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On January 30th, we hosted a webinar about the latest ground-breaking developments in childhood cancer research, with a specific focus on immunotherapy and precision medicine.

“It’s really important to have realistic expectations [around precision medicine] and much more study is needed.”
— Dr. Dan Wechsler

The full recording of that webinar is available at the end of this post but we wanted to share some highlights, since it was jam-packed with valuable information:

Dan Wechsler, MD, PhD, of Children’s Healthcare of Atlanta - and a Children’s Cause Board Member - kicked off this hour-long event with a presentation on the “Promise and Pitfalls of Precision Pediatric Oncology.” Dr. Wechsler started off by describing the vision of precision medicine in a way that’s easy to grasp:

“What we would like, ideally, to do with cancers in both children and adults is do what we do when someone has a bacterial infection,” said Dr. Wechsler.

He explains: when someone has a bacterial infection, we take a sample of the bacteria and find out if it is sensitive or resistant to antibiotics. The treating physician then knows exactly which medication(s) will treat that exact infection. It’s more complicated with tumors, so oncologists traditionally practiced “one size fits all” medicine in cancer therapy. But now, with precision medicine, we’ve started to move toward tailoring treatment to the individual patient.

Dr. Wechsler also walked us through the ‘life cycle’ of precision oncology, as seen in this slide:

Dr. Wechlser discussed different types of sequencing that are available, emphasizing that not all sequencing is the same. The average cost of sequencing is currently about $5,000 per specimen, with a turnaround time of about 2-4 weeks.

He shared some of the many reasons why success in precision medicine is still hampered by a lot of roadblocks in pediatrics:

  • There are over 20,000 genes in the human genome and we don’t know much about many of them. Just because we find a mutation doesn’t mean we fully understand it.

  • Even if genes are well understood, there may be no specific drugs available, like in patients who have a mutated gene that predisposes them to tumor development (p53 in Li Fraumeni).

  • Even if there are drugs available, they may not be approved yet for use in children.

  • We still don’t know enough about which combinations of drugs - either with standard therapies or other gene therapies - will be most effective.

  • Cost, turnaround time, a lack of clinical trials and limited drug availability are additional challenges in precision medicine.

But despite those challenges, Dr. Wechsler emphasizes that genetic sequencing is still incredibly valuable, even when it doesn’t unveil an option for immunotherapy. For instance, we learn information about cancer biology that furthers the field of study and often the sequencing can help confirm or refine a diagnosis and give additional information about how a specific patient might respond to a particular treatment.

Sequencing also can reveal information that points to a predisposition to cancer, which can have implications for the patient - like avoiding radiation therapy - and, of course, implications for other family members. Currently 10-15% of pediatric cancers are thought to have a genetic predisposition but that number could be as high as 30-40%. “All of these issues highlight the need for genetic counselors to be involved in precision medicine,” says Dr. Wechsler.

Next, we heard from Dr. Robbie Majzner, a pediatric oncologist at Stanford. Dr. Majzner gave an overview of different types of immunotherapy:

  • Monoclonal Antibodies: A ‘tag’ that recognizes something specific on the cancer cell and marks that tumor cell for targeting by the immune system. This has been successful with B-cell lymphoma, revolutionizing adult and pediatric lymphoma treatment.

  • Antibody-Drug Conjugates: Hook chemotherapy, toxic or radiation directly to an antibody to target specifically to a cancer cell, which is less toxic than systemic chemo but still more aggressive than an antibody by itself. An example is brentuximab, a conjugate used for treatment of Hodgkin lymphoma.

  • T-cell Checkpoint Inhibitors: T-cells are the most potent immune cells and can recognize and kill mutated cancer cells. The discovery of checkpoint inhibitors - which protect healthy cells from T-cell attack - won the Nobel Prize last year but the advances from that breakthrough have mostly benefited adults. That’s because most pediatric tumors lack mutations so there isn’t anything for the T-cells to search for and react against.

  • CAR-T cells: Chimeric Antigen Receptor (CAR) combines an antibody with the T-cell receptor through genetic engineering. The result is a man-made synthetic receptor that seeks-and-destroys cancer cells. “This has really revolutionized the care of children with relapsed ALL,“ said Dr. Majzner. “It’s really been an amazing thing to watch, a technology that was developed by academics in the laboratory go through iterations with improvements in technology to become a very clinically relevant therapeutic and also first-in-class to be FDA approved for the treatment of children with cancer.”

