Recognizing Parents of Children with Cancer for National Family Caregivers Month

In recognition of November as National Family Caregivers Month, we bring you some resources for advocates and tips for caregivers of children with cancer.

The Caregiver Action Network set this year's theme as Caregiving Around the Clock, in recognition that a caregiver's job never ends. The vast majority of family caregivers in this country are taking care of aging parents, but we want to shine a spotlight on parents who are taking care of their critically ill children, including children with cancer. 


Parents of children with cancer are all-too-familiar with the stresses of administering their child's medication, juggling work responsibilities, panicked middle-of-the-night ER visits, losing time with other children and family members during lengthy hospital visits, and everything else involved with the 24/7 management of a sick child's care.

In our own research, we found that 87% of parents we surveyed earlier this year 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. 

Action Steps for Caregiver Month:

If you're an active parent caregiver:  Many parent caregivers report that their own self-care takes a big hit while their child is in treatment, but it's important to remember that your child needs you to be physically, emotionally and mentally healthy in order to be the best caregiver, advocate and (most importantly!) parent that you can be. Here are a few self-care tips for parent caregivers: 

- Many children's hospitals offer support groups for parents of children in treatment. Ask what's available! If you're not interested in a support group, consider yoga, an art class, or even just a regular coffee date with a friend.

- Ask for - and accept - help from friends and family. Don't feel guilty about asking someone to stay with your child at the hospital for a day while you escape for a bit of 'me-time.' Remember that taking care of your mental health is another way of taking care of your child. 

- Get check-ups yourself -- and tell your doctor(s) about your caregiving role, so they understand some of the unique stresses you're under.

If you're an advocate: President Trump issued a formal proclamation recognizing the month and the devotion of caregivers. The Caregiver Action Network has provided this sample proclamation for states and local governments, and there's still time in the month to reach out to your elected representatives.

Finally, consider sharing your story as a caregiver to a child with cancer. Being a parent to a child with cancer can be such an isolating experience. What's the best piece of advice you have to offer to another parent caring for their child during treatment? Please share below!

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CCCA Presents Rosen Research Award to Harvard’s Dr. Kesselheim


The Children’s Cause for Cancer Advocacy is presenting the Leonard M. Rosen Memorial Research Award to Aaron Kesselheim, MD, JD, MPH, tonight in New York City. Dr. Kesselheim is Director of the Program On Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women’s Hospital, and Associate Professor of Medicine at Harvard Medical School.

“Prescription drugs can be life-changing treatments for children with cancer, and so we need to make sure that there is adequate support for their discovery and development, that they are rigorously tested in the appropriate populations, and that they are accessible to the patients who need them,” Kesselheim stated in advance of the Thursday night event.  “My research in pharmaceutical policy—done in close collaboration with my colleagues at PORTAL and the Division of Pharmacoepidemiology—touches on all of these subjects, and it’s an honor to be recognized by a group like Children’s Cause that is dedicated to supporting these goals.”

The Award honors CCCA chairman and founding member Leonard Rosen and his many years of service on the board of directors. Leonard was the proud grandfather of a child treated successfully for rhabdomyosarcoma. He was a brilliant and astute advocate, who worked to advance research and regulations that could improve the effectiveness of childhood cancer therapies. 

In tribute to his legacy, the Award is granted annually to an individual who has made an outstanding contribution to childhood cancer policy and advocacy, recognizing the importance and unique challenges associated with the care and treatment of children with cancer.

Aaron Kesselheim, MD, JD, MPH

Aaron Kesselheim, MD, JD, MPH

Dr. Kesselheim was selected for the second annual presentation of this award in recognition of his critical research advancing treatments and access for children battling cancer. His work in the legal and regulatory fields of drug development and approval, as well as insurance coverage and reimbursement practices, informs and supports the policy efforts of Children’s Cause and childhood cancer advocates.

“It’s a privilege to present this year’s award to someone with as distinguished and accomplished a career as Dr. Kesselheim,” said George Dahlman, CEO of Children’s Cause. “Dr. Kesselheim’s dedication to accelerating innovative therapies honors Leonard Rosen’s memory and aligns with our mission of achieving access to less toxic therapies for the nearly 16,000 kids diagnosed with cancer every year.”

