Author: Cannonball Kids' cancer

The Impact of COVID-19 on Pediatric Cancer Research- CKc Case Study

STATEMENT OF THE PROBLEM

The current COVID-19 pandemic has created a healthcare crisis that has stretched across the globe. While the full impact of this crisis is still unknown, nonprofits are tasked with responding to the immediate needs of those served by their missions. Furthermore, resources are dwindling; fundraising events must be canceled and donors, rightfully concerned with their own economic survival, may not be able to give at pre-pandemic levels. With fewer resources and greater need, nonprofits have a responsibility to assess their current efforts and plan a deliberate and targeted response to serving their missions, considering the impact of the COVID-19 pandemic. This paper details the steps taken by one organization, Cannonball Kids’ cancer Foundation (CKc) to assess the impact of the pandemic on pediatric cancer research and create a plan of action to effectively support the research funded by CKc.

METHODS AND ANALYSIS

From March 19 through April 3, 2020, CKc staff conducted video conferences with CKc-funded researchers (past or present), as well as the members of the organization’s Scientific Advisory Board. Their goal was to assess how the virus is impacting their hospitals, their work, and the children they serve, as well as to collect data to understand the magnitude of these challenges. In all, there were 14 researchers surveyed across the country and in the UK. This paper includes the information received from these participants, relayed in a confidential manner.

THE IMPACT OF COVID-19 ON PEDIATRIC CANCER RESEARCH

Though cancer does not stop for a global health emergency, research and clinical trials can. And, they are. Most research is considered experimental as opposed to essential, and it is evident that coronavirus is already hurting children with cancer. Moreover, the long-term effects could be significant.

THE IMMEDIATE CHANGES FOR CLINICIANS AND THEIR PATIENTS (CLINICAL TRIALS) INCLUDE:

• Avoiding exposure – 100% of clinicians interviewed are staggering their time in the clinic and hospital to protect their staff and avoid potential widespread exposure.

Clinical trial enrollment – Several have had to completely discontinue enrollment in Phase 1 and Phase 2 clinical trials, and more could end up doing so as things progress. All others are handling enrollment and treatment on clinical trials on a case-by-case basis, gauging risk versus benefit for each patient. Those who were planning to launch additional sites for their clinical trial in order to provide greater accessibility to patients are indefinitely delaying those openings.

Clinic visits – 100% are postponing non-emergency patient follow-up appointments, lab work, and scans.

Telemedicine – 100% have transitioned to utilizing telemedicine practices where possible. None were doing this regularly, and some weren’t doing it at all.

Travel – Travel is an ever-growing challenge for patients already enrolled in clinical trials. Many patients travel for treatment since early phase clinical trials are usually a last or only option, yet travel safety (particularly for immunocompromised patients), reliability, and permissibility are restricted. Additionally, lodging (particularly in-kind accommodation services) is limited or non-existent.

Staff transitions – In order to support the care of COVID-19 patients, some of the nursing staff has transitioned to those areas of care, and the physicians may also have to do so.

Hospital changes – Children’s hospital wards or floors are being converted into COVID-19 care or other types of care to help relieve patient load in other areas of the hospitals.

Blood shortages – Many pediatric cancer patients rely on blood or blood product transfusions, and the COVID-19 crisis has led to a shortage. In some cases, this has meant transfusing only a portion of what was truly needed in order to ration supplies.

Surgery – Surgeries are being deferred unless they are an emergency, and those that proceed do not include staff to collect tissue samples necessary for research studies.

Correlative studies – In cases where treatment continues, synergistic laboratory studies to infer additional data are on hold.

Emotional burden – In an already emotionally charged career, pediatric cancer researchers are having even more difficult conversations with parents as they communicate hospital changes and weigh the risk of missing treatment or visits against the possibility of exposure to the virus.


THE IMMEDIATE CHANGES FOR LABORATORIES (PRE-CLINICAL STUDIES) INCLUDE:

Halting progression – Nearly 100% have been forced to shut down experiments abruptly and close their labs (apart from a skeleton crew providing essential maintenance).

Termination efforts – They have frozen any samples and experiments that can be spared, stopped supply orders, and compromised many of their animal models.

Supply scarcities – Because the childhood cancer labs have ceased full operations, some are being cannibalized for supplies needed to protect from and treat COVID-19. Not only are these supplies still essential to current maintenance, but there will also be significant cost and supply-related problems once the labs are able to resume functionality. The demand for these supplies, and their scarcity, is likely to delay the commencement of pre-clinical research even longer once the crisis passes.