“The dream would be that we ultimately get to a place where we need limited chemotherapy, if any, and we can just use immunotherapy and do it at a point where there’s less disease burden so that the toxicity is not as much of a concern. ”
— Dr. Jennifer Willert

Our final presenter was Dr. Jennifer Willert, a hematologist-oncologist currently working for Novartis Pharmaceuticals. Dr. Willert discussed the manufacturing process of Kymriah, the first FDA-approved individualized immunotherapy (CAR-T) for pediatric and adult lymphoma. Kymriah - approved in 2017 - is the commercial version of the therapy famously used to treat Emily Whitehead, the first pediatric patient to receive CAR-T treatment, back in 2012.

The commercial version of Kymriah is approved for patients 18-and-over but there are exceptions for younger patients, plus a number of clinical trials in the pipeline. Today, says Dr. Willert, Novartis is focused on improving access to this therapy in the US and globally and ensuring that it is delivered safely at all available centers.

“Most of us in the field are really dreaming of a future where we can utilize the immune system rather than toxic agents like radiation and chemotherapy and bone marrow transplant … in order to really cure patients,” says Dr. Willert. “These are little kids and young adults that have their whole life ahead of them and late effects are significant. We are hoping we can minimize this with this therapy. Patients that have received CAR-T are able to go home and go to school and play and be with their families within a month of treatment and have a pretty normal immune system within one month to two months and that just isn’t the case in the transplant world.”

The full webinar recording is available here:
Hope On The Horizon New Treatments For Childhood Cancer - YouTube

Our next webinar will take place on March 27 and will revisit the Externally-Led Patient Focused Drug Development conference on chemotherapy-induced hearing loss that we held last fall. If you’d like to receive the finished report from that workshop and information on webinar registration, let us know here:

Name * Name First Name Last Name Email Address * Thank you!  
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The ongoing partial government shutdown is now the longest in U.S. history, with no certain end in sight. While the impact of the shutdown is wide and far-reaching, at the Children’s Cause we are focused on the Food and Drug Administration, an agency that has a direct impact on the development of life-saving therapies for our kids.

FDA Commissioner Scott Gottlieb, MD, has stated that the agency will run out of drug approval funds sometime in February if the shutdown continues. About 45% of the FDA’s budget comes from “user fees” - fees paid by industry to review drug applications. But since the shutdown began, no new applications or fees can be accepted, so those funds will run dry in about four weeks.

According to the latest news reports:

  • From CNBC: “[The shutdown] could create big problems for drugmakers, especially those that may be low on cash and scrambling to push new, innovative drugs to the market to stay in business, analysts say. Delays wouldn't just impact companies with pending applications but those waiting to file once the shutdown ends.”

  • From the National Law Review:  “The Prescription Drug User Fee Act, which authorizes FDA to collect fees from companies that produce certain human drug and biological products, is the most vulnerable program, likely to run out of money the first week of February. Manufacturers, researchers, and others involved in the creation of these products should continue to monitor for developments but should expect likely delays in all FDA review activity.”

  •  From the Wall Street Journal: “On or about Feb. 8, the agency will have to stop work on applications for new drugs, the FDA said. According to senior agency officials, the FDA’s 2,000 new-drug and medical-device employees can’t be called in to do unpaid work, and would instead be furloughed. … One FDA official said that advisory committees of outside doctors—essential to the drug approval process—are close to being canceled.”

Yesterday, January 22, the Children’s Cause joined with 45 other public health organizations in sending a letter to the President and Congressional leaders. Our letter asks the President and Congress to take action to immediately bring the FDA back to full capacity, to prevent the snowballing impact of ongoing disruptions to the agency.

Here’s more of what we shared with President Trump, Speaker Pelosi, Majority Leader McConnell, and Minority Leaders McCarthy and Schumer:

“On behalf of patients across this country, we are greatly concerned that the agency is currently not fully funded, and thousands of vital FDA employees are not working or able to operate at full capacity. While we applaud Commissioner Gottlieb, FDA leadership, and “essential staff” for truly heroic work to keep many aspects of its mission functioning, we fear that this continued shutdown not only puts the current health and safety of Americans at risk, but has begun to put future scientific discovery and innovation in jeopardy.