Dr. Kesselheim is also a faculty member in the Harvard Medical School Center for Bioethics and an Irving S. Ribicoff Visiting Associate Professor of Law at Yale Law School. 

To make a donation in support of our annual New York event, please visit here.

CHIP Renewal Delayed by Congress

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The current Children’s Health Insurance Program (CHIP) is set to expire on October 1st -- a deadline that Congress almost certainly is going to miss. If the program isn't renewed, millions of vulnerable children would face a loss of critical health insurance coverage.

While most states could manage to keep CHIP running briefly past the October 1st expiration of federal funding, at least ten states will run out of funding by the end of the year and most other states' funds will be exhausted by March 2018. Advocates also stress that there will be disruptions to the program before states exhaust their funding, and some states are beginning to issue warning notices to families. Minnesota's state health department sent an urgent letter to its Congressional delegation warning that its funds are depleted and it will have to take "extraordinary measures" to keep kids covered.

The House Energy and Commerce Committee announced today that it will markup legislation to reauthorize CHIP on October 4th -- days after the program is set to expire.

Nine million American children are covered by CHIP. Approximately one-third of children with cancer depend on either Medicaid or CHIP for their treatment.  

As advocates for children with cancer, we're asking Congress to pass a clean, five-year CHIP renewal without any extraneous, complicating attachments -- without further delay. Please join us by taking action:

Childhood Cancer Awareness Month: Highlights from Washington, DC

September is Childhood Cancer Awareness Month, a time when we celebrate advances in childhood cancer treatment and care, remember the children we've lost, and engage new advocates to join in our mission of achieving a day when every child with cancer can live a long and healthy life. Last week was a busy one in DC, jam-packed full of awareness events. If you weren't able to join us, we bring you these highlights:

  • The debut of our new Advocacy Toolkit, a guidebook full of the tools you need to become an informed, effective advocate for kids with cancer and childhood cancer survivors. Download your complimentary copy here.
Above: CCCA's Advocacy Toolkit, pictured here at the Children's Cause booth at CureFest, September 2017

Above: CCCA's Advocacy Toolkit, pictured here at the Children's Cause booth at CureFest, September 2017

  • We kicked off a busy week of activities with a fundraising event at Takoda Restaurant, bringing together friends old and new for a fun social evening at a great spot in DC on September 12th. We're grateful to everyone who showed up and bid on the terrific silent auction items available. We're especially thankful to the event sponsors, and we give special thanks to these Silver Level Sponsors: The Association for Accessible Medicines, Biotechnology Innovation Organization (BIO), Lilly Oncology, Pfizer, Russell and (CCCA Board Chair) Lori Ring, and our founder Susan L. Weiner, PhD.
Above: Friends and supporters at the Children's Cause social event in DC, September 2017.

Above: Friends and supporters at the Children's Cause social event in DC, September 2017.

It was an inspiring morning on Capitol Hill, and we thank the Caucus co-chairs - Reps. Michael McCaul, Jackie Speier, G.K. Butterfield, and Mike Kelly - for speaking up on behalf of our kids and for their continued legislative support.

  • The following day, AtlanticLive! hosted a well-attended forum on childhood cancer at the Newseum. Along with substantive panel discussions on immunotherapy and big data, we also had the pleasure of hearing perspectives from several childhood cancer survivors, including eight-year-old Caroline:
  • The highlight of the week - and month! - for many childhood cancer families was CureFest on the National Mall. Children's Cause was proud to be a sponsor of this year's CureFest, which brought over 80 foundations and hundreds of families together in the nation's capitol for two days of speeches, marches, rallies, walks, and entertainment. We made many new connections with families impacted by childhood cancer and thoroughly enjoyed the diverse line-up of entertainment.

Thanks to everyone who stopped by our CureFest booth. We hope to see you again next year!


Aside from CureFest, other notable coalition events from last week included the Rally for Medical Research Hill Day, an Alliance for Childhood Cancer Luncheon and Art Exhibit on Capitol Hill, and a Coalition for Childhood Cancer (CAC2) networking reception. We thank our coalition partners for their hard work to bring a real sense of community collaboration to awareness month.

