Childhood Cancer Survey of Patient Needs: Our Key Findings

The above word-cloud shows parents' open-ended responses to the question: "In the past 12 months, which specific costs would you say contributed the most to your overall out-of-pocket expenses for the child/survivor's treatment or care?" The bigger the word, the more often it appeared in the caregivers' responses.

The above word-cloud shows parents' open-ended responses to the question: "In the past 12 months, which specific costs would you say contributed the most to your overall out-of-pocket expenses for the child/survivor's treatment or care?" The bigger the word, the more often it appeared in the caregivers' responses.

We conducted a survey this spring with the goal of better understanding the financial hardships and insurance challenges facing childhood cancer families and survivors. We're learning a lot from the results, and we want to share some of the things that really stood out to us.

Thank you to everyone who participated in this joint initiative of the Children's Cause and the Patient Advocate Foundation. Your input makes us better advocates on Capitol Hill for families and survivors around the country. We heard from 343 respondents, with fairly even representation from parents/caregivers (42% of respondents) and teen/young adult survivors (45%). 

Let's dive in to some key findings:  


91% of children and survivors that we surveyed currently have health insurance -- which means approximately one in ten do not. Furthermore, even for those who are insured, there are some big coverage issues at play -- like one-third of parents reporting their child's treatment was denied by their health insurance carrier at some point in time.

As reported by parents, the top reasons given for denial of coverage include: care deemed "not medically necessary;" therapy was experimental (i.e. clinical trial); therapy or test not covered; and out-of-network physicians or facility. One parent elaborated: "We appealed successfully in each instance, but it took a great deal of effort and energy."


Among parent/caregiver respondents, 6 in 10 reported experiencing a financial hardship over the past 12 months due to the cost of their child's medical care. Of those who have experienced a recent hardship, over one-third categorize their hardship as "extremely severe, unable to manage."

Notably, 87% of parents surveyed reported difficulty maintaining a regular work schedule over the past year due to their child's treatment demands. Nearly half - 46% - reported that one or two family members stopped working to care for their in-treatment child over the past 12 months. (Of the parents we surveyed, 80% were employed full-time in the month before their child's diagnosis -- just 39% of those parents are currently employed full-time).

While approximately one-third of parents report being debt-free, 28% currently owe at least $10,000 towards healthcare costs related to their child's cancer treatment. Six percent of parents have at least $50,000 in outstanding medical debt.

Nearly half of the parents we surveyed reported spending more than 20 hours per week caring for their child's needs related specifically to their cancer treatment and care. Parents frequently encountered difficulty with balancing other family responsibilities, meeting transportation costs, and scheduling childcare for their other children. One parent added the heartbreaking comment: "Both of our cars were repossessed and we couldn't buy Christmas gifts for the kids."


"My appointments take place over 1500 miles from my front door. My parents and I fly to every checkup, quarterly or semiannually." - young adult survivor

Among survivor respondents, 40% reported difficulty maintaining a regular work schedule over the past year, with 16% taking unpaid time off for their treatment or survivorship care. One-in-five young adult survivors had to stop working or reduce their hours over the past 12 months to manage their care.


A 17-Page Summary (PDF) →

If you missed the opportunity to weigh in on this round, stay tuned:  we'll be conducting more of these surveys moving forward in order to keep growing our knowledge and our data.

A RACE to the finish!

This blog was originally published in February and updated on July 10, 2017.

TODAY is the day to reach out to your Members of Congress about the RACE for Children Act. This legislation is included in a larger FDA User Fee bill that is expected to be voted on Wednesday.

Here's why the RACE Act is so important: 

The small population of children with cancer provides little market incentive for the biopharmaceutical industry to develop new pediatric oncology drugs. Children with cancer are currently treated with drugs that were developed several decades ago for adults, and research documents that they can be very damaging to their physical and intellectual development. Childhood cancer remains the leading cause of disease-related death in our children, and new and better therapies are sorely needed for children battling cancer.

