September Bulletin: Awareness, Advocacy, Action

Chemo-Induced Hearing Loss Meeting Spotlights Critical Quality of Life Issue


We were proud to co-host an Externally-Led Patient Focused Drug Development (EL-PFDD) workshop on chemotherapy-induced hearing loss in pediatrics, in partnership with Momcology, Mattie Miracle Cancer Foundation, and the Children’s Brain Tumor Foundation. This half-day meeting featured a series of facilitated panel and audience discussions focused on providing the FDA with patient perspectives on a survivorship issue with a significant unmet need and quality-of-life burden. 

This EL-PFDD was an incredibly empowering day for childhood cancer survivors and family members, giving them a long-deserved spotlight to share their very personal stories about the severe impact that hearing loss has had on their lives and their families. Approximately 200 stakeholders participated, either in person or via webcast, and we heard over and over again about the impactful and emotional power of this event.

You can find the full webcast recording here and photos from the workshop here. In the coming weeks and months, we’ll share more outcomes from this meeting, including a formal report.

Appropriations Bill Includes Childhood Cancer Priorities, including GAO Report Championed by CCCA

At the conclusion of the Childhood Cancer Summit earlier this month (more on that below), Representative Michael McCaul shared breaking news that the House and Senate had reached a conference agreement to fully fund the STAR Act in FY2019, a huge win for the community and a testament to the strength of our combined advocacy efforts.

He was referring to a "minibus" appropriations bill, passed by both chambers, that provides funding for the Labor, Education and Health and Human Services departments as well as several other agencies. The bill awaits signature by the President. 

The measure contains several priorities of the Children's Cause for Cancer Advocacy:

  • Funding for the National Institutes of Health at $39 billion -- an increase of $2 billion, which will include cancer research;

  • Full funding for the STAR Act, which was passed with unanimous bipartisan support this summer; and

  • A directive to conduct a GAO report, originally contained in the STAR Act but deleted in the final hours of STAR consideration. The GAO report would evaluate the barriers to obtaining medical care for survivors of childhood cancer and provide recommendations to improve access for these individuals, with a focus on palliative and psychosocial care.

The Children's Cause worked tirelessly on the above items with a particular focus on the GAO report, and we thank Congress for including it in this spending bill.

NIH Director Keynotes Childhood Cancer Summit


The Congressional Childhood Cancer Caucus's 9th Annual Summit on Capitol Hill brought the community together for an opportunity to hear from Representatives Michael McCaul and Mike Kelly, as well as Dr. Ned Sharpless, Director of the National Cancer Institute.

Dr. Sharpless shared updates on the Cancer Moonshot, immunotherapy breakthroughs, and developments in big data. He emphasized the huge achievement of a $2 billion boost in NIH funding in FY2019, calling it a "testament to the broad bipartisan support for cancer research but it's also a real testament to [the advocacy community.]"

Director Sharpless also put a strong emphasis on the importance of basic science, which is defined by the NIH as 'research that supports a broad understanding of human behavior and biology.' Dr. Sharpless remarked that NIH has to "double down and continue to invest in basic science. That’s where the really good ideas come from. They start in the lab.”

On the STAR Act, Dr. Sharpless thanked childhood cancer advocates for this "magnificent achievement," calling it "a real tool tor the National Cancer Institute. It gives us a set of goals and powers that make our ability to treat and study and work on and actually influence the outcome of childhood cancer much greater." On implementation, he said there will now be new pediatric oncology voices represented on relevant boards and there will be a new emphasis on biorepositories and banking samples.

CureFest and More


We joined with families and organizations from around the country for CureFest, an annual event that Children's Cause is proud to help support as a bronze sponsor. If you missed CureFest, there was fantastic live coverage of the many events broadcast on their Facebook page. We encourage you to check out the photos and videos -- and make plans to join next year. Organizers have already announced that the dates will be September 20-22, 2019.

In other notable news, we congratulate our colleagues who receivedRareVoice Awards at the 7th annual celebrate on September 12th. We also thank and recognize Hyundai Hope on Wheels for their 20th year of supporting childhood cancer.

See more news and photos from this September on our blog.

Quick Links | Recommended Reading

Our founder Susan L. Weiner participated in a United Nations General Assembly meeting this week on tackling childhood cancer survival disparities in low- and middle-income countries: 

Final Opportunity to Win $100 with Our 2018 Family Needs Survey!

In partnership with the Patient Advocate Foundation, we're conducting a 5-10 minute online survey of childhood cancer families, patients and survivors to better understand healthcare barriers facing families like yours. Your input strengthens the data we take to policymakers in Washington and state capitols as we fight for improved access to quality, affordable care.

Your participation is completely voluntary, and your individual responses will be kept confidential. As a thank you for your time, you'll automatically be entered into a weekly $100 Amazon gift card drawing!

Jessica Kean