200 Advocates Ask Congress to Pass STAR Act at Action Days

Group Photo Credit: St. Baldrick's Foundation
Right: Susan L. Weiner, PhD, presents at Advocate Training session

Over 200 advocates from 37 states joined together last week for Childhood Cancer Action Days, hosted by the Alliance for Childhood Cancer.

Advocates asked their Representatives to pass the Childhood Cancer STAR Act, which the Senate unanimously passed last month. The Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act is the most comprehensive childhood cancer legislation ever taken up by Congress.

You can still take action from home to back up the impact these advocates had on the Hill. Find out how.

Our task now is to get the bill to committee and onto the House floor for a vote, so we can get it signed into law as quickly as possible. Please join in this effort while we have momentum from Action Days!

Be sure you're following Children's Cause on Facebook, Twitter and Instagram for the latest on the STAR Act. Thank you for helping us get this bill signed into law. 

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Securing a Strong Federal Budget for Medical Research

Fiscal Year 2018
The National Institutes of Health received a $3 billion funding increase as part of a $1.3 trillion appropriations deal passed by Congress last month. This $37 billion budget for NIH represents an 8.8% increase, the biggest percentage increase seen by the NIH in the past 15 years. President Trump signed the FY2018 omnibus into law – but has reportedly been considering a rescission package. Rescission is a process by which the president formally requests (within 45 days of a spending bill’s passage) that Congress backtrack and cut out some of what has already been signed into law.

A large and united community of public health and medical advocates spoke up to ensure strong funding for the National Institutes of Health – and now we speak up once again to protect that funding. We’re asking advocates to call, email or tweet their Senators and Representative today and urge them to defend the budget and rebuff any attempt at rescission that would put life-saving research funding at risk. Our action alert makes it quick and easy.

Fiscal Year 2019
President Trump sent his FY2019 budget request to the Hill just days after the FY2018 omnibus passed and - because of the timing - didn't include any of the funding agreements reached in the 2018 budget. Instead, the Administration's budget includes cuts to most of the health programs that children with cancer and their families rely upon.

Despite the bipartisan deal by Congress to boost domestic spending to $597 billion, the Trump budget includes only $540 billion in such funding, which puts a squeeze on NIH and NCI. In terms of Medicaid, the budget proposes various policy changes that will negatively impact the health and well-being of children and families who rely on this program. On our blog, we share a sampling of what's at stake for our community. 

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Chemotherapy-Induced Hearing Loss to be Explored in PFDD Workshop

Chemotherapy-induced hearing loss in pediatrics will be the focus of an upcoming Patient Focused Drug Development (PFDD) workshop in Washington, D.C. The Children's Cause, in partnership with other childhood cancer organizations including Mattie Miracle Cancer Foundation and the Children's Brain Tumor Foundation, will host an FDA-approved PFDD meeting on September 13th.

The half-day meeting will feature panel presentations by survivors, parents, and medical specialists with an opportunity for public comment and input. This will be a chance for those affected by chemo-induced hearing loss to give the FDA the benefit of their experience. If you're interested in this meeting, please fill out the interest form so we can keep you posted on details and registration.

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Quick Links | Recommended Reading

• Larotrectinib proves 93% effective in kids: A new phase 1 clinical trial finds a new cancer drug, larotrectinib, to have a "nearly universal response rate" in treating pediatric patients with a fused gene called TRK, which is found in several types of solid tumors. (The Lancet, 3.29.18)
• Genetic screening for leukemia improves: Researchers at St. Jude have discovered a fourth gene (IKZF1) that can predispose carriers to B-cell acute lymphoblastic leukemia. (Cancer Cell, 4.19.18)

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Upcoming Events

• Children and Cancer Forum, May 22: The Atlantic will host its second annual childhood cancer forum at the Newseum on May 22nd from 8-11am. This event brings together physicians, policymakers, activists and health care leaders to examine the state of pediatric cancer care and look towards innovations in the future. Learn more.
• CAC2 Annual Summit, June 12-14: The Coalition Against Childhood Cancer (CAC2) is hosting its annual Summit and membership meeting from June 12-14th in Seattle, Washington. Learn more.

