In the Vaccine Scramble, Cancer Patients Are Left Behind

Those with compromised immune systems are often advised to get the shots under medical supervision, but their cancer centers can’t always provide them.

A doctor in Arizona says her cancer patients are so desperate to get vaccinated against Covid-19 that they plan to volunteer at a stadium vaccination site. A woman in New Jersey with colon cancer can’t sign up for a vaccine appointment because her cancer center, in New York, is authorized to vaccinate only state residents. A cancer patient in Maryland refreshes and refreshes her computer, but can’t find an available vaccination appointment.

Facing conflicting guidance and logistical chaos, many cancer patients are struggling to navigate the bumpy rollout of the Covid-19 vaccination campaign. Ideally, cancer patients who take immunosuppressant medications should receive vaccinations under the care of a doctor, or in a cancer center, where they can be closely monitored and encounter fewer people than they would at a mass distribution site. But the limited availability of the vaccine, plus the havoc and confusion surrounding the rollout, leaves patients grasping for answers.

“It’s really frustrating when you’re a stage four cancer patient and you can’t get on the list,” said Connie Johnson, 62. “Cancer is a life sentence. But Covid is a death sentence.”

Ideally, patients would receive the vaccines at cancer centers, said Dr. Steven Pergam, infection prevention director at Seattle Cancer Care Alliance and co-leader of the National Comprehensive Cancer Network’s Covid-19 vaccine committee. In addition to the potential of contracting Covid-19 and other pathogens at a mass vaccination site, cancer patients who suffer from fatigue may have trouble standing in line. But as vaccination efforts across the country shift to large-scale sites like stadiums, cancer centers may not have shots available.

“It becomes a really challenging experience for these patients to negotiate and navigate a complex system,” he said. He recommends that patients ask their doctors if there are any options, like a drive-through, at a vaccination site, and also encourage any eligible members of their household to get vaccinated.

Even when cancer centers do have vaccine doses available, the state-by-state nature of vaccination rules complicates patient care. Some major cancer centers cannot offer vaccines to patients from across state lines, said Dr. Tobias Hohl, chief of infectious disease service at Memorial Sloan Kettering Cancer Center in New York. He provides care to patients from throughout the tristate area, he said, and 10 percent of the center’s patients are international, 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.”

Ms. Johnson paused her chemotherapy treatment when she learned that vaccines were approved, hoping to optimize her immune response to the shot. She lives in Maricopa County, Ariz., which is currently vaccinating people in phase 1B. She’s in the next group, 1C. If she isn’t vaccinated in the next month, she said, she’ll have to resume chemotherapy, even though the treatment may weaken her immune system and potentially make the vaccine less effective for her. “I can’t wait that long,” she said. “I just have to hope it’s OK.”

Ms. Johnson is part of a Facebook group for cancer patients, many of whom express rage and frustration over the vaccine roll out. “It’s a full-time job just managing chemo and side effects,” she said. “To have to go through all of this confusion — I think a lot of them are going to throw up their hands.”

According to the American Cancer Society, initial studies testing the Covid-19 vaccines did not include people receiving treatments, like chemotherapy, that suppress the immune system. Of the people included in the Pfizer-BioNTech vaccine trials, 3.7 percent were identified to have a history of malignancy at the time of reporting, said Dr. Pergam, but the assumption is that they are patients with a history of cancer, like surgically cured melanoma, and not patients under active treatment. As a result, it’s not clear how cancer patients in active treatment will respond to the vaccine.

“This has been a complete — I won’t say disaster, but it’s been pretty close,” said Dr. Hanny Al-Samkari, hematologist and clinical investigator at the Massachusetts General Hospital and Harvard Medical School. Cancer patients are receiving “mixed messaging,” he said, and the guidance they get largely depends on their state. Every day he receives a deluge of messages from patients asking if they qualify to receive the vaccine yet (in his state, the answer is largely no). One drove four hours to find a vaccination site. “It’s the Wild West,” he said.

He urged cancer patients to consult with their doctors to coordinate the timing of the vaccine in line with their treatment, unless they are in remission, were treated a long time ago or are receiving only hormonal treatment for breast or prostate cancer, said Dr. Tomasz Beer, a professor at the Oregon Health and Science University’s School of Medicine and deputy director of the school’s Knight Cancer Institute.