Lab conversions – Some labs are being physically taken over and converted to COVID-19 research or vaccine development.

Human capital – Institutions have established hiring freezes, preventing certain studies from progressing, and some fear layoffs. Many pediatric cancer research grants provide salary coverage; and, if grants are suspended or unavailable, researchers will also lose their salaries.


LONG-TERM IMPACTS OF COVID-19 ON PEDIATRIC CANCER RESEARCH

Data – The gaps and inconsistencies in patient and laboratory data can present a continuity or comprehensiveness problem. This is an industry that already faces small patient populations and now it will take more time to gain statistically significant results and prove treatments are effective.

New grants – Statistically significant data are essential to gain future grant funding to develop clinical trials. Gaps in data create gaps in funding.

Furthermore, as nonprofit donations lag, so will the availability of those grant opportunities.

New trials – Preclinical lab work that was nearly ready to shift to a clinical trial for patients will now be delayed, lose traction, or cease in priority. In turn, those treatments will take more time to be available to kids.

Forward momentum – Undoubtedly, the overall momentum toward treatments and cures is affected. This impact goes far beyond kids currently in treatment, including those that are yet to be diagnosed with cancer.


CKC’S RESPONSE TO THE COVID-19 CRISIS

• Keeping promises – CKc will maintain its funding commitments. CKc has taken drastic administrative actions (such as moving the physical office to a donated space, applying for available government funding, etc.) to secure the stability of funding to current grant recipients. Installments owed to researchers in 2020 will be honored.

• Providing flexibility – Researchers will have more leeway in current contractual terms, allowing them to use funds more liberally toward research efforts when it helps ensure forward momentum. Researchers will have the ability to adapt to the current landscape and do so without extraneous paperwork or administrative hurdles from CKc.

• Offering extensions – CKc will extend grant timeframes for patient accrual and milestones with an additional six months, where needed.

• Helping with access – CKc is offering additional support for patient accessibility to trials where applicable.

• Communication – CKc has an open line of communication with each researcher and requested they alert CKc staff to any significant changes or needs that arise. CKc is committed to providing support for new needs that arise, where applicable.

• Honoring donor intent – Donors that have already committed funds to CKc did so with the intent of creating innovative pediatric cancer research and educating for change. CKc will honor that intent by keeping these resources solely focused on pediatric cancer research.

• Focus on education – CKc is maintaining its goals regarding educating for change in all communities. Through education campaigns and telling the stories of pediatric cancer families via social media and education events, CKc has changed the perception of pediatric cancer. Showing the realities of pediatric cancer, both during cancer treatment and in survivorship, CKc’s efforts have impacted cancer research on a national scale by submitting report language on rare childhood cancers for the 2020 Appropriations Bill. Currently, CKc has submitted report language for the 2021 Appropriations Bill that includes guidance for a discussion of survivorship metrics on a national level.

CKC’S DIRECTION FOR DONOR SUPPORT

The community of supporters surrounding CKc has asked how, in this crisis climate, they can be of service to the mission. While their ability to take immediate action is limited, the needs are clear, and CKc has asked donors and supporters to:

• Stay home! – Children with cancer are part of the population that needs you to STAY HOME. Those in treatment are immuno-suppressed, and survivors have long-term side effects and weakened organs, making it more difficult to recover from COVID-19. Follow the guidelines of your local government and take only essential trips to the grocery store or pharmacy.

• Donate blood – Pediatric cancer patients need blood and platelets desperately in all phases of treatment and the pandemic has reduced the number of people able to give. If able, and you feel safe in doing so, make an appointment to donate blood. Your local community blood bank will have information on what they’re doing to take COVID-19 precautions and how to provide this important resource to those in desperate need.

• Create cards for children in treatment – Make cards for kids in treatment and keep them until it’s safe to send them to us for deployment through our Card Club.

• Stay informed – Continue engaging with CKc in whatever way you can! We need you right here with us. Once childhood cancer research is back up and running, CKc will need support to meet the needs of the research community. That cannot happen without each of our supporters.

• Keep us in your plans for giving – If possible, continue to financially support CKc. When the labs reopen, and trials resume, the financial need will be profound.

HOPE FOR THE FUTURE OF PEDIATRIC CANCER RESEARCH

“My fears are that research labs, particularly pediatric cancer research labs with their limited public funding and strong reliance on philanthropy, which in turn relies on a strong economy, might be critically wounded, with staff layoffs more certain than not, and some research programs forced to close.”