The ongoing government shutdown forces the FDA to make difficult choices regarding to which essential functions its greatly reduced resources are directed. These are decisions that never should have to be made— the health and safety of Americans today should never be weighed against the prospect of new life-saving therapies for patients. Tragically, that is what is happening.”

By all reports, the approval backlog created by the shutdown is likely to have long-lasting implications on the agency - beyond the shutdown’s end - so we will be monitoring this situation for the foreseeable future and will keep you posted. Be sure you’re on our email list to receive the most up-to-date news and alerts about this and other childhood cancer policy issues:

 
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The kick-off of the 116th Congress has been overshadowed by the drama of the ongoing government shutdown. But that doesn’t mean Washington has come to a complete standstill, and neither have we. We’ve been busy working on our policy agenda for this Congress and we’ll have action alerts on legislation as it gets introduced.

For now, we ask that you take moment to introduce yourself to your Members of Congress and share with them your childhood cancer story. By making these early introductions, you set the stage for ongoing communications with your Member — and make sure they know early on that constituents in their district care deeply about children with cancer and childhood cancer survivors.

We’ve made this introduction easy by providing the template and form below. Just add in your information and a bit of your story!

Thank you for all that you do for our kids!

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We have been closely watching and following the aftermath of the recent ruling by a federal district court judge (Texas v US) that declared the Affordable Care Act unconstitutional.

As a member of the Cancer Leadership Council, we signed on to a joint statement about this ruling and its potential impact on people with cancer and cancer survivors.

We want to emphasize this key point:  The Affordable Care Act remains in place pending appeal.

More from the CLC letter:

Our organizations, representing the millions of Americans diagnosed with cancer, express serious concerns about the decision that invalidates the Affordable Care Act. This ruling would eliminate the protections that are critical to people with cancer, including pre-existing condition protections, benefit standards, and cost-sharing protections. These are the provisions of the Affordable Care Act that have protected access to adequate and affordable health insurance for people with cancer.

The decision of the federal district court takes us back to a time before the Affordable Care Act when people with cancer were routinely denied insurance.

Our first act will be to communicate to people with cancer that the law will remain in place pending appeal. Those who purchase insurance through the exchanges and those who are covered by Medicaid can rest assured that their coverage is protected during the appeal process. And all Americans who benefit from the consumer protections of the Affordable Care Act will continue to enjoy those protections.

You can find the full letter - and our other recent policy letters - here.

The Department of Health and Human Services issued a statement that also underscored the key point that this ruling is not a final say. Since the court did not issue an injunction, the agency will continue to administer and enforce the ACA uninterrupted. In fact, the Administration will continue to enforce the ACA until the Supreme Court weighs in, which won’t happen until 2020 at the earliest.

The American Medical Association also weighed in on the decision (4 Things Physicians Should Know), outlining what’s at stake for patients. For those with cancer, here are three of the ACA protections that groups like the AMA and CLC are most concerned about:

  • Access to their parents’ plan coverage for young adults up to age 26.

  • Elimination of annual and lifetime caps on benefits.

  • No pre-existing condition coverage exclusions or medical underwriting.

For more, visit the nonpartisan Kaiser Family Foundation for an in-depth policy analysis.

Kaiser writes: “More than eight years after enactment, ACA changes to the nation’s health system have become embedded and affect nearly everyone in some way. A court decision that invalidated the ACA, therefore, would also affect nearly everyone in at least some way. “

 
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  The House of Representatives passed the ACE Kids Act on December 11th!Now, we push for passage of its companion legislation (S.428) in the Senate before this legislative session comes to a close.

Please join us by sending a letter to your Senators!

The Advancing Care for Exceptional Kids Act of 2017 would take an important step toward fixing the fragmented healthcare system for children with medically complex conditions - like childhood cancer. 

The ACE Kids Act would improve care for approximately two million children with medical complexities in the Medicaid program. The bill would provide more consistency for children with medical complexity as they often need to travel across state lines for care, which currently results in coverage issues since Medicaid coverage may differ from state to state. We've been honored to join the nation’s leading children’s hospitals, along with the Children’s Hospital Association, in supporting this legislation. 

Please continue to follow us on FacebookTwitter and Instagram for updates and action steps in the coming days.