Responding to this problem, Congress passed the Best Pharmaceuticals for Children Act (BPCA) in 2002 and the Pediatric Research Equity Act (PREA) in 2003 which provide critically important information on the safe and effective use of medications in the pediatric population, advancing the health of children.  While BPCA and PREA have yielded important new safety and labeling information for other children’s diseases, the laws have had a very modest impact on childhood cancer.

The two laws act in tandem as both carrot and stick to encourage new drug development for childhood diseases. BPCA provides an incentive of six months of exclusivity – or patent extension – for drugs that are approved for use in children. PREA, the “stick” portion of the approach, requires pharmaceutical companies who are developing a drug for adult indications also test the drug in children. Two exceptions to this requirement constrain their impact for children with cancer.  First, pediatric studies of a drug can only be required in the same disease (“indication”) for which it is being studied in adults.  Since children do not develop lung, breast or prostate cancer, for example, drugs under development for adult cancers do not have to be tested in kids. 

A second exemption from the PREA requirement applies to any drug being developed for a “rare” disease. Rare diseases are defined in US law as those that are diagnosed in fewer than 200,000 people per year in the US.   Unfortunately, most cancers meet the definition of a rare disease.   These exceptions have resulted in PREA having virtually no effect in stimulating more treatments for childhood cancer. That may be about to change, however.  

Legislation based on the Research to Accelerate Cures and Equity for Children (RACE) Act was introduced this year by Senators Bennet (D-CO) and Rubio (R-FL) and by Reps. McCaul (R-TX) and Butterfield (D-NC) that would eliminate those exemptions and improve opportunities for more studies in childhood cancer.  Today, we ask you to please urge Members of Congress to pass the RACE Act as part of FDA user fee legislation currently under consideration. 

This legislation would:

- Require that companies developing cancer drugs do PREA studies of their drugs in children when the molecular target of their drug is relevant to a children's cancer; and

- End the exemption of PREA obligations for cancer drugs with orphan designations if the molecular target of their drug is relevant to a children's cancer. 

This legislation is now part of a larger ‘must pass’ bill Congress is voting on this week. The Children’s Cause asks childhood cancer advocates to urge their Senators and Representatives to support this long-awaited legislation. Click the button below to use our form and send a message to your Members of Congress asking for their support!

Healthcare's critical moment is NOW.

Your Senators need to hear from you over this Fourth of July Recess! Reach out and ask them to vote NO on the Better Care Reconciliation Act of 2017 (BCRA).

The Senate is expected to vote on healthcare legislation upon their return from a brief Congressional recess. Many provisions in the BCRA would harm care that children with cancer and survivors need.

We all need to oppose this bill.

At least one-third of children with cancer rely on Medicaid when they are diagnosed, and these cuts to Medicaid threaten the care they receive.

The Senate bill also allows states to limit benefits, remove pre-existing protections, allow for annual and lifetime caps, and jeopardize follow-up care for our kids. Cancer is a disease of a child's lifetime, and this bill will eliminate critical care.

We urge the Senate to carefully consider any proposals that will impact children with cancer and to work with stakeholder organizations on a bipartisan basis to ensure that children with cancer have access to meaningful and affordable health insurance for their treatment and survivorship care.

Please write your Senators using our action alert -- and then call their officesend them a tweet, and share share SHARE.

If you're willing to try to meet with your Senators in person while they're home next week, check out our Guide to Scheduling a District Meeting

Thank you for being an advocate for our kids.

CCCA's Founder Susan Weiner Receives ASCO Award

Children's Cause staff and Board of Directors offers enthusiastic congratulations to our founder and president Susan L. Weiner, PhD, for her recognition by the American Society of Clinical Oncology (ASCO) as the recipient of this year's Partners in Progress Award.

Photo: Susan at ASCO with Former ASCO President and Current CCCA Board Member Michael Link, MD

The Partners in Progress Award recognizes a person involved in patient advocacy activities that supports legislative efforts around research, treatment, prevention and care. Susan accepted the award and presented remarks on Monday at the ASCO Annual Meeting in Chicago.

