The Leukemia & Lymphoma Society (LLS) hears from blood cancer patients and caregivers each day about the profound effects of the pandemic on their cancer care and daily lives, including questions about COVID-19 vaccination and when they will be available to them.
While it’s been an incredibly trying time, there is optimism ahead as the supply of vaccinations and rate of vaccination will continue to increase. As of February 28, 2021, three COVID-19 vaccines have been authorized by the U.S. Food & Drug Administration. While we may not have all the answers at this time, LLS Chief Medical Officer, Gwen Nichols, MD, is addressing a few FAQs from blood cancer patients and caregivers based on what we know right now. We encourage blood cancer patients and caregivers to discuss COVID-19 vaccination with their oncologist and healthcare team as early as possible so they can make an informed plan of action when a vaccine becomes available to them.
It’s also critical for blood cancer patients and their caregivers to continue taking precautions such as wearing a mask, maintaining social distancing, and washing your hands frequently. Data continues to show that blood cancer patients are at higher risk of developing more severe illness from COVID-19. This includes higher risk for severe infections and death, as well as being contagious longer.
We understand that you may be experiencing uncertainty about the impact of COVID-19 on your cancer care and may have many questions about if you should get a vaccine and when it will be available to you. As you continue to navigate your care during these challenging times, LLS offers a wide array of free education and support that can help. LLS Information Specialists – highly trained oncology professionals – are here to provide one-on-one support at (800) 955-4572 or by live chat/email here.
Last updated 3/3/2021
QUESTIONS ABOUT VACCINE AVAILABILITY AND ACCESS
What COVID-19 vaccines have been authorized or approved?
On Dec. 11, 2020, the FDA granted emergency use authorization (EUA) to a vaccine from Pfizer-BioNTech – the first COVID-19 vaccine authorized in the U.S. One week later, on Dec. 18, 2020 the FDA granted EUA to a vaccine from Moderna. Both vaccines were more than 90% effective in preventing illness from COVID-19 among clinical trial participants. Both are given in two doses 3- to 4-weeks apart. On Feb. 28, 2021, the FDA authorized a vaccine from Johnson & Johnson. This is given as a single dose. Public health experts like Dr. Anthony Fauci are encouraging everyone to take whichever vaccine is available to them because all are highly effective at preventing severe disease, hospitalization and death from COVID-19.
These vaccines mark an important step forward in the fight against COVID-19. Blood cancer patients are among those who are at increased risk of developing more severe illness from the virus that causes COVID-19. We encourage blood cancer patients and caregivers to discuss COVID-19 vaccination with their oncologist and healthcare team as early as possible so they can make an informed plan of action when a vaccine becomes available to them.
Who is eligible to get vaccinated?
The Pfizer-BioNTech vaccine is authorized for use in anyone 16 and older, while the Moderna vaccine Johnson & Johnson vaccines are authorized for people 18 and older. Since there are limited quantities of the vaccines currently available, the U.S. Centers for Disease Control and Prevention (CDC) is providing recommendations to federal, state, and local governments about who should get vaccinated first. The first group, Phase 1a includes healthcare personnel and residents of long-term care facilities. Phase 1b includes frontline essential workers and people 75 years of age and older. People aged 16-64 years with underlying medical conditions, such as blood cancers, are included in Phase1c. Check here for the latest information from the CDC.
How will COVID-19 vaccines be distributed, and how do I get one once available?
Vaccine distribution is following a phased approach, where the first people to receive them will be healthcare workers and residents of long-term care facilities. The CDC has put forth COVID-19 vaccination recommendations outlining these groups as priority. Ultimately, states have the final say over who is first in line for any COVID-19 vaccine, but they are generally expected to follow guidance from the CDC. For detailed information about how the vaccine roll-out is progressing in your state, The New York Times has developed a helpful tool that tracks vaccine eligibility by state.
It’s anticipated that vaccines will become more widely available to the general public in late spring or early summer 2021. Be sure to speak with your oncologist to discuss COVID-19 vaccination as early as possible so they can make an informed plan of action when a vaccine becomes available to you.
How can I get assistance signing up for my COVID-19 vaccination?
Once your doctor has recommended you receive the COVID-19 vaccine, it may still be difficult to find the vaccine available in your area. Vaccines to protect against COVID-19 are now available in limited quantities in the United States. You can check with your local Public Health Department for availability and distribution locations in your area and how to make an appointment.