Providing children with complex medical conditions enrolled in Medicaid the best possible care is a national challenge, and the ACE Kids Act will bring us closer to ensuring these vulnerable children receive the care they need. 

Thank you for helping us get this bill across the finish line in the final days of this legislative session!

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We are busy following the final days of the 115th Congress — and also preparing for the new Congress, which begins on January 3rd. There’s a lot of behind-the-scenes maneuvering happening in Washington right now, as new leaders and committee chairs are selected. And there’s literal maneuvering as office spaces transition to make way for incoming occupants.

We know everyone is so busy in December but we wanted to share a couple of ways that you can help make a difference with some easy advocacy this holiday season:

Out with the old:

Lawmakers were hoping to head home for the holidays next week with a wrapped-up session but it is now looking likely that they’ll be working right up until Christmas, as there are outstanding appropriations bills that need to be dealt with — including funding for the Food and Drug Administration.

Since they’re around for a bit longer, we’re continuing to push for the DIPG Awareness Resolution in the final days of this session. Use our action alert to send your letter in 30 seconds! We’ll be joining our friends at the Jack’s Angels Foundation to push for reintroduction of this legislation next session - in both Chambers - and having even a few more cosponsors now puts our community in a stronger position to reintroduce the bill in 2019.

In with the new:

Once the new Congress begins in January, we'll have an action alert aimed at freshmen Members of Congress — it will be an easy way for you to share your childhood cancer story with your new Senator or Representative and tell them about some of the legislative issues that impact our kids.

In the meantime, we invite and encourage you to remember your Members of Congress when you send your holiday cards!

This is a small but thoughtful action step you can take this holiday season to set the stage for your continued communication in the 116th Congress. Meaningful change in Washington comes from advocates like you forming strong relationships with your representatives and sharing your personal, emotional experiences and stories. (Be sure to include a photo of your family!)

You can find your Representative’s address here and your Senator’s address here. We recommend sending your card to the nearest District office, since Members will be spending more time working in those offices over the holidays.

If you have a Member-elect who is not yet sworn in, you might be able to track down a mailing address with a quick Google search. If not, send them a friendly holiday email or tweet. A little can go a long way!

If you have any existing relationships with current or incoming Members of Congress, please let us know with the form below.

Knowing who has strong contacts with a particular Member helps us do better targeted advocacy on key issues.

Name * Name First Name Last Name Email Address * Which Member(s) of Congress do you know? What's the nature of your connection? * Thank you!  
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The 2018 midterm elections have implications for children with cancer at both the federal and state levels.  The write up below explores these issues in more detail. 

United States Congress:

With a divided Congress, health policy initiatives will require bipartisan action which means uncontroversial authorizing legislation and bipartisan efforts on bills. 

Pre-existing Conditions:

For children with cancer, treatment means pre-existing conditions forever. Election Day exit polls showed health care was the top concern for voters. Insurance coverage for pre-existing conditions became a key issue in the closing days of the 2018 midterm elections, and it will continue to be a focus of childhood cancer advocates’ attention as Congress considers changes in the Affordable Care Act.

The Democrat’s control of the House means an effective veto to Republican efforts to repeal the Affordable Care Act and impact pre-existing conditions. 

Children’s Cause will continue to protect coverage for survivors so that care can never be denied because of a child’s cancer history.

Prescription Drug Costs:

Debates will continue in Washington about how to address the skyrocketing cost of prescription drugs.  While a comprehensive drug pricing solution remains a difficult policy goal to achieve, both parties are interested in smaller reforms, like increasing transparency around drug makers' relationships with pharmacy benefit managers.  Democrats will likely continue to press for government negotiation on drug prices - which President Trump supported before his election.

This issue will increase in importance as new “precision” medicines address hard-to-treat cancers. Precision medicine holds the promise of treating children with cancer with fewer long term and late effects, but these drugs are extremely expensive. Their pathway to the clinic is complex and expensive for biopharmaceutical companies to develop, and because they address only a few patients whose cancers have rare characteristics, they are not blockbuster drugs.

Childhood cancers are a host of rare diseases, each one now understood to consist of many different subsets. The cost of drugs to treat only a handful of children a year will be astronomical for companies and shareholders to continue their investment.

Childhood cancer advocates, including the Children’s Cause, will be watching discussions of drug prices closely in order to ensure that cost does not prevent children from having access to new agents that can be more effective and less toxic than current regimens.