These are just a fraction of the events that have taken place in the Capitol and around the country so far this month. We'd be remiss not to mention that Hyundai Hope on Wheels held its own set of events last week, as they do every September.

There are still a few days left in Childhood Cancer Awareness Month! Next up on the events schedule is a Capitol Hill briefing on Monday, September 25th, co-presented by Children's Cause and the American Cancer Society Cancer Action Network. The topic is access issues for childhood cancer patients and survivors. Learn more here.

Of course, childhood cancer doesn't end when September does. To support our year-round advocacy work on behalf of kids and families, please consider making a donation toward our September campaign before the month is out! Help us continue to be the voice of children with cancer.

Children's Cause Launches Childhood Cancer Advocacy Toolkit

Free download of grassroots guidebook available now at

To mark Childhood Cancer Awareness Month, Children's Cause for Cancer Advocacy (CCCA) announces the launch of a brand-new advocacy toolkit for families impacted by childhood cancer and those who want to make a difference on their behalf.

The CCCA Advocacy Toolkit is a guide to grassroots advocacy, arming both new and experienced advocates with tools and resources needed to contact and impact Members of Congress about policy issues relating to childhood cancer. 

Progress in the fight against childhood cancer is made possible when families and friends impacted by a childhood cancer diagnosis share their stories with policymakers who have the power to create real change. We created this toolkit to empower anyone to become an informed, effective advocate for kids with cancer and childhood cancer survivors – whether this is your very first time reaching out to Congress or your hundredth.

This free 50-page PDF is available for immediate download at We hope this tool will bring new advocates into the fold, to expand our growing community's collective voice. You can help by sharing the download link with your friends and family.

  • For beginner advocates: The guidebook will walk you through childhood cancer facts and policy priorities, messaging strategy, relationship-building tools, and practical step-by-step instructions for contacting and meeting with Members of Congress.
  • For experienced advocates: You will learn tactics for building and growing a coalition, and giving impactful testimony at a legislative hearing. The toolkit also covers effective advocacy through the media, including social media tips and sample letters to the editor. This guidebook is part of CCCA's ongoing effort to equip and mobilize a Kids Action Network, consisting of organized teams of grassroots advocates around the country dedicated to elevating the cause of childhood cancer.

If you're attending CureFest this weekend, be sure to stop by our exhibit booth! We'll have paper copies of the guidebook available.

Not in DC? Be sure you're following us on Facebook and Twitter, where we're bringing you live updates from the many events taking place this week in Washington.

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September Preview: Childhood Cancer Awareness Month

It's here! Childhood Cancer Awareness Month is upon us once again, and we want to share just a few of the MANY events going on in September.

The events listed here are ones we will be attending (read: they're in DC!) and that we know are open to the public. There are plenty more events happening during September, both in DC and around the country, and we encourage you to check out the CAC2 Events Calendar to see if there's something going on in your area!

First up, our own event:

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Advocates, young professionals, and young adult survivors are invited to join us in Washington, DC on Tuesday, September 12th for a social event at TAKODA Restaurant, from 6-8pm.

Tickets are still available but quantities are limited so order yours today! There is a discount rate for young professionals age 35 and younger, and we are offering complimentary tickets to young adult survivors of childhood cancer. Buy your tickets here, or email to inquire about a complimentary survivor ticket.

If your organization or company may be interested in sponsoring this event, please see our Sponsorship Benefits (PDF).

Learn more on our event page.


  • Congressional Summit & Alliance Art Exhibit on September 14th: Immediately following the 8th annual Congressional Childhood Cancer Summit is the Alliance for Childhood Cancer Art Exhibit and Luncheon on Capitol Hill. The Alliance is seeking art submissions from children with cancer, survivors or siblings to feature at this event. The submission deadline is September 8th!
  • Rally for Medical Research National Day of Action on September 14th: For those unable to make it to DC this September, Rally for Medical Research organizers have made it simple to participate in their day of action from anywhere. Learn more.
  • Atlantic Forum on September 15th: We'll be in attendance at this "Children and Cancer" forum at the Newseum the morning of Friday, Sept. 15th. Register here.
  • CureFest on September 16th & 17th: Be sure to stop by the Children's Cause exhibit table if you'll be attending this year's CureFest on the National Mall!

