Navigating Childhood Cancer During a Global Pandemic

As a policy-focused organization, the Children's Cancer Cause is investigating the needs and concerns of childhood cancer families and survivors during the COVID-19 crisis that could potentially be addressed through legislative or policy solutions. Your input and insight will help ensure that we are working toward impactful solutions to the most pressing problems in our community during this challenging time.

Throughout the pandemic, we’ve been doing our best to keep you informed of the latest public health recommendations and breaking news. We continue to share information and resources on social media (Facebook/Twitter) as it relates to the health and well-being of children in treatment and survivors of childhood cancer. We are committed to bringing you reliable, trusted information that you can count on during this challenging time.

On this page, we bring you advice from experts that is more specifically aimed at cancer patients. Below these resources, we also have policy updates from Congress and the FDA that are relevant to our community.

The Children’s Oncology Group released advice for childhood cancer survivors (PDF here) and for parents of children with cancer (PDF here). Parents are advised that in most cases, treatment for children continues as planned: “Do not stop chemotherapy without talking to your child’s treatment team first.” If your child develops a fever, “you should continue to follow the usual instructions for fever that you have received from your health care team.”

Survivors are advised by COG to take extra precautions regarding social distancing and good hygiene. For survivors who suspect they may have the coronavirus, COG emphasizes that any healthcare providers they may see for COVID-19 testing or care must be informed: that you are a cancer survivor; of any chronic health conditions; and if your cancer treatment places you at high risk for lung or heart problems (such as chest radiation or certain chemotherapies).

The Children’s Oncology Group strongly recommends that both children in treatment and cancer survivors receive the COVID-19 vaccine as soon as they are eligible for it.

For children in treatment who are age-eligible for the vaccine (5+), the timing may depend on treatment considerations so talk to your oncology team. COG notes that “a small number of people are allergic to one of the vaccine components. If your child has had a severe allergic reaction to polyethylene glycol (PEG) or to polysorbate, check with their health care provider to determine which formulation of the vaccine is best for your child.”

COVID-19 Risk Factors:

• Children with cancer who test positive for COVID-19 are at more risk for severe illness than children who do not have cancer. This study from August 2021 found that about 20 percent of pediatric cancer patients who tested positive for COVID-19 experienced a severe infection, compared to 1-6 percent of children in the general population. Children with cancer are more likely to require hospitalization than other children, and their cancer care is often disrupted by their COVID-19 infection. Learn more about this study and outcomes from St. Jude.

• Current information suggests that a cancer history alone does not increase the risk for developing COVID-19. But, according to the COG, risk may be elevated for those with lowered immunity to viral infections, such as: survivors with chronic graft versus-host disease; survivors taking certain medications like corticosteroids, immunosuppressants, or medications that prevent or treat graft or organ rejection; and those who are currently receiving chemotherapy or have been treated with chemo within the past 6 months.

• Bone marrow transplant recipients are at increased risk of severe infection and mortality if they develop COVID-19. COVID-19 survival is about 95-99 percent in the general population but drops to 68 percent among transplant recipients. This risk applies even to those whose transplants took place more than a year ago. Read the study.

• Survivors with chronic health conditions affecting the heart or lungs, such as pulmonary fibrosis or cardiomyopathy, may be at higher risk of complications from a COVID-19 infection, according to the COG. Furthermore, “it is also possible that survivors who received treatments that may damage the heart or lungs may be at increased risk for complications if they develop COVID-19 infection. These treatments include: Anthracycline chemotherapy (such as doxorubicin and daunorubicin); Bleomycin, busulfan, carmustine, or lomustine chemotherapy; or Radiation involving the heart or lungs, including total body irradiation (TBI) and radiation to the chest, axilla, abdomen, or spine.”

• Patients being treated for blood cancers are at higher risk of severe infection, according to this December 2020 study. It is important to note that 77 percent of the patients studied were over 40 years old and that older age was associated with poorer outcomes.

• Regardless of cancer history, certain health conditions may increase the risk of complications from the coronavirus. These include diabetes, heart disease, high blood pressure, lung disease, kidney or liver disease, and severe obesity.

Vaccination Offers the Best Protection:

For children in treatment who are age-eligible (5 years and up) and for childhood cancer survivors and families, receiving the COVID-19 vaccination offers the best possible protection against severe impacts of the virus.

