"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: http://tinyurl.com/PAFCCCAPedsSurvey 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 Trumpcare 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 a cruel, devastating legacy that will hang over them for decades.

  • 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 appalling 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.

Action Day is here! Join us from home.

Today, 200 childhood cancer advocates are storming the halls of Congress with the Alliance for Childhood Cancer Action Day! And there are hundreds more around the country taking part in a virtual day of action -- that's where you come in. 

There is so much going on in Washington right now with the potential to have a big impact on our kids, which is why the 6th Annual Childhood Cancer Action Days is so important.

Please join us in supporting these 200 advocates by backing up their message, wherever you are around the country. Follow along real-time as advocates share their photos and stories on social media, with the hashtags #CCAD2017 and #StepUp. Support their efforts with your re-tweets and shares!

We have three big 'asks' on the Hill today. Here's how you can amplify our efforts from home right now in these priority areas:

Childhood Cancer STAR Act:

RACE Act: 

NIH Funding:

  • Suggested tweet: The current survival rate for many childhood cancers is 0%. Congress, #StepUp with more funding for research at NCI! #CCAD2017
  • Write Congress.

Thank you for supporting our advocates in Washington and children with cancer around the country!

The Financial Toll of Childhood Cancer

The issue of "financial toxicity" as a side effect of a cancer diagnosis has been gaining much-needed attention in recent months (like this story in Stat that found 1/3 of patients have to borrow from family or friends, or this one in the Washington Post about cancer patients filing bankruptcy). But its impact on childhood cancer families still leaves much to be explored in order to find solutions to alleviate the heavy financial toll of a cancer diagnosis. We're taking on this issue, and we need you to be part of the conversation! 

We've got two upcoming opportunities for you to a) weigh in or b) learn more about the financial barriers that impact access to care and quality of life for families faced with a childhood cancer diagnosis and for survivors entering young adulthood.

WEIGH IN THROUGH OUR SURVEY -- In collaboration with the Patient Advocate Foundation, we launched a new survey this week of childhood cancer families, patients and survivors. 

Survey responses will provide invaluable insight into understanding many of the common problems and healthcare barriers patients encounter. This survey is intended to capture the experience and challenges of families like yours so that we can express those to decision-makers and the medical community.

The survey should take no longer than 10 minutes -- but we know your time is valuable:  In addition to helping us be a stronger voice for families in our community, eligible survey-takers will be entered in a weekly drawing to win a $100 Amazon gift card!

LAUNCH SURVEY HERE: http://tinyurl.com/PAFCCCAPedsSurvey

LEARN MORE IN AN UPCOMING WEBINAR: On Friday, April 28th, we'll be joined by academic researchers Anne Kirchhoff, PhD, MPH and Kira Bona, MD, MPH in a discussion about challenges and opportunities facing childhood cancer advocates in our efforts to decrease financial barriers and expand access to affordable cancer care for families with a child battling cancer.

Join us at 3pm Eastern as we start to explore what we as policy advocates can do to work toward effective solutions to lessen the financial burden on families in our community.

REGISTER: https://attendee.gotowebinar.com/register/477874523513904642

ON HIGH ALERT: Cancer Research Funding at Risk

White House Asks Congress to Slash NIH Funding for Remainder of FY2017 and Beyond

FY2017: A new White House proposal calls for $1.2 billion in cuts from the current fiscal year budget of the National Institutes of Health (NIH). Mid-year cuts on this scale would have a devastating and immediate impact on research grants across the nation with the potential to impact all disease areas, including childhood cancer. 

Current government spending will expire at the end of April, when Congress must pass a new spending bill for the reminder of the fiscal year (ending September 30, 2017). We're asking all advocates to contact their Members of Congress immediately and ask them to stand with us in defense of childhood cancer research at this critical moment. 

FY2018: This alarming news follows the White House release of a budget blueprint (PDF) earlier this month that proposes steep cuts to research agencies, eliminating $6 billion (20 percent) of the NIH budget. The National Cancer Institute's share of those cuts - an estimated $1 billion - would have a devastating impact on already-underfunded childhood cancer research.

More than 80 percent of NIH funds are awarded to researchers at institutions across the country - including to the Children's Oncology Group and doctors pioneering new treatments for kids battling cancer. With cuts of this size, their work could not continue and promising treatments would not be developed. 

It's important to emphasize that Congress - not the Executive Branch - controls the federal budget. But the President's blueprint traditionally presents the starting point for budget deliberations on Capitol Hill.

Cancer research has always had bipartisan support, and we are optimistic that we will be able to soften the blow of these cuts through the appropriations process -- but we will need all-hands-on-deck! Progress in childhood cancer research is almost entirely dependent on federal funding. Please speak up with us to advance new treatments and find cures. Take action here.

URGENT: Stand with us to defend children with cancer.

We know this is a bold statement but we aren't exaggerating: recent policy proposals out of Washington pose a very real threat to the lives of children with cancer. We need both advocates and donors to step up -- now more than ever before.