Follow along on Facebook, Twitter and Instagram as we share live updates from these events and others throughout the month, plus critical advocacy opportunities and breaking news. Please generously press the "share" button on social media this month -- YOU bring the "awareness" to Awareness Month!

10 Years of Hope: One Staffer's Reflection

Authored by Jessica Kean

2016, with my family at our home in Iowa

2016, with my family at our home in Iowa

As the Communications Director at the Children’s Cause, I write most of the blog posts you’ll see here, speaking on behalf of the organization and with the aid of the rest of our team. But today’s blog is a little bit different. I’m stepping out from behind the curtain to share a personal perspective, because this weekend marked a special milestone for me.

Ten years ago marked my first day on the job with the Children's Cause for Cancer Advocacy.

I never would have guessed in August 2007 that I’d still be working here a full decade later. It was my first “real” job out of college. I had no interest in staying in DC long-term. I had no connection to or knowledge of childhood cancer. And I had very little idea what kind of work I’d even be doing, with a pretty generic job description of “helping out where needed.”

So, what kept me here? Well, a few things certainly helped: a great boss and coworkers (a trend that fortunately has continued to today!), the ability to grow professionally into a role that suits me best, and a flexible working environment. That last one was especially key when I decided to leave DC after two years in our office and move back home to the Midwest.

But those are all things I could find somewhere else if I wanted to.

What ultimately keeps me here, year after year, are the kids we serve.

2008, at a CCCA event: Me and my friend Kim, a childhood cancer survivor.

2008, at a CCCA event: Me and my friend Kim, a childhood cancer survivor.

Diving into the scope, science and statistics of childhood cancer is an eye-opener for anyone new to this world. But what really generated a personal investment in this cause was meeting families and survivors and hearing their stories.

In the early years of my work with CCCA, I helped put on young adult survivorship conferences around the country, where I was humbled and inspired by my peers who had been through so much more in their young lives than me. One of those survivors I met in my early days with CCCA is now my daughter’s Godfather and a dear friend. With every new family that I meet, I grow more passionate about our mission of creating a future where every child with cancer can live a long and healthy life.

And here’s the most rewarding part of all: what we do is creating that future. Our work is unique in the childhood cancer community because we are almost exclusively focused on policy and advocacy. That means our work is wonky and complex, and the progress we make often feels like it comes at a glacial pace. Legislation typically takes years to advance into law – and even longer to start changing things in the real world. When you’re working with kids who don’t have the luxury of time, that progress can feel agonizingly slow. But – it’s happening.

Here are just a handful of our big policy achievements over the years:

  • Passage of the Affordable Care Act, which lifted lifetime caps on coverage, extended care for survivors on their parents’ plans, and secured pre-existing condition protections for our kids. We spoke up as a voice for kids with cancer during healthcare reform discussions – as we continue to do today.
  • Protected funding for the National Cancer Institute, by fighting appropriations battles year after year after year. We operate with a fundamental understanding that federal funding is especially critical in childhood cancer, where patient populations are small and unprofitable. Some years, these battles have been particularly tough and the outcomes unfavorable, as we experienced with 2013’s sequestration cuts. But, with children’s lives on the line, we never have and never will stop telling Congress how vital a fully funded NIH is to achieving new therapies and new cures for our kids.
  • Passed the RACE for Children Act into law – just this month!! We were involved with the earliest iterations of this legislation, fighting for passage of 2012’s FDA Safety and Innovation Act – and then fighting to improve it ever since. The acronyms BPCA and PREA have been daily lexicon within the Children’s Cause for years, and we now celebrate this hard-fought achievement while looking forward to the work that comes next, where patient advocates are part of the discussion with FDA about what drugs should be developed for kids.