The Centers for Disease Control (CDC) also has an online VaccineFinder “Where to go” resource. It will be updated once COVID-19 vaccination is widely available to the public to help direct people to find a vaccine provider near them. Please continue to check back for updates here.
How do I cope with pandemic fatigue while I wait for a vaccine?
If you’re experiencing feelings of anxiety, stress, fear, sadness, and grief, know that you are not alone. Months of isolation and uncertainty can take a toll on anyone, and LLS is hearing from many patients and caregivers who are going through it right now. Taking care of yourself is one of the most important things you can do, and support is available to you. LLS has so many free resources to help you find the support that is right for you, including online chats, our social network LLS Community, a peer-to-peer support program, and so much more. LLS Information Specialists are here to help you and any blood cancer patients, survivors, caregivers, family members, and healthcare professionals at (800) 955-4572 or by live chat/email here.
Will COVID-19 vaccines become an annual vaccine like the flu?
Studies are still ongoing about the durability of responses to the vaccines, so we don't have the answer yet. In the next six months or so, we’ll begin to see one-year data from those who started the early-phase studies to see how long their antibodies have lasted.
What is LLS doing to help blood cancer patients gain access to COVID-19 vaccines?
Connecting patients and caregivers with the vaccines requires the support and efforts of many workers in the healthcare system – from navigators to help them locate vaccination sites, to oncologists who advise patients on the proper course of action. LLS’s Office of Public Policy is doing its part by ensuring blood cancer patients’ interests are being heard by policymakers involved in the country’s vaccine rollout. A summary of our effort include the following:
Only a national, comprehensive approach can address the range of challenges that have impeded access to COVID-19 vaccines. LLS – along with other partner organizations – is closely monitoring the Biden administration’s rollout process. We’ll communicate to the administration the strategies we believe will improve access to the vaccine, and we’ll update that guidance as the situation evolves. We’re also in touch with policymakers in state government.
Advisory Committee on Immunization Practices (ACIP)
Under ACIP’s guidelines, cancer patients are high-priority for vaccination, falling under the “Phase 1c” designation. States are encouraged, but not required, to follow ACIP’s recommendations. Back in January, we shared our views with ACIP. We applauded the committee for the high-priority designation it gave blood cancer patients. But we also reminded its members just how important it is for them to follow emerging data specific to the risk of COVID-19 to blood cancer patients. In addition, we urged ACIP to advise states on streamlining vaccine registration processes and keeping those processes from being overly burdensome for patients.
When will a vaccine be available for children? What about children with cancer?
Because children’s immune systems are different from those of adults, pediatric clinical trials are essential to establish safety and efficacy of COVID-19 vaccines among children. As some pediatric trials are just getting started, it will be some time before we see a vaccine available for kids – likely later into 2021. While we don’t know when trials will begin that include children with cancer, it’s a good idea to begin discussing vaccination plans with your child’s oncologist. LLS continues to monitor for developments closely. We are keeping abreast of the ongoing studies, and advocating for the inclusion of cancer patients and survivors in clinical trials when it is safe to do so.
QUESTIONS ABOUT VACCINE EFFICACY AND SAFETY
Will COVID-19 vaccines be safe for blood cancer patients? Should I get one right away?
All three vaccines were shown to be safe in clinical trials and more than 75 million Americans have received at least one vaccine dose so far. At this time, patients undergoing cancer treatment may be offered vaccination against COVID-19 if they have no other contraindications to these vaccines. Data keeps coming in about how dangerous the virus is for cancer patients—particularly those with blood cancer, so vaccination will be very important.
There is no reason to believe COVID vaccines will be any less safe in patients with blood cancer. However, COVID-19 vaccine clinical trials have not included many cancer patients. Cancer treatment can affect how well a patient’s immune system responds to vaccines. While some immunocompromised patients may experience decreased immune response to the vaccine, it may still confer some benefit and is important for reducing the risk or severity of COVID-19 to cancer patients. LLS encourages blood cancer patients to discuss COVID-19 vaccines with your oncologist and healthcare team.
Even after vaccination, cancer patients should continue to follow current guidance including wearing masks, social distancing and frequent hand washing to protect themselves from exposure to COVID-19.