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Answers to Your Vaccine Questions

Currently more than 150 million people — almost half the population — are eligible to be vaccinated. But each state makes the final decision about who goes first. The nation’s 21 million health care workers and three million residents of long-term care facilities were the first to qualify. In mid-January, federal officials urged all states to open up eligibility to everyone 65 and older and to adults of any age with medical conditions that put them at high risk of becoming seriously ill or dying from Covid-19. Adults in the general population are at the back of the line. If federal and state health officials can clear up bottlenecks in vaccine distribution, everyone 16 and older will become eligible as early as this spring or early summer. The vaccine hasn’t been approved in children, although studies are underway. It may be months before a vaccine is available for anyone under the age of 16. Go to your state health website for up-to-date information on vaccination policies in your area

You should not have to pay anything out of pocket to get the vaccine, although you will be asked for insurance information. If you don’t have insurance, you should still be given the vaccine at no charge. Congress passed legislation this spring that bars insurers from applying any cost sharing, such as a co-payment or deductible. It layered on additional protections barring pharmacies, doctors and hospitals from billing patients, including those who are uninsured. Even so, health experts do worry that patients might stumble into loopholes that leave them vulnerable to surprise bills. This could happen to those who are charged a doctor visit fee along with their vaccine, or Americans who have certain types of health coverage that do not fall under the new rules. If you get your vaccine from a doctor’s office or urgent care clinic, talk to them about potential hidden charges. To be sure you won’t get a surprise bill, the best bet is to get your vaccine at a health department vaccination site or a local pharmacy once the shots become more widely available.

Probably not. The answer depends on a number of factors, including the supply in your area at the time you’re vaccinated. Check your state health department website for more information about the vaccines available in your state. The Pfizer and Moderna vaccines are the only two vaccines currently approved, although a third vaccine from Johnson & Johnson is on the way.

That is to be determined. It’s possible that Covid-19 vaccinations will become an annual event, just like the flu shot. Or it may be that the benefits of the vaccine last longer than a year. We have to wait to see how durable the protection from the vaccines is. To determine this, researchers are going to be tracking vaccinated people to look for “breakthrough cases” — those people who get sick with Covid-19 despite vaccination. That is a sign of weakening protection and will give researchers clues about how long the vaccine lasts. They will also be monitoring levels of antibodies and T cells in the blood of vaccinated people to determine whether and when a booster shot might be needed. It’s conceivable that people may need boosters every few months, once a year or only every few years. It’s just a matter of waiting for the data.

Employers do have the right to compel their workers to be vaccinated once a vaccine is formally approved. Many hospital systems, for example, require annual flu shots. But employees can seek exemptions based on medical reasons or religious beliefs. In such cases, employers are supposed to provide a “reasonable accommodation” — with a coronavirus vaccine, for example, a worker might be allowed to work if they wear a mask, or to work from home.

If you have other questions about the coronavirus vaccine, please read our full F.A.Q.

For instance, those who are on chemotherapy may have the best chances of mounting an immune response if the vaccine is given when their white blood cell counts are not at their lowest level, Dr. Beer said. Recommendations for patients with leukemia or lymphoma who are in treatment or had a recent bone marrow transplant are particularly complex and absolutely require consultation and coordination with an oncologist, he stressed.

While some may worry about the risks of encountering a crowd at a mass vaccination site, Dr. Al-Samkari advises patients to receive the doses wherever they are available, as long as they wear masks and keep their distance from other people in line. “Anxieties are clearly well-founded,” he said. “But we need to get shots in arms.”

In general, people with cancer should get the vaccine “as soon as they can, wherever they can,” said Dr. Carol Ann Huff, clinical director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins and one of the authors of the National Comprehensive Cancer Network guidelines on Covid-19 vaccines for cancer patients. There are some caveats: Patients who receive a bone-marrow transplant or CAR-T therapy should wait at least three months before receiving the vaccine, she said.

But, depending on the level of virus transmission in a patient’s community, it might be safer to wait to receive the vaccine. If there’s a high level of transmission in the community, “the risks might outweigh the benefits of waiting,” Dr. Beer said. Patients with active cancer should connect with their oncologist before receiving the vaccine, he advised, unless they are in remission, were treated a long time ago or are receiving only hormonal treatment for breast or prostate cancer.

Those participating in cancer clinical trials have murkier guidance on vaccination. Allyson Harkey, 46, of Maryland, has stage four renal cancer and is participating in an immunotherapy trial; she said her doctor isn’t sure whether she should get the vaccine. The National Comprehensive Cancer Network’s guidelines broadly recommend patients receiving immunotherapy should get the vaccine as it becomes available, but should consult with their doctors beforehand since there’s such a variety of trials. She feels as if she is in a state of limbo, waiting for more information — a process made more frustrating by what she feels is a ticking clock. “My prognosis isn’t great. I probably have a few years left,” she said. “It’s really hard to spend this time, knowing I don’t have a lot of time left, just in my house.”

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