In an interview with the ASCO Daily News Evening Edition, Susan was asked about the current state of childhood cancer care:

"Children continue to get superior, multidisciplinary care at most academic care centers, and now it's exciting that the genomic understanding of these diseases is beginning to fine-tune cancer therapies for children in these settings. Key problems remain, however, such as questions regarding reimbursement for what will be the skyrocketing cost of treating very small populations of children. Plus, families shoulder a tremendous and complex burden, as more care is delivered on an outpatient basis. Although it's always better for kids to be home than in the hospital, families require substantial support."

Asked about the most significant achievements in pediatric cancer advocacy since CCCA's founding in 1999, Susan said, "the community of childhood cancer groups is much more integrated and sophisticated than when we started the Children’s Cause. Now, coalitions are able to apply more pressure nationally and at the grassroots level."

We thank Susan for her visionary leadership within this organization and in the broader cancer community. We are honored to be a part of her mission to achieve a future where every child with cancer can live a long and healthy life.

Research Roundup: FDA Approvel of Keytruda a Landmark Moment for Precision Medicine

As May comes to a close, we bring you a round-up of some recent research news and developments related to childhood cancers:

THE BIG NEWS -- Keytruda Approved by FDA : In a groundbreaking research development this month, the Food and Drug Administration has approved the first ever cancer therapy based on a patients' specific genetic traits, rather than cancer type. This approval includes children with the identified genetic trait whose cancer has progressed and who have no alternative treatment options. This is a huge leap forward for the field of precision medicine, which uses a patient's genetic makeup to deliver immuno-targeted therapy. (Reuters, May 23  |  The American Journal of Pharmacy Benefits, May 16)

SPEAKING OF PRECISION MEDICINE: The Precision Medicine Institute at NIH has been renamed the All of Us Research Program. 

SECONDARY CANCER RISK FOR HODGKIN'S SURVIVORS: European researchers found that Hodgkin's Lymphoma survivors are at an elevated risk for secondary cancers, with a higher risk in survivors that have a family history of cancer. In particular, the study highlights an increased breast cancer risk for females treated for Hodgkin's at a young age and lung cancers for those with a family cancer history. (Cancer Knowledge Network blog by Dr. Greg Aune | Journal of Clinical Oncology, May 2017)

NEW SUB-TYPES OF MEDULLOBLASTOMA IDENTIFIED: The most common malignant pediatric brain tumor, medulloblastoma, has been sub-divided into seven distinct molecular sub-groups. Prior to this new research done by Newcastle and Northumbria Universities, there were just four identified sub-groups. These more precise characterizations will lead to more precise treatment regimens, hopefully leading to improved survival rates. (The Lancet Oncology, May 22)

MOUSE TRIALS SHOW PROMISE IN TREATING 5 DEADLY PEDIATRIC BRAIN TUMORS: A pre-clinical mouse trial study shows promise with a new immunotherapy treatment for Group 3 medulloblastoma, atypical teratoid rhabdoid tumors, PNET, glioblastoma, and DIPG. The immunotherapy targets a protein called CD47 and has the unique ability of bypassing the blood-brain barrier. Phase Two trials will examine the critical question of whether the therapy shows promise in humans. (Mental Floss | Science Translational Medicine, March 15)

These advances emphasize the critical importance of investing in childhood cancer research. More than 90% of children with cancer in the U.S. are treated at a Children's Oncology Group institution and COG relies on steady NIH funding to maintain and grow its clinical trial program. Through the collaborative research network of COG, childhood cancer has evolved from a virtually incurable disease 50 years ago to its overall 80 percent survival rate today. By working together under the umbrella of the COG, childhood cancer research and treatment has advanced at a much faster pace than would have been possible with institutions working alone.

We thank Congress for recently adding $2 billion for NIH to the remainder of the FY2017 budget, and we are optimistic that bipartisan support for cancer research will continue as Congress begins to deliberate over the FY2018 budget. The Trump Administration is calling for a $6 billion cut to the NIH (with $1 billion coming from NCI), but we are hopeful that lawmakers on both sides of the aisle will fight for more research dollars, not fewer.

You can write Congress here to ask for their continued support of life-saving research funding through the National Institutes of Health.

