calls, Brooks eventually got a tip from a friend who had spotted the vaccines being unloaded at their town pharmacy. When she dropped by her health clinic to inquire about how to sign up, it happened they were giving out shots that same day.

“That was totally serendipitous for me, but I actually personally know several seniors who just kind of gave up,” said Brooks.

Finding out how to get a vaccine appointment was more straightforward for Gerald Kahn, 76, who lives in Madison, Connecticut.

Kahn got an email notice from the state’s vaccine registration system telling him to make an appointment, but he ran into problems at the very end of the sign-up process.

“As much as I would pound my finger on the face of my iPad, it didn’t do me any good,” he said.

So Kahn did what many have and called a younger family member, who was able to help him finish signing up.

“I think there are a lot of people my age, maybe the preponderance, who can only go so far into the internet, and then we’re not only stymied but also frustrated,” he said.

When Helen Francke, 92, logged on for a vaccine at the designated time, she discovered the spots available in Washington, D.C., filled up almost instantaneously.

“It was evident that I was much too slow,” she said. “It’s terribly competitive and clearly favors those with advanced computer skills.”

The next week, Francke tried calling and going online — this time with the help of her neighbors — without success.

“If I had had to depend on the D.C. vaccination website and telephone, I’d still be anxious and unsuccessful,” said Francke, who got a shot only after finding information on a neighborhood discussion group that directed her to a hospital.

In Arizona, Karen Davis, 80, ended up on a roundabout quest through state and hospital websites with no clear sense of how to actually book an appointment.

“I kept trying to do it and kind of banged my head against the wall too many times,” she said.

Davis, a retired nurse, called her doctor and the pharmacy and then eventually turned to a younger relative, who managed to book a 5 a.m. appointment at a mass vaccination site.

“I’m sure they did not expect older people to be able to do this,” she said.

Miguel Lerma, who lives in Phoenix, said his 69-year-old mother has been unsuccessful in finding a shot.

“She’s not an English speaker and doesn’t know technology well, and that’s how everything is being done,” said Lerma, 31.

Lerma said it’s especially painful to watch his mother struggle to get the vaccine — because he lost his father to covid last year.

“She’s mourning not only for my dad, but she’s also suffering as an adult now because she depended on him for certain tasks,” Lerma said. “He would’ve handled all this.”

‘Desperate’ Seniors Look for Help  

Philip Bretsky, a primary care doctor in Southern California, said his older patients would typically call him or visit a pharmacy for vaccines like the annual flu shot, rather than rely on novel online scheduling systems.

“That’s not how 85-year-olds have interacted with the health care system, so it’s a complete disconnect,” he said. “These folks are basically just investing a lot of time and not getting anything out of it.”

California’s recent decision to change its vaccination plan and open it up to those over 65 only adds to the confusion.

Bretsky said his patients are being told to call their doctor for information, but he isn’t even sure when his office, which is authorized to give the vaccines, will receive any.

“Patients in this age group want to know that they’re at least being heard or somebody is thinking about the challenges they have,” he said.

There are some local efforts to make that happen.

In the village of Los Lunas, New Mexico, public health workers held an in-person sign-up event for seniors who needed assistance or simply a device connected to the internet.

A Florida senior center recently held a vaccination registration event and a clinic specifically for people over 80 who might not have a computer.

Novich, the clinical psychologist in New York, teamed up with a few other people to create an informal help service for older adults. It began as a small endeavor, advertised through a few synagogues and his Facebook page. They’ve now helped more than 100 people get shots.

“We have a huge number of requests that are just piling up,” said Novich.

“People are really desperate and they’re also confused because nobody has actually explained to them when they are expected to get vaccinated. … It’s a big mess.”

The ongoing shortage of vaccines has led Novich to halt the service for now.

This story is part of a partnership that includes NPR and KHN.

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