See also: ‘We’re dealing with unprecedented challenges’: Pediatric cancer patient’s family advocates for COVID vaccines (MSN, September 9, 2021)

In January 2022, the Food and Drug Administration (FDA) expanded the emergency use authorization of the Pfizer COVID-19 vaccine to allow for a third dose for certain immunocompromised children between the ages of 5-11. Eligible children include our community of pediatric cancer patients and survivors: those who have "undergone solid organ transplantation, or who have been diagnosed with conditions that are considered to have an equivalent level of immunocompromise."

Immunocompromised children who have received their second vaccine at least 28 days ago are now eligible for this third shot, as the FDA has determined it is safe and effective at increasing their immune response. "This will now allow these children to receive the maximum potential benefit from vaccination," according to the FDA release.

Pediatric cancer patients and survivors should speak with their oncology or survivorship providers about whether a third shot is right for them.

The FDA also authorized booster doses for the 12-15 year old population, given the current surge in cases due to the omicron variant. The booster interval has been updated to allow all individuals ages 12 and up to receive their booster five months after completion of their primacy Pfizer vaccination series. As of January 2022, the new booster interval applies only to the Pfizer vaccine, but FDA is evaluating the other vaccines and will provide additional guidance as appropriate.

COVID-19 Likely Caused Delayed Cancer Diagnoses in Children:

September 2020 commentary published in Pediatric Blood & Cancer sheds light on a different aspect of COVID-19’s impact on childhood cancer: delayed diagnoses. This piece raises the unsettling but critical question about how many childhood cancer diagnoses have been missed this year, due to missed or delayed primary care appointments because of the pandemic.

The researchers discovered this alarming data to back up these concerns: “Comparing the March‐to‐May periods in 2019 versus 2020, there was a 56% decline in cases. Assessing a longer time period pre‐COVID to further validate the findings confirmed a 59% decline in new cases comparing September 2019 to February 2020 (ie, a 6‐month span pre‐COVID) to March‐May 2020.”

After states began to “reopen” in June, the researchers found a gradual recovery in new cases, but the researchers voiced fears about whether primary care doctors and pediatricians who are now dealing with a back-log of patient visits are able to allocate enough time per patient for the thorough evaluations required to detect potential diseases. There are obvious damaging implications for children who are diagnosed at a later stage in disease progression. 

“Well‐child care visits, at a minimum aligned with required vaccinations, should remain a priority both for primary care providers and families. The future trajectory of the COVID‐19 crisis remains uncertain, but the epidemiology of pediatric cancer diagnoses remains a certainty. While rare, these are diagnoses that cannot be missed. Existing literature regarding the mild COVID‐19 clinical course in children, with or without an oncologic diagnosis, coupled with the efficacy of PPE in preventing nosocomial spread should encourage families to seek care, and primary care providers to maintain standard practice hours particularly as we navigate an unpredictable future with the potential for a second wave of COVID‐19 cases. As pediatric oncology providers, we remain indebted to our primary care colleagues and the active vigilance they provide the community. We must stand united in the difficult decisions surrounding practice‐implementation we will undoubtedly face going forth.”

See also: COVID-19 Pandemic Brings Health Disparities to the Forefront (August 11, 2021)

More Advice from Oncology Experts:

• From the National Cancer Institute: “The best way to prevent illness is to avoid being exposed to the virus.”

• St. Jude’s Together online resource has several great resources on COVID-19 and childhood cancer, including an overview of risk factors for children with cancer and survivors, plus activities for kids.

• More on risk factors, from Fred Hutchinson Cancer Research Center: “Patients with hematologic [blood] malignancies we believe will have the biggest risk. Also, patients who are in active chemotherapy and bone marrow transplant patients. Those are the ones with the most profound immune deficits.” — Dr. Steve Pergam, a clinical and infectious disease researcher at Fred Hutch

Emotional Health:

In our survey of caregivers of children with cancer and childhood cancer survivors, a common thread is a sense of overwhelming anxiety, exacerbated by social isolation. Parents commonly referenced COVID-19 as a PTSD trigger.