Decade upon decade, year upon year, the story of childhood cancer has been one of progress. By investing in medical research, scientists have discovered treatments and cures that previous generations could never have imagined. That progress has accelerated in recent years, spurred by a new era of precision medicine and genomic advances. But as science sits on the cusp of incredible new breakthroughs, we face this terrible possibility:  that we may, by political choice, take real steps backwards. 

Spiking our grave concern are two big policy proposals that you've surely heard of by now: the American Health Care Act and the President's budget blueprint.

Here's where we stand, and how you can help:

The American Health Care Act (AHCA) 

Our position: As a whole, the bill will shift health insurance costs to low and middle-income patients and families, significantly reduce the standards for quality insurance, curtail the Medicaid expansion and - over time - substantially reduce overall Medicaid funding. The AHCA would remove critical financial protections for families facing the crisis of a childhood cancer diagnosis, and that poses significant risks to the access, treatment, and care of children with cancer and survivors. Read our full statement to learn more.

Take action: If you share our concerns, we urge you to join us in reaching out to your Members of Congress about this bill. Write Congress here, and make a donation to help us speak louder on this issue.

President Trump's Budget Blueprint

Our position: The White House’s recently released budget includes deep cuts to research agencies, eliminating $6 billion (20 percent) of the National Institutes of Health (NIH) budget, and $1 billion in cuts to the National Cancer Institute. These cuts would have a devastating impact on childhood cancer research, which is almost entirely dependent on federal funding. 

Take action: Cancer research has always had bipartisan support. Please tell Congress we need them to stand up for the NCI and its life-saving medical research. Write Congress here, and make a donation to amplify our voice on Capitol Hill.

Like every battle for our children's lives, we won't back down without a fight. Can you chip in to strengthen our cause?

Please take action today with your words and with your dollars.

The American Health Care Act: What would it mean for children with cancer?

We've been closely analyzing the components of the recently released GOP healthcare plan, the American Health Care Act (AHCA), including speaking with experts and evaluating the input from the larger medical and patient advocate community. 

In any healthcare debate, the Children's Cause evaluates proposals through the lens of children and families. Our healthcare goals align with our core mission: to increase access to more effective therapies; to expand resources for childhood cancer research, and to address the needs and challenges of childhood cancer survivors. 

Our Statement on the AHCA:

The American Health Care Act (AHCA), as passed by two House Committees (as of 3.13.17), retains two critical childhood cancer protections -- prohibiting insurers from charging more based on health status and prohibiting pre-existing condition exclusions. However, the bill as a whole will shift health insurance costs to low and middle-income patients and families, significantly reduce the standards for quality insurance, curtail the Medicaid expansion and - over time - substantially reduce overall Medicaid funding.

Cancer is the leading disease-related cause of death for children aged 1- 19, with almost 15,000 children diagnosed each year.   By 2020, there will be at least 500,000 childhood cancer survivors in the U.S.  with serious long-term effects of their cancer diagnosis and treatment.  Significantly, some 30 percent of childhood cancer patients are covered by Medicaid at the time of diagnosis. 

The AHCA would change the income-based subsidy to a flat tax credit and impose late enrollment penalties for individuals who do not stay continuously covered. This is a significant issue for young pediatric cancer survivors.  It would also change the structure of the more flexible Medicaid program by converting federal Medicaid funding to a per capita allotment. It will freeze the enhanced federal match for Medicaid expansion currently used by many states, thereby making improvements for new treatment options potentially inaccessible.  

The AHCA would remove critical financial protections for families facing the crisis of a childhood cancer diagnosis. Cancer survivors who receive tax credits will also lose financial protections.   The AHCA proposal would alter current federal guarantees of Medicaid benefits and eligibility, threatening access to care for children with cancer. Maintaining current Medicaid coverage and adequately funding state programs are critical to providing children with cancer and childhood cancer survivors life saving and enhancing treatments.  The Children’s Cause believes the American Health Care Act poses significant risks to the access, treatment and care of children with cancer and survivors.

If you share our concerns, we urge you to join us in reaching out to your Members of Congress about this bill. Visit our healthcare action page to send a letter using our form template:

AHCA Statements & Perspectives from Twitter:

A Bill To Generate More Treatments for Childhood Cancer!

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 titled the Research to Accelerate Cures and Equity for Children (RACE) Act has just been introduced by Senators Bennet (D-CO) and Rubio (R-FL) and by Reps. McCaul (R-TX) and Speier (C-CA) that would eliminate those exemptions and improve opportunities for more studies in childhood cancer.  Furthermore, the legislation would determine whether childhood cancer studies are warranted based on the “method of action” or affected biomarkers, rather than the site of the cancer; which is now the basis of most cancer drug development.     

With a legislative opportunity coming up in the next year through a larger ‘must pass’ bill, the Children’s Cause is encouraging childhood cancer advocates to urge their senators and representatives to cosponsor this legislation. Click the button below to use our form and send a message to your Members of Congress asking for their support!