The next big achievement on the horizon – which I hope we can celebrate yet this year – is passage of the Childhood Cancer STAR Act. This bipartisan bill is the most comprehensive legislation ever taken up by Congress and it has the support of over 60% of the U.S. House. The survivorship provisions in this bill are especially exciting to me. Children’s Cause has been advocating for survivorship legislation ever since I can remember, and this bill contains our best survivorship provisions. Its passage would be the culmination of many years’ worth of research, relationship-building and hard work.

2015, Alliance for Childhood Cancer Action Day

2015, Alliance for Childhood Cancer Action Day

Many of these achievements were made possible because of strong and impactful community coalitions. We were founding members of the Alliance for Childhood Cancer and spurred the first Alliance-led Action Days, which is now an annual event bringing 150-200 advocates to DC every spring. In 2013, we helped launch the Coalition Against Childhood Cancer (CAC2), a collaborative coalition whose Board I am proud to currently serve on.

Make no mistake about it: we’ve got a long way to go.

2,500 children still die every year from cancer – 2,500 too many. Survivors – a cohort expected to reach half a million by 2020 – are still burdened with a lifetime of late effects that impact their long-term quality of life. The financial impact of childhood cancer is burying families in debt while they fight for their child’s life.

2017: My kids this summer at our local county fair.

2017: My kids this summer at our local county fair.

Five years ago, when I became a new mom, this work took on a deeper level of meaning for me.

When I look at my own children and imagine the unimaginable – one of them becoming one of the 1-in-320 kids who will receive a cancer diagnosis in their childhood – I am propelled to keep fighting.

I fight for a world where every oncologist who must utter the words “your child has cancer” can immediately follow up with “and we have a cure.”

Ten years from now – with continued policy progress and a robust investment in medical research – I think we will be much closer to that world.

Congress Must Act for Kids: Pass a Clean CHIP Renewal

As you may have noticed, there isn’t much being accomplished in Washington these days. And sometimes, that’s a good thing. But right now, many children with cancer and other serious health problems are depending on Congress to act quickly to avoid putting their healthcare at risk.


On October 1, the Children’s Health Insurance Program (CHIP) will expire and - if not renewed - millions of vulnerable children would face a loss of critical health insurance coverage. While most states could manage to keep CHIP running briefly past the October 1 expiration of federal funding, advocates have noted there will be disruptions to the program before states exhaust that funding. 

In the childhood cancer community, we’re asking Congress to pass a clean, five-year CHIP renewal without any extraneous, complicating attachments. 

See also: Children's Cause sends CHIP letter to Senate HELP and House E&C Committee chairmen: Read Letter → 

CHIP was enacted in 1997 to help states reduce the numbers of uninsured children.  It focuses on low-income kids in working families who don’t have access to job-based coverage but earn too much to qualify for Medicaid.  Some 36 million children in this country are covered by Medicaid and/or CHIP.  Approximately one third of children with cancer depend on these programs for their treatment.  Since the program started, the uninsured rate for children age 18 and under has fallen by 67.9%, from 14.9% to 4.8%. In 2014, there were 4.4 million uninsured children, down from 10.7 million in 1997.

CHIP is structured as a federal-state partnership designed to give governors flexibility in structuring their CHIP programs. Unlike Medicaid, CHIP was established as a 10-year block grant to states rather than as an individual entitlement program -- which means: it must be renewed.

Over its twenty-year life, CHIP has been a winner for states and children alike. The program has a unique structure that encourages states to reduce the number of uninsured kids and improve health outcomes. It ensures that children have access to pediatric- specific provider networks and includes important financial protections for families that cap out-of-pocket costs for premiums and cost-sharing at 5% of total income.

If Congress doesn’t renew CHIP by October 1, most states would run out of money by early 2018, jeopardizing the care of millions of children. The children who lose CHIP will face much higher costs in private insurance – if they have or can get it – or have no other coverage option to rely on. Families facing a childhood cancer diagnosis will face significantly higher out-of-pocket costs.

The failure of Congress to act would be an enormous and needless step backwards for children. The Children’s Cause has joined with dozens of other pediatric organizations to encourage a clean, five-year program that will ensure coverage continues for our most vulnerable kids. You can help right here by sending your legislator a message - below - urging them to pass a new CHIP bill in September:

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!