Medicaid:

At least one-third of childhood cancer patients depend on Medicaid coverage for their care. Most children are treated in the context of clinical trials, and their routine care is covered by insurance while the research costs of a trial are covered by a sponsor (most often the National Cancer Institute).  Families would suffer exorbitant expenses for care if Medicaid did not cover routine medical care as children are treated. 

To protect families and children’s care, Children’s Cause will support the reintroduction of the Clinical Treatment Act during the next Congress so that states’ Medicaid plans will be required to cover these costs.

Health Care Committees:

With Democrats taking control in the House, the leadership will appoint new Chairs to the health authorizing Committees.  At the House Energy and Commerce Committee, the likely chairman is Rep. Frank Pallone (D-NJ) with Rep. Greg Walden (R-OR) as the likely ranking member. At the Energy and Commerce Health Subcommittee the likely chairman is Rep. Anna Eshoo (D-CA) with Rep. Mike Burgess (R-TX) as ranking member.

At the House Ways and Means Committee, the leadership will remain unchanged except for a power swap, with Rep Richard Neal (D-MA) taking the gavel and Rep. Kevin Brady (R-TX) serving as the ranking member.  At the Ways and Means Subcommittee, the possible new chair is Rep. Lloyd Doggett (D-TX) and Rep. Vern Buchanan (R-FL) as ranking minority. 

In the Senate, Sen. Chuck Grassley (R-IA) will probably assume the chairmanship with Sen. Hatch (R-UT) retiring and Sen. Ron Wyden (D-OR) remaining as ranking minority.

State Policy:

Medicaid changes in the states are likely after last night’s election.  New Governors could influence Medicaid expansions across the country.  Governors could expand Medicaid in Kansas, Maine and Wisconsin after Democrats won races in those states.  States considered and approved Medicaid expansion ballot initiatives in three states - Utah, Idaho and Nebraska.

Children’s Cause is tentatively planning a webinar in early December to explore these issues further before the new Congress begins in January. Make sure you don’t miss the announcement around this and our other upcoming events and action opportunities:

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“We need the work of Children’s Cause more today than we ever have.”
— Dr. Peter Adamson

(left-right) George Dahlman, CCCA Executive Director; Susan Scherr, Board Member and New York Event co-chair; Dr. Peter Adamson, Honored Speaker; Dr. Julia Rowland, Rosen Award Recipient; Adam Rosen, Board Member

The Leonard M. Rosen Memorial Research Award is presented annually at the Children’s Cause Cocktail Reception in New York City. This year, Children’s Cause was proud to present the 3rd Annual Rosen Award to Julia Rowland, PhD, the Senior Strategic Advisor at the Smith Center for Healing the Arts.

Dr. Rowland was formerly the Director of the Office of Cancer Survivorship at the National Cancer Institute, and she is widely recognized as a national and international scholar, researcher and leader in the psychosocial aspects of cancer care broadly and cancer survivorship specifically.

In the 1970s, Dr. Rowland was on the front-lines of early survivorship research in the 1970s at Memorial Sloan-Kettering. In her Rosen Award acceptance speech, she described this time of early survivorship research: “This was incredibly exciting science. The focus was shifting away from how long we could help these children live to look at quality of life and function being as important as length of life. To me, that was the start of cancer survivorship — a movement that caught me and I’ve been hooked ever since.”

Dr. Rowland’s work in the survivorship space continues to this day:

“Currently, I’m in the process of creating a way for treatment centers across the country to do a self-assessment to evaluate their capacity - staff, systems, resource, commitment needed - to provide the [recommended Standards for the Psychosocial Care of Children with Cancer and their Families.]”

As a recipient of the Leonard M. Rosen Memorial Research Award, Dr. Rowland receives $10,000 in recognition and support of her work. In accepting this award, she described how these funds will help support her current endeavors: “I’m hoping to use the Rosen Award funds to conduct demonstration projects at a handful of sites that will examine how this tool can be used to enhance the capacity to deliver high quality care, the ultimate goal being to improve the psycosocial care available and delivered to childhood cancer survivors and their families.”

Watch Dr. Rowland’s Speech →

We were also honored to be joined by Dr. Peter Adamson, Chair of the Children’s Oncology Group, who spoke about the changing landscape of treatment with advances in immunotherapy.