Trump's Budget Proposes Deep Cuts to Medicaid & CHIP

There's a three-legged stool supporting children's healthcare in this country, which is especially critical for children with complex medical needs -- like pediatric cancer. Those three legs are Medicaid, the Children's Health Insurance Program, and the Affordable Care Act. Thanks to those three pillars of protection, only 4.8% of children went uninsured in 2016 -- a new all-time coverage record. This should be considered a significant public health victory. Except... all three legs of that stool are currently at risk of collapsing.

President Trump's FY2018 budget request, as sent to Congress on Tuesday ("A New Foundation for American Greatness"), calls for massive cuts to medical research and health insurance for low-income children. There's an incredible amount on the chopping block that could potentially impact children with cancer.

Here's a sampling of what's at stake:

- A $1 billion cut to the National Cancer Institute budget, compared to this year's funding. The NIH would suffer cuts of almost $6 billion total.

On a related note: Brand new polling data from One Voice Against Cancer, a coalition we're proud to be a part of, shows overwhelming public support for federal funding of medical research (90%!).

- Funding for the Children's Health Insurance Program would be cut by at least 20 percent for FY2018 and FY2019, snowballing into $5.8 billion in cuts over the next ten years. CHIP currently ensures 5.6 million low-income children, whose families fall into a gap: they can't afford private coverage but earn too much to qualify for Medicaid. The Trump budget calls for states to shoulder a heavier burden of CHIP by eliminating an element of the Affordable Care Act that increased federal funding of the program.

- A $1.2 billion cut to the Centers for Disease Control and Prevention (CDC), including an $82 million cut to the center that works on vaccine-preventable diseases like influenza and measles, which is an area of particular concern for cancer-stricken children with weakened immune systems.

- $22 million in cuts to the Office of the National Coordinator for Health IT (ONC), which could impact precision medicine initiatives and implementation of the 21st Century Cures Act.

- $800 billion in cuts to Medicaid over the next decade, by assuming the American Health Care Act will pass with its provisions calling for a transition to block grants to states... like the one in Arizona that forced the state to stop accepting new children into their version of CHIP. We estimate that approximately 1/3 of the nation's children with cancer are covered by Medicaid. 

Read more: Trump's Budget Cuts Deeply Into Medicaid & Anti-Poverty Efforts by the New York Times, and Top Five Threats to Children and Families Posed by a Medicaid Block Grant by the Georgetown University Health Policy Institute

The threats to Medicaid and CHIP are particularly troubling. Together, Medicaid and CHIP cover nearly half of children age 6-and-under, including thousands of children with cancer. We know that a childhood cancer diagnosis can be financially devastating, resulting in 10-15% of families who were not poor at the time of diagnosis becoming poor during their child's treatment. These families need more help -- not less.

It's important to emphasize that Congress - not the Executive Branch - controls the federal budget. Reaction from many policymakers was swift on Tuesday, as #TrumpBudget soared to the top of the trending topics:

We're collecting and sharing healthcare testimonials from childhood cancer families, and we would love to hear from you -- especially if you have experience with coverage under CHIP, Medicaid or the ACA exchanges. Your stories make us much stronger advocates in Washington as we fight for quality, affordable healthcare for our nation's children.

Name *

"Let Me Grow Up!"

As the Senate deliberates over the American Health Care Act, we at the Children's Cause are asking families impacted by childhood cancer to make their voices heard loud and clear.

The impact of this bill, as passed by the House earlier this month, would be devastating for children with cancer and the nearly 500,000 survivors of childhood cancer. (See our blog post: What Does Trumpcare Mean for Children with Cancer?)

If you're with us in this battle, please consider doing at least one of these things today - right now - to help us defend healthcare for our children:

1.  #LetMeGrowUp: We've been informed of a great new social media campaign by the Tennessee Justice Center and we want to help it gain some traction! The Let Me Grow Up campaign is asking willing families to post a brief video of their child on social media asking their Senators to let them grow up strong and healthy.

You can make your video whatever you'd like but the sample script is very simple: 

Parent: "What do you want to tell Congress?"

Child: "My name is _____. I'm __ years old. I like to {favorite hobby} and I want to be ______ when I grow up. I have childhood cancer. Let me grow up!"