– CKc-funded researcher

CKc has built its reputation on showing the reality of pediatric cancer. The sad fact is that the COVID-19 pandemic will result in children with cancer dying because they will not have access to needed clinical trials. The challenges will not end with the pandemic. Progress in pediatric cancer research will likely be delayed at least six months to one year. Scarcity of lab supplies, experienced staff, and physical access to treatment are all barriers that will need to be overcome to relaunch desperately needed clinical and pre-clinical research.

However, the pediatric cancer community, made up of researchers, patients with cancer and their families, survivors, donors and volunteers, is a steadfast community. When faced with adversity, with odds stacked against them, this community fights. CKc is committed to standing with this community, in solidarity and tenacity. Together, we will create options for children again. Together, we remain thankful for the fight.

LOCAL NONPROFIT ADVANCES FEDERAL EFFORTS TO RESEARCH CHILDHOOD CANCER

FOR IMMEDIATE RELEASE
December 18, 2019
Contact: Karen Revels, Executive Director
Email: Karen.Revels@cannonballkidscancer.org
Website: www.cannonballkidscancer.org
Facebook: @cannonballingcancer

LOCAL NONPROFIT ADVANCES FEDERAL EFFORTS TO RESEARCH CHILDHOOD CANCER

ORLANDO, Fla. – Orlando-based nonprofit, Cannonball Kids’ cancer (CKc) Foundation, announced today that Report Language accompanying the FY 2020 Appropriations Bill – originally drafted by the organization in partnership with Representative Stephanie Murphy and Senator Marco Rubio – was formalized by Congress’s official passing of the bill.

The Report Language will help close a gap the foundation identified in the Recalcitrant Cancer Research Act, which directs federal spending toward research on the nation’s deadliest cancers (those with a five-year relative survival rate below 50%). The Act currently only addresses adult cancers, but by including the deadliest pediatric cancers in the report language individually, the Committee will compel the National Cancer Institute (NCI) to focus research funding on those cancers as well. The committee also urged the NCI to utilize available resources to aid in the discovery of better treatments and cures to improve overall childhood cancer survival rates and requested an update on the progress of pediatric cancer research in 2021.

“This is a big win in the fight against pediatric cancer,” said Executive Director, Karen Revels. “It is simply not acceptable that in 2019 some forms of pediatric cancer have a zero percent survival rate. We hope this is just the first of many efforts to be made to prioritize federal funding for pediatric cancer research. We are so grateful for this step in the right direction.”

Among the cancers addressed in the report language, high-risk neuroblastoma is the cancer diagnosis received by Cannon Wiggins, CKc’s namesake, in 2014. The other cancers prioritized in the report are: anaplastic astrocytoma, diffuse intrinsic pontine glioma (DIPG), glioblastoma, Juvenile myelomonocytic leukemia, recurrent osteosarcoma, rhabdomyosarcoma, and diffuse anaplastic Wilms tumors. As an example, there are zero long-term survivors of DIPG, and, at diagnosis, families are told their child has less than one year to live.

Pediatric cancer remains the number one killer by disease of children in the United States. Forty-three children are diagnosed with cancer and every day at least seven children will die from cancer or the side-effects of the existing treatments. As many as 95% of childhood cancer “survivors” are likely to experience at least one late effect of treatment, with a third suffering life-threatening and chronic side effects and another third

suffering moderate to severe health problems. Pediatric cancer treatments have gone largely without progressive developments for over 20 years; for some forms of childhood cancers, the survival rate is still 0%. CKc is transforming this landscape by funding innovative, first-of-its-kind research and educating the public on the realities of pediatric cancer, both the rate of survivorship for various cancers and the impact of pediatric cancer treatments on survivors.

About Cannonball Kids’ cancer Foundation:

Cannonball Kids’ cancer Foundation’s mission is to fund innovative and accessible research for children fighting cancer to provide better treatments and quality of life, and to educate for change. Their rigorous, relationship-based, invite-only grants process ensures that 92% of CKc-funded trials are first-of-their-kind in the US. To date, CKc has awarded $2.4 million funding 24 research grants creating 593 options for treatment for children in 25 states, DC, Canada, Scotland, and Switzerland.

[EDITOR’S NOTE: The “c” in cancer in the name Cannonball Kids’ cancer Foundation is intentionally lowercase to give the word “cancer” an inferior status.]

CANNONBALL KIDS' CANCER FOUNDATION,
POST OFFICE BOX 547797
ORLANDO, FL 32854
(321) 325-5392
INFO@CANNONBALLKIDSCANCER.ORG

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