Dr. Adamson shared the story of Emily Whitehead, who was treated for leukemia six years ago by Dr. Adamson’s colleagues at the Children’s Hospital of Philadelphia. Emily was the first child to receive T-cell immunotherapy, at age 6 after all traditional treatments had failed. “Emily was the first child to receive this and there were a lot of unknowns,” said Dr. Adamson, describing the ‘cytokine storm’ that saved Emily but also almost killed her.

“Getting through any kind of treatment carries risk and especially for children significant risk,” said Dr. Adamson. “What we’re about to do nationwide - wherever a child may be at one of our 200+ [COG] centers - If we identify a child where we think our [traditional] therapy is going to fail, instead of sending them to transplant [with incredible side effects], we’re going to try to cure them with CAR-T cells, with cellular therapy, and prevent all the side effects of transplant.

We don’t know if we’re going to be successful but we know this is where we need to go. We know this is where we take an advance that began at one center, is now growing at a number of centers, and we bring it to every child with leukemia in the country.”

Dr. Peter Adamson speaks to Dr. Michael Link at our New York Reception, 2018. Dr. Link serves on the CCCA Board of Directors.

We thank Dr. Rowland and Dr. Adamson for joining us and sharing their insights into the current landscape of childhood cancer, specifically around survivorship and immunotherapy.

We also thank event co-chairs Susan and Stephen Scherr and Lynn Bayard - and the entire Event Committee - for hosting another successful event. Thank you to Sarah Merians Photography for these beautiful images (see more on Facebook!) and to silent auction donors and Designs that Donate for offering up beautiful merchandise.

Finally, thank you to every donor for so generously supporting our advocacy work in Washington. Your support enables us to be a stronger voice for children with cancer and their families all year long.

“Children’s Cause has been the pioneer in advocacy for children with cancer. In my time leading the Children’s Oncology Group and even before that, the advocacy community in pediatric cancer was quite limited, and we needed Children’s Cause to bring a laser-light focus to what needed to be done but to also help organize advocates from around the country to say how can we be more impactful.

And the reason this is so important now is we need to partner with biotech, we need to partner with pharma, but we need ways that make it viable for these companies to do that: creating incentives, as well as requirements. Caring for the more than half-million children who are now survivors of childhood cancer.

We need advocacy in Washington - on the Hill, we need advocacy at the NIH and increasingly we need advocacy globally. And Children’s Cause is leading these efforts.” - Dr. Adamson, COG Chair

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“We need the work of Children’s Cause more today than we ever have.”
— Dr. Peter Adamson

(left-right) George Dahlman, CCCA Executive Director; Susan Scherr, Board Member and New York Event co-chair; Dr. Peter Adamson, Honored Speaker; Dr. Julia Rowland, Rosen Award Recipient; Adam Rosen, Board Member

The Leonard M. Rosen Memorial Research Award is presented annually at the Children’s Cause Cocktail Reception in New York City. This year, Children’s Cause was proud to present the 3rd Annual Rosen Award to Julia Rowland, MD, the Senior Strategic Advisor at the Smith Center for Healing the Arts.

Dr. Rowland was formerly the Director of the Office of Cancer Survivorship at the National Cancer Institute, and she is widely recognized as a national and international scholar, researcher and leader in the psychosocial aspects of cancer care broadly and cancer survivorship specifically.

In the 1970s, Dr. Rowland was on the front-lines of early survivorship research in the 1970s at Memorial Sloan-Kettering. In her Rosen Award acceptance speech, she described this time of early survivorship research: “This was incredibly exciting science. The focus was shifting away from how long we could help these children live to look at quality of life and function being as important as length of life. To me, that was the start of cancer survivorship — a movement that caught me and I’ve been hooked ever since.”

Dr. Rowland’s work in the survivorship space continues to this day:

“Currently, I’m in the process of creating a way for treatment centers across the country to do a self-assessment to evaluate their capacity - staff, systems, resource, commitment needed - to provide the [recommended Standards for the Psychosocial Care of Children with Cancer and their Families.]”

As a recipient of the Leonard M. Rosen Memorial Research Award, Dr. Rowland receives $10,000 in recognition and support of her work. In accepting this award, she described how these funds will help support her current endeavors: “I’m hoping to use the Rosen Award funds to conduct demonstration projects at a handful of sites that will examine how this tool can be used to enhance the capacity to deliver high quality care, the ultimate goal being to improve the psycosocial care available and delivered to childhood cancer survivors and their families.”