Have blood cancer patients been included in clinical trials studying the safety and effectiveness of COVID-19 vaccines?
Cancer patients were generally not included in many of the COVID-19 vaccine clinical trials. While there is no reason to believe vaccine safety will be different in cancer patients, important questions remain about how well these vaccines induce immunity in patients with cancer, particularly those undergoing treatment. Specifically, some cancer patients may not be able to develop a full immune response due to their cancer or cancer treatment so they may still contract the virus and spread it to others. That’s why it’s important for cancer patients to continue to take other preventative measures like hand washing, wearing masks and social distancing.
I have experienced severe allergic reactions to prior vaccines or injectable drugs. Can I still get the COVID-19 vaccine?
Currently, CDC considers a history of severe allergic reaction, such as anaphylaxis, to any vaccine or to any injectable therapy (e.g., intramuscular, intravenous, or subcutaneous) as a precaution, but not contraindication, to vaccination. However, severe allergic to any specific component of the Pfizer-BioNTech, Moderna or Johnson & Johnson COVID-19 vaccines is a contraindication to vaccination.
LLS strongly encourages you to discuss any questions or concerns about the potential risks of vaccination with your healthcare provider.
How do these new vaccines work?
All vaccines have the same goal: to get the body to develop protective antibodies against a disease without us having to get sick. The Pfizer and Moderna vaccines both use a technology called messenger RNA (mRNA). mRNA vaccines use a snippet of the virus’s genetic code to instruct cells in the body to build viral proteins. In this case, the cells learn how to make the so-called “spike protein” found on the surface of the COVID-19 virus. This is the first time this technology has been used for a vaccine. The Johnson & Johnson vaccines is used a technology that comes out of decades of research and the company has used in other approved and investigational vaccines.
All three vaccines trigger an immune response, which produces antibodies, helping the body recognize and fight infection if exposed to the actual virus. The lightning speed at which the science is progressing is truly remarkable.
QUESTIONS ABOUT COVID-19 AND ITS IMPACT ON BLOOD CANCER PATIENTS
Does COVID-19 produce different symptoms in cancer patients than in other people?
Overall, the symptoms of COVID-19 are the same in cancer patients as the general population. One exception might be patients who are taking steroids or other medications to treat leukemia or lymphoma. These treatments can suppress the development of fevers. As a result, patients with COVID-19 who are taking these types of medications may not register a fever — or as high a fever — as others with the infection.
How do I stay up to date on the latest developments about COVID-19?
Check this page often for the latest updates from LLS. You can also get answers to more frequently asked questions or learn more by visiting the pages of the Centers for Disease Control and Prevention (here) and by contacting your local Public Health Department. Additionally, The American Society of Hematology (ASH) has developed a series of frequently asked questions that are categorized by malignancy topic for patients with leukemia, lymphoma, multiple myeloma and myelodysplastic syndromes.
As you continue to navigate your care during these challenging times, LLS offers a wide array of free education and support that can help. LLS Information Specialists – highly trained oncology professionals – are here to provide one-on-one support at (800) 955-4572 or by live chat/email.
Does health insurance cover COVID-19 testing and care?
You may or may not have out-of-pocket costs if you get tested for COVID-19 or if you need medicines or other care to treat it. You’ll need to check with your health insurance company about coverage. Here are some tips and resources to get you started:
- Call the toll-free number on the back of your insurance card
- Read about Medicare coverage of coronavirus-related needs
- See Medicaid’s frequently asked questions about COVID-19
- Learn about coronavirus and your Marketplace health plan coverage
I’m seeing several studies about how COVID-19 affects blood cancer patients. What are some of the key updates and takeaways?
Every day, the medical and scientific communities are learning more about how COVID-19 impacts blood cancer patients. In fact, the 62nd American Society of Hematology Annual Meeting in December dedicated a number of sessions to this topic.
Some of the key takeaways include:
- It’s essential for blood cancer patients and caregivers to continue following appropriate precautions to minimize exposure risk. More studies confirm that blood cancer patients, particularly those in active treatment, are at an increased risk of severe disease and death from COVID-19. What’s more, a patient’s ability to make protective antibodies to COVID-19 may be impacted by active treatment with lymphodepleting chemotherapy (including therapies that are not traditional chemotherapies).