Join us for Jazz in June! Tickets are now on sale.
Join us in Washington, DC on June 18th for a reception featuring jazz music from the Eric Byrd Trio! Our Jazz in June event will bring together new and seasoned childhood cancer advocates from 6:30 - 9:00pm at the Hamilton Loft near Metro Center. Tickets are now available, including complimentary admission for childhood cancer survivors.

A Victory for Our Kids: Childhood Cancer STAR Act Passes the Senate!

There was huge news on Capitol Hill last week when the U.S. Senate unanimously passed the most comprehensive childhood cancer legislation ever introduced!

We thank our champions in the Senate for leading the way toward this huge milestone for our community, especially the original sponsors of the Childhood Cancer STAR Act (S.292), Senators Jack Reed (RI), Shelley Moore Capito (WV), Chris Van Hollen (MD) and Johnny Isakson (GA).

We also thank each and every one of you who've reached out to your Members of Congress over the past few months - and years. Every email, tweet, phone call and meeting from the tireless advocates in our community played a part in this milestone victory for our kids. This has been a true collaborative effort with many organizations working together to get us here. We give special recognition to the coalitions of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer for their leadership.

Now, we turn our full attention to the U.S. House, where 362 members are already cosponsors -- over 80 percent! Our task now is to get the bill to committee and onto the House floor for a vote, so we can get it signed into law as quickly as possible. Please join us in this effort by writing to your Representative to ask for their support in getting this life-saving bill across the finish line. 

This bipartisan legislation is the result of many years of hard work from our Congressional champions, our community at large, and this organization. Its proposals are grounded in solid data, smart analysis, and a robust roundtable process that achieved community consensus on top policy priorities.

Thank you for helping us get this bill signed into law. 

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NIH Receives $3 Billion Increase in Bipartisan Spending Bill

The National Institutes of Health received a $3 billion funding increase as part of a $1.3 trillion appropriations deal passed by Congress last week. This $37 billion budget for NIH represents an 8.8% increase, the biggest percentage increase seen by the NIH in the past 15 years. 

This boost to medical research funding comes at a critical time, as advances in precision medicine hold the key to more children surviving and thriving after a cancer diagnosis than ever before. The All of Us precision medicine biobank - which includes a pediatric component - received a $60 million increase, to $290 million.

The 2,200 page omnibus spending bill also increases the Food and Drug Administration's budget to $5.1 billion (a $483 million increase) and includes $996 million in 21st Century Cures funding.

Read more: 

• Final 2018 Budget Bill Eases Biomedical Researchers' Policy Worries (Science)
• Funding Bill Gives $3 Billion Boost for NIH Medical Research (The Hill)

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Deadline Approaching to Apply for CCCA College Scholars Program

CCCA is pleased to offer an opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. Award recipients will receive a scholarship of $2,000 via our College Scholars Program beginning in fall 2018.

Applicants must be pediatric cancer survivors pursuing a Bachelor's degree or higher willing to commit to a childhood cancer advocacy project of their choosing. Project examples include a summer internship in our DC office or presentation at a health fair or Children's Cause event. 

The application deadline is April 15, 2018. Scholarship recipients will be notified by May 15. Please find full details and access to the application here.

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Congress on Spring Recess through April 10th

Members of Congress headed home for a scheduled two-week district work period through the first full week of April. If you're interested in meeting with your Congressional representatives about childhood cancer issues - or anything else - these district work periods are ideal times to find your Senators and Representative somewhere near you!

If you'd like to meet with your Member of Congress while they're home next week to share your childhood cancer story, here's a good place to start: CCCA's Guide to Congressional District Office Visits. You may also want to check Town Hall Project to see if there is a town hall taking place near you (there are many being scheduled for April 7th).

If you do interact with a Member of Congress about a childhood cancer issue, please take a moment to share your experience with us via this Meeting Report form. This information will remain confidential within Children's Cause staff and serves to help us improve our advocacy and refine our own work with these offices. Thank you for taking the time to share your story and our shared cause with lawmakers who have the power to create meaningful change for our kids.