We were also honored to be joined by Dr. Peter Adamson, Chair of the Children’s Oncology Group, who spoke about the changing landscape of treatment with advances in immunotherapy.

Dr. Adamson shared the story of Emily Whitehead, who was treated for leukemia six years ago by Dr. Adamon’s colleagues at the Children’s Hospital of Philadelphia. Emily was the first child to receive T-cell immunotherapy, at age 6 after all traditional treatments had failed. “Emily was the first child to receive this and there were a lot of unknowns,” said Dr. Adamson, describing the ‘cytokine storm’ that saved Emily but also almost killed her.

“Getting through any kind of treatment carries risk and especially for children significant risk,” said Dr. Adamson. “What we’re about to do nationwide - wherever a child may be at one of our 200+ [COG] centers - If we identify a child where we think our [traditional] therapy is going to fail, instead of sending them to transplant [with incredible side effects], we’re going to try to cure them with CAR-T cells, with cellular therapy, and prevent all the side effects of transplant.

We don’t know if we’re going to be successful but we know this is where we need to go. We know this is where we take an advance that began at one center, is now growing at a number of centers, and we bring it to every child with leukemia in the country.”

Dr. Peter Adamson speaks to Dr. Michael Link at our New York Reception, 2018. Dr. Link serves on the CCCA Board of Directors.

We thank Dr. Rowland and Dr. Adamson for joining us and sharing their insights into the current landscape of childhood cancer, specifically around survivorship and immunotherapy.

We also thank event co-chairs Susan and Stephen Scherr and Lynn Bayard - and the entire Event Committee - for hosting another successful event. Thank you to Sarah Merians Photography for these beautiful images (see more on Facebook!) and to silent auction donors and Designs that Donate for offering up beautiful merchandise.

Finally, thank you to every donor for so generously supporting our advocacy work in Washington. Your support enables us to be a stronger voice for children with cancer and their families all year long.

“Children’s Cause has been the pioneer in advocacy for children with cancer. In my time leading the Children’s Oncology Group and even before that, the advocacy community in pediatric cancer was quite limited, and we needed Children’s Cause to bring a laser-light focus to what needed to be done but to also help organize advocates from around the country to say how can we be more impactful.

And the reason this is so important now is we need to partner with biotech, we need to partner with pharma, but we need ways that make it viable for these companies to do that: creating incentives, as well as requirements. Caring for the more than half-million children who are now survivors of childhood cancer.

We need advocacy in Washington - on the Hill, we need advocacy at the NIH and increasingly we need advocacy globally. And Children’s Cause is leading these efforts.” - Dr. Adamson, COG Chair

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Thank you to Kathleen Gallagher of the Patient Advocate Foundation for manning our shared poster presentation at this month's 2018 ASCO Quality Care Symposium!

The data presented comes from a joint survey conducted last year by the Children's Cause and the Patient Advocate Foundation (PAF). The survey sought to identify financial challenges in access to care, such as insurance barriers, coverage limitations and denials, high copays and extraordinary out-of-pocket costs.

A total of 343 respondents completed the 2017 survey, evenly split between caregivers and survivors. 

  • Among caregivers, one-third reported insurance denials for treatment, and 44% reported some level of financial hardship. Among the 44% of respondents reporting financial hardships, 4-in-10 had annual out-of-pocket costs exceeding $5,000. Beyond medical expenses, respondents identified employment and transportation costs, with 87% reporting compromised work schedules and over half reporting trouble getting their child to and from appointments.

  • For survivors, 27% reported not receiving follow-up care at a late effects clinic, with 1-in-4 reporting that their cancer care impacted their ability to pursue higher education and 30% reporting that the cost of their medical care impacted their career course or job choice.

We have just completed another round of surveying families and will be incorporating this new data to build upon what we learned last year and continue to refine our policy efforts accordingly.

Abstract from ASCO Meeting Library→
Poster Presentation →

If your family is struggling and you need help now, we encourage you to start by exploring the Hope Portal, a searchable database of support resources for families of childhood cancer. You can find organizations that serve your area and help with home expenses or medical bills.
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