- Guidelines for COVID-19 isolation precautions may need to be revisited for immunocompromised patients. The length of viral shedding (how long you may remain infectious to others) in some cancer patients may be longer than other COVID-19 patients and this may require longer quarantine measures.
- Stay in touch with your healthcare provider about COVID-19 symptoms. One study showed there may be a higher level of false negative COVID-19 testing by nasal swab among blood cancer patients, particularly those who are in active treatment. A false negative means that the test says the patient doesn’t have the virus when in fact they do. Because this study involved a small number of patients, more research is needed. The best advice right now is to talk with your healthcare provider if you have any symptoms that suggest COVID-19 infection, even if you have tested negative. Your provider can advise whether repeat testing or more sensitive testing should be considered.
- It’s essential to increase scientific knowledge about how COVID-19 and COVID-19 vaccines affect cancer patients. The LLS National Patient Registry provides a unique opportunity for blood cancer patients to join LLS to increase scientific knowledge about how COVID-19 and COVID-19 vaccines affect them. Go to www.lls.org/registry to learn more.
QUESTIONS ABOUT COVID-19 & VACCINATION WHILE UNDERGOING BLOOD CANCER TREATMENT
I am a newly diagnosed blood cancer patient – should I get vaccinated for COVID-19 before treatment?
Since the situation for every person is different, we recommend discussing the risks and benefits of getting the COVID-19 vaccine with your oncologist. Generally speaking, it is best to vaccinate before treatment as the immune response to the vaccine may be impaired in patients receiving chemotherapy.
I am a blood cancer patient undergoing active chemotherapy. Am I more prone to COVID-19 infection?
A recent study presented at the American Association for Cancer Research (AACR) COVID-19 and Cancer meeting showed no increased risk of getting COVID-19 among cancer patients on active chemotherapy treatment. With proper precautions in the clinical setting, disruptions in lifesaving cancer treatment should be minimized during the COVID-19 pandemic. We encourage you to discuss any questions regarding your cancer care with your oncologist and healthcare team.
I am a cancer patient who has received lymphocyte-depleting therapy (i.e. rituximab, blinatumomab, anti-thymocyte globulin, alemtuzumab, etc.). When should I get vaccinated?
According to COVID-19 vaccine interim guidelines from Memorial Sloan Kettering Cancer Center, for patients who have received lymphocyte-depleting therapy, it is reasonable to consider deferring vaccination until six months after completion of therapy or until there is evidence of lymphocyte reconstitution. We encourage you to discuss specific questions or concerns with your medical team as every patient’s experience is unique.
I am a lymphoma patient on rituximab (Rituxan) or obinutuzumab (Gazyva). Will the COVID-19 vaccine still be effective for me?
According to data presented at the American Association for Cancer Research (AACR) COVID-19 and Cancer meeting, CD-20 targeting agents such as rituximab and obinutuzumab were tied to severe COVID-19 in lymphoma patients. Patients with lymphoma may develop immune deficiency due to particular features of their disease or due to their treatment regimen, which can lead to increased incidence and increased severity of infections.
Certain lymphoma therapies, particularly rituximab and obinutuzumab may diminish the immune response to vaccines due to their effects on normal B cells. This observation has been noted in some patients with other vaccines.
However, since not many cancer patients were included in clinical trials of COVID-19 vaccines, we do not presently know if or how much treatment with rituximab or obinutuzumab would affect the efficacy of a vaccine.
I am a CLL patient who has tested positive for COVID-19. Should I continue treatment with BTK inhibitors (BTKis) including ibrutinib and acalabrutinib?
Recently published reports suggest a possible benefit from BTKis (ibrutinib and acalabrutinib) in people with severe COVID-19 infection. While controlled studies are needed to confirm those results, ASH’s current recommendation is to continue BTKis in patients with CLL diagnosed with COVID-19.
Should COVID-19 vaccines be administered to autologous HCT, allogeneic HCT, and CAR T cell recipients?
HCT or CAR T cell recipients are often immunosuppressed for months following treatment due to maintenance therapies and immunosuppressive drugs, among other factors. Based on current evidence, the available vaccines could be offered as early as three months following HCT or CAR T cell therapies, although efficacy may be reduced compared to results in general populations.
If you are a HCT or CAR T cell patient, please discuss any questions regarding vaccination with your oncologist and healthcare team.