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Upcoming DC Action Days: Alliance in April & OVAC in May

Children's Cause belongs to two coalitions holding lobby days on Capitol Hill this spring! Please consider whether you might be able to join us for one of them:

Alliance for Childhood Cancer Action Days, April 23 & 24 -- This annual two-day event brings parents, children, healthcare professionals and others together for new advocate training, issues training, and pre-arranged Capitol Hill visits with Congressional Representatives and their staff. We encourage families, patients and advocates to participate and join Children's Cause in this community event. Find out the schedule of events, hotel information, registration details and reports from previous Action Days on our website.

One Voice Against Cancer, May 14 & 15 -- OVAC brings together a wide range of cancer organizations (adult & pediatric) and will be focusing its lobby day efforts around federal funding for research and prevention. If you're interested in being a voice for childhood cancer at this year's event, click here to learn more and register. Take note that the early bird registration rate ends on April 1st! OVAC may still have scholarships available -- please reply to this email with your interest.

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Quick Links | Recommended Reading

• Genome Analysis Yields New Clues about Childhood Cancer: Two teams of researchers studying the genomes of more than 1,700 tumours, representing more than 20 different kinds of childhood cancer, are identifying new mutations driving tumor growth. These findings could lead to genetic tests that enable a child's treatment to be better tailored -- and more effective. This piece quotes our founder Susan Weiner, PhD: “We are playing catch-up with drugs in development in adults." (Nature, 2.28.18)
• Maryland Adopts Robot Tech for Kids Unable to Attend School: Maryland is trailblazing a path for students facing extended medical challenges like cancer to remain connected to their classrooms using state-of-the-art robot technology. Maryland will provide funding for all 24 of its school systems to receive up to four devices each. (WTOP, 3.7.18)

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Join us for Jazz in June! Tickets are now on sale.

Join us in Washington, DC on June 18th for a reception featuring jazz music from the Eric Byrd Trio! Our Jazz in June event will bring together new and seasoned childhood cancer advocates from 6:30 - 9:00pm at the Hamilton Loft near Metro Center. Tickets are now available, including complimentary admission for childhood cancer survivors.

Save the Date: Patient Focused Drug Development Meeting on 9/13/18

One of the more devastating late effects of childhood cancer treatment is a loss of hearing, which represents a serious unmet need in the pediatric cancer community. The Children's Cause, in partnership with other childhood cancer organizations including Mattie Miracle Cancer Foundation, the Children's Brain Tumor Foundation and Momcology, will host an FDA-approved Patient Focused Drug Development (PFDD) meeting on September 13, 2018 in Washington, DC.

The meeting will feature panel presentations by survivors, parents, and medical specialists, with an opportunity for public comment and input. This will be an opportunity for those affected by this condition to give the FDA the benefit of their experience as they consider treatments in development. If you're interested in attending or participating in this meeting, please fill out the form through this link so we can keep you posted on details and registration.

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Children's Cause Launches College Scholars Program

CCCA is pleased to offer an opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. Award recipients will receive a scholarship of $2,000 via our College Scholars Program beginning in fall 2018.

Applicants must be pediatric cancer survivors pursuing a Bachelor's degree or higher willing to commit to a childhood cancer advocacy project of their choosing. Project examples include a summer internship in our DC office or presentation at a health fair or Children's Cause event. 

The application deadline is April 15, 2018. Scholarship recipients will be notified by May 15. Please find full details and access to the application here.

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Policy Updates from Capitol Hill

Childhood Cancer STAR Act advances to Senate Committee
The Childhood Cancer STAR Act is on the schedule for tomorrow's Senate HELP Committee mark-up (February 28). If the HELP Committee approves the STAR Act, Chairman Lamar Alexander has pledged to move the bill quickly to the Senate for approval and send it to the House for consideration (H.R.820), where we currently have 357 cosponsors - over 80% of the full House! - signed on in support.

To be in the strongest position possible, we need more Senate support. Check here to see if your Senator is signed on and then take action! 

