All posts by CAC2

Accelerating Kids’ Access to Care Act (AKACA) Gains Traction in Congress and Needs Your Help!

By CAC2 Member Matt Marks (Leukemia & Lymphoma Society) State borders shouldn’t be barriers to treatment for children with cancer or other complex illnesses. Yet all too often, they cause challenges—or even treatment delays—for children and their families who rely on Medicaid or CHIP for their health insurance. That’s why I encourage our community to champion the bipartisan Accelerating Kids’ Access to Care Act (AKACA).  This bill would reduce the paperwork required of doctors treating children from out-of-state, so that children can receive the care they need faster and with fewer delays. Recently, the U.S. House of Representatives’ Energy and Commerce […]

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Perhaps one day, we can all say hello to the cure. ~The Meo Family

By CAC2 Member Matt Meo (Hello Cure) Our family is yet another childhood cancer family. Our son, Landon Meo, was diagnosed with medulloblastoma on March 25th, 2021 and passed away on December 17, 2022 at the age of 10 and 1/2. Landon always said his wish is that “no kid EVER” have cancer. Like many parents, we found ourselves asking, “What can we do to help?” We frequently saw parents share their child’s story on Facebook and Instagram pages. Many had thousands of followers. Even the ones with smaller followings had a circle of people who genuinely cared about them.  […]

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CAC2 Childhood Cancer Community News Digest (May 20-26)

Assorted News from the Last Week: The FDA Pediatric ODAC met to "discuss perspectives on the impact of FDARA on the field of pediatric oncology, considerations related to implementation of FDARA for new molecularly targeted drugs and biological products, and the role of proof-of-concept studies using relevant pediatric preclinical models." There was also a discussion of the role of international collaboration and how coordinated approaches to the design and conduct of molecularly targeted pediatric cancer investigations can be best achieved in light of RACE Act regulations. Click here to view all the meeting information and links to key documents and [...] Read more

Community News–Health Subcommittee Markup in the House Energy & Commerce Committee Advances Legislation for Children with Cancer

The Energy and Commerce Committee advanced proposals earlier this month that will extend Americans’ access to telehealth services, strengthen and preserve Medicaid, and encourage innovation to help children with rare diseases. In a Subcommittee markup, the Health Subcommittee forwarded 21 pieces of legislation to the Full Committee for consideration.  Several of them are important to the childhood cancer community: Creating