Videos - even very brief ones - have great success at going viral and gaining the attention of Congress. Please be sure to use the hashtag #LetMeGrowUp and make your post public so it can be shared widely. (Let us know in the comments that you posted so WE can share it, too!)

2. Another social media campaign that's been trending is #IamAPreexistingCondition. This works great with a snapshot of your child and a sentence about why quality, affordable healthcare coverage is critical for their survival. 

3.  Finally, Write your Senators directly using our form below. We've drafted the letter for you so you can just add your information and hit 'send,' or feel free to add in a paragraph about your child to personalize your letter.

Thank you for using your voice to help us defend and protect our nation's most vulnerable.

Childhood Cancer Families Shoulder Heavy Financial Burdens

"We are exceptionally good at making families impoverished during therapy." - Dr. Kira Bona

We recently held a webinar on the topic of treatment-related financial hardships facing families with a childhood cancer diagnosis. Today, we want to share the recording of that webinar with you (see end of this blog post) and highlight a few of the key things we learned from the illuminating hour with research experts Kira Bona (MD, MPH), Anne Kirchhoff (PhD, MPH), and Elyse Park (PhD).

A repeating theme of the webinar was the lack of research and information on financial hardship among families with a child in treatment and survivors' long-term medical cost burden, which is why we're taking on this issue of "financial toxicity" as a side effect of a cancer diagnosis.

As we explore viable policy solutions, we ask for your help: 

If you are a parent or caregiver of a child with cancer or a survivor yourself, we ask you to take ten minutes to participate in this survey we are conducting in partnership with the Patient Advocate Foundation: Your individual responses will be kept confidential. In return for your time, eligible survey recipients will be entered into a weekly drawing to win a $100 Amazon gift card -- just our way of saying 'thanks' for sharing your valuable insight and helping to make us better advocates for families like yours!

The facts: 

  • 1 in 5 children who receive a new diagnosis of childhood cancer are already living in poverty. 
  • 10-15% of US families studied were not poor at the time of diagnosis and became poor during treatment for their child's cancer.
  • 1 in 4 families report losing more than 40% of their annual household income as a result of treatment-related work disruption -- which doesn't even take into account out-of-pocket expenses like traveling to the hospital and extra childcare at home.
  • 1 in 3 families face other work disruptions like having to quit a job or change a job.
  • Financial hardship persists for families at least a year after therapy ends.

Dr. Bona helped us better understand the impact of these financial hardships -- which extend beyond the pocketbook and in fact can impact a child's survivorship outcome. For example, Dr. Bona presented a studied that found lower family income is associated with a higher risk of children missing doses of oral chemotherapy in leukemia treatment. 

"Children from high poverty areas were significantly more likely to experience early relapse -- which means having had a relapse of their leukemia less than 36 months from remission than children from low-poverty areas," said Dr. Bona. Children with early relapse of acute lymphoblastic leukemia are harder to treat with additional chemotherapy. 

Dr. Bona pointed to a lack of systematic collection of data about financial hardship in pediatric clinical trials. "We are gathering all sorts of biological data about their child's cancer and how that relates to outcomes but we have not to date been taking into account any of the social determinants of health, whether that's pre-existing poverty or how financial hardship during therapy might impact outcomes." 

Looking further down the road, Anna Kirchhoff and Elyse Park are researching the health insurance concerns and coverage of adult survivors of childhood cancer. 

Dr. Park and Dr. Kirchhoff found that childhood cancer survivors are more likely to be covered by Medicaid than their siblings, more likely to have a history of being denied health insurance because of their cancer treatment, and they spend a greater percent of their income on medical expenses. 

Dr. Kirchhoff walked us through the impact of survivors' high out-of-pocket medical expenses. Notably, she reported that over half of the adult survivors in their study skipped recommended medical care in the past year. Those who are uninsured are significantly more likely to skip care (such as filling prescriptions or getting a test done). 