Be sure you're following Children's Cause on Facebook, Twitter and Instagram for the latest on the STAR Act.


Take Action to Secure NIH Funding
Through a budget agreement announced in February 2018, Congress has signaled its strong bipartisan support for the National Institutes of Health by promising an additional $2 billion for NIH over the next two years. As Congress negotiates the final details and heads towards an appropriations vote, we ask you to remind your Members of Congress of their demonstrated commitment to cancer research.

Help us get this promised funding over the finish line by writing to your Senators and Representative with our action alert.


Congress Renews CHIP for 10 Years
On February 8th, Congressional leaders announced that CHIP's six-year extension would become a full ten-year extension, as part of a broader budget agreement. This spending agreement funds CHIP through 2027, providing families with peace of mind for the foreseeable future. (Read more: Vox, 2.9.18)


Congress Passes RAISE Family Caregivers Act: In late January, President Trump signed into law the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act. This bipartisan law aims to create a national strategy for supporting the 40 million family caregivers in the U.S. An advisory body will bring together stakeholders to make recommendations within a year for meeting the needs of caregivers. (Read more: Forbes, 1.24.18)

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Registration Now Open for Childhood Cancer Action Days: April 23-24

You're invited to join the Children's Cause and the Alliance for Childhood Cancer for this year's Childhood Cancer Action Days in Washington, DC on April 23-24.

The annual two-day event brings parents, children, healthcare professionals and others together for new advocate training, issues training, and pre-arranged Capitol Hill visits with Congressional Representatives and their staff.

We encourage families, patients and advocates to participate and join Children's Cause in this community event. Find out the schedule of events, hotel information, registration details and reports from previous Action Days on our website.

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CCCA's Founder Presents on Public Private Partnership at International Meeting

Our president and founder Susan L. Weiner, PhD, presented this month at the ACCELERATE pediatric oncology conference in Brussels. Dr. Weiner discussed the critical need for a public private partnership (PPP) to develop drugs for children when there is no associated adult development program.

Dr. Weiner's presentation continues a Children's Cause effort to identify novel business and collaborative arrangements to address this development gap. The PPP has captured the imagination of several private institutions, including the Biden Cancer Initiative. We look forward to keeping the childhood cancer community updated as this work continues to progress. 

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Quick Links | Recommended Reading

• CCCA Webinar Highlights Online Resources for Families: Our 2018 Webinar Series kicked off with an hour-long tour through the maze of support services and resources available to families of kids with cancer and survivors. "Navigating the Childhood Cancer Journey" delved into some of the best tools available to aid in a child's journey from diagnosis to survivorship, including social workers, the Patient Advocate Foundation, and the Hope Portal. More highlights and the full recording are available here.

• FDA Public Workshop -- CDER and You: The Food and Drug Administration Center for Drug Evaluation and Research (CDER) is conducting its third annual public workshop for patient advocacy groups on April 3rd. The workshop will include educational presentations about the drug approval process and safety issues. Interested patient advocates can register by March 20th for the in-person meeting in Silver Spring, MD, or to attend via webcast. Learn more.

• Medicaid Transportation Program Facing State-level Cuts: Families who rely on the Medicaid program known as NEMT - non-emergency medical transportation - to get to and from medical appointments are concerned by an increasing number of states receiving federal waivers to allow them to cut the service. So far, Iowa, Indiana and Kentucky have received the waiver and Massachusetts has a waiver pending. (Read more: NPR, 1.27.18)

• Friends of Cancer Research Meeting on Molecularly Targeted Therapies:CCCA's founder Susan L. Weiner, PhD, was part of a panel discussion on "Considerations for the Application of a Molecular Target List to Cancer Drug Development for Pediatrics" at this half-day meeting on February 20th. Meeting slides are available here.

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Join us in Washington on June 18th for a reception featuring jazz music from the Eric Byrd Trio! Our Jazz in June event will bring together new and seasoned childhood cancer advocates from 6:30-9:00pm at the Hamilton Loft, near Metro Center. Tickets are now available, including free tickets for childhood cancer survivors!