• The Cancer Support Community has added weekend hours to their Helpline and are in the midst of adding additional counselors to the line.  All of their counselors are masters-level licensed mental health professionals.  Weekday hours are 9-9 and weekend hours are 9-5 – all Eastern time.  The number is 888-793-9355.

• The American Academy of Experts in Traumatic Stress have suggestions for helping children cope emotionally with coronavirus fears: Helping Children Cope

• The Center for Pediatric Traumatic Stress has a two-page PDF about helping children cope, including common symptoms of stress in children, coping strategies, and a section dedicated to children with existing health conditions.

• From a breast cancer survivor, here are some self-care tips to help cancer families cope during this stressful time.

• The American Childhood Cancer Organization has an interactive online ‘feelings’ tool for parents and children to use together.

A study published in Pediatric Blood & Cancer on August 31, 2021, examined the impact of the pandemic on adult survivors of childhood cancers. The study found that, compared to a sibling control group, more survivors reported concerns about getting sick, needing to go to the hospital, feeling socially isolated, and worries about worsening health. But surprisingly, survivors and siblings were equally concerned about exposure to COVID-19 and the potential for adverse outcomes from infection. The study authors wrote: “Although more survivors reported concerns over social exclusion impact from COVID-19 on employment compared to siblings, they did not report more general fears or worries during this pandemic. This is consistent with an earlier report that nearly one-third of long-term adult survivors of childhood cancer were not concerned about their future health.”

Educational Resources:

Many families are continuing to face educational disruptions during the 2021-2022 academic year. If you have ongoing questions about how to balance health and safety with their child’s academic needs, here are a few resources that may help:

• How Coronavirus and COVID-19 May Affect IEPs and 504s (St. Jude Together)

• Q&A on Providing Services to Children with Disabilities During the Coronavirus Disease 2019 Outbreak (Dept. of Education)

• COVID-19 Planning Considerations: Guidance for School Re-Entry (American Academy of Pediatrics)

• Return to School During COVID-19 (HealthyChildren.org)

Potential Impact on Clinical Trials and Drug Shortages:

The FDA’s Oncology Center of Excellence is addressing critical issues for patients with cancer and their health care providers during this time. Here’s what they want cancer patients to know:

• They are working to anticipate and prevent drug shortages: “FDA is proactively monitoring the supply chain, and OCE will work closely with [Center for Drug Evaluation and Research] to prevent or mitigate shortages of oncology drugs that are critical to the treatment of patients with cancer. Shortage notifications and updates may be reported to FDA at drugshortages@fda.hhs.gov.”

• Clinical trial modifications may be required. OCE helped develop the FDA Guidance on Conduct of Clinical Trials of Medical Products during the COVID-19 Pandemic, which “assists sponsors in assuring the safety of patients involved in clinical trials, keeping patients informed of changes that could impact them, maintaining compliance with good clinical practice, and minimizing risks to trial integrity.”

• Follow @FDAOncology for regular updates.

More from the Oncology Center of Excellence: A Message to Patients With Cancer and Health Care Providers About COVID-19

See also: NCI Funding during the COVID-19 Public Health Emergency, by NCI Director, Dr. Norman E. Sharpless

The March 2020 Coronavirus Stimulus Bill:

The stimulus package passed by Congress in March 2020 - the Coronavirus Aid, Relief, and Economic Security (CARES) Act (H.R.748) - included multiple provisions “that would expand requirements for drug makers to report product shortages, give FDA authority to require device makers report shortages and potential supply disruptions, and protect manufacturers of respiratory masks from lawsuits,” according to Inside Health Policy.

A note about our policy and advocacy work during this difficult time:

Here at Children’s Cancer Cause, our work carries on without interruption. We continue to push for legislative progress on issues related to healthcare and research, and we are actively developing new initiatives to benefit childhood cancer survivors. Our attention remains laser-focused on combating childhood cancer and on the new policy challenges that are arising for childhood cancer families and survivors as a result of this pandemic.

As face-to-face meetings on Capitol Hill remain challenging, we continue to count on our grassroots network around the country to help us reach lawmakers virtually. Our Legislative Action Center has a number of issues you can take action on from home.

Our thoughts are with every childhood cancer family facing added uncertainty and fear right now. Stay safe and stay healthy.