These researchers emphasized that young adult survivors - especially uninsured survivors - lack needed familiarity with the Affordable Care Act and other available insurance protections. This point becomes especially important - the need for additional education and survivorship support/assistance - if changes to the current health care law take place. They hope to develop a phone-based survivor assistance program ("Health Insurance Navigation Program") as a next step, to help these survivors overcome barriers to receiving the insurance and care they need.

We thank all three of these terrific presenters for sharing their critically important research with us and for their dedication to this area of study. Please share your own insight by taking our survey

"These measures - poverty and financial hardship - cross all histologic sub-types and risk stratification. These are domains that are present for one in five of our families at time of diagnosis and more than that as they progress through therapy.

Which means if we're able to come up with interventions that in fact may help this, we have the opportunity to potentially make huge improvements both in quality of life and potentially in disease outcome for our children and families."

- Kira Bona

A note on the recording below: The first several minutes of this webinar did not get recorded. The recording picks up near the beginning of Dr. Kira Bona's presentation.

What Does the AHCA Mean for Children with Cancer?

Our Response to the House Passage of the

American Health Care Act

For the children who have gone through a traumatic and costly cancer journey, the health care bill passed by the House of Representatives yesterday creates added fear and anxiety.

  • Cancer treatment - at any age - constitutes a pre-existing condition, which will endure for the rest of a person's life. This legislation would mean that an insurance company can deny health care coverage for a family or survivor. An insurance company could also charge a family or a survivor any amount it chooses -- with the excuse that treatment and care costs more for a survivor than for someone without a cancer history.
  • Under this legislation, there would be no limit to how much healthcare would cost a child in their lifetime. Children with cancer and survivors experience short-term and lifelong health and psychosocial impacts from cancer and its treatment. If, for example, a child develops a second cancer, heart disease, or lung problems as a late effect of their treatment, an insurance company can charge an unlimited amount for their care.

Yesterday's bill passed with some nominal funding for "high risk pools" to cover costs for higher risk individuals. But high risk pools have been tried in the past -- and failed miserably because of waiting lists and limited funding available to cover the high costs of care. Under this legislation, childhood cancer survivors would be relegated to these pools, where - if they can even get in - insurance would cost substantially more and coverage would be substantially less.

  • Medicaid programs cover up to a third of childhood cancer patients. The cuts envisioned for the Medicaid program at the state level would put middle-income and poor families at substantial risk of going into debt to sustain their children's treatment and care or - worse - foregoing necessary treatment altogether.
  • By 2020, there will be 500,000 childhood cancer survivors in this country and more each year. They will require monitoring and medical care for decades. This House legislation targets them for increased personal cost and sacrifice for the rest of their lives.

As the Senate begins debate on a health reform bill, the Children's Cause is asking families and survivors to make their voices heard loud and clear. Tell your Senators that childhood cancer patients and survivors deserve assured access to affordable health coverage.

Please write your Senators using our action alert (now targeted specifically at the Senate) -- and then call their offices, send them tweets, and share share SHARE. To stay informed and engaged, join our frontline defense team, the Kids Action Network.

Thank you for being an advocate for our kids.

House Vote on AHCA Expected TODAY

Here's where we stand on the American Health Care Act and how you can reach out to your Representative today to speak up for children with cancer and survivors.

This morning, along with other members of the Cancer Leadership Council, we signed this statement in opposition to this bill. 

You may have heard about the Upton-Long amendment or the MacArthur amendment. The CLC statement breaks these proposed amendments down to explain how they would impact cancer patients and survivors. 

Here's the short of it:

"The American Health Care Act (AHCA), as revised to include the MacArthur amendment and the Upton-Long amendment, remains inadequate to meet the needs of cancer survivors. Instead of protecting people with pre-existing conditions and safeguarding their ability to purchase adequate and affordable health insurance coverage, the revised AHCA offers an inadequate patchwork of risk pools and financial assistance. If the AHCA is approved, cancer patients will be left with no assurance that they can obtain adequate health insurance and the care they need."

Please stand with us to defend affordable, accessible healthcare for children with cancer and childhood cancer survivors. We need all hands on deck today, and that includes YOU!

Please write your Representative using our action alert -- and then call their office, send them a tweet, and share share SHARE. 

Thank you for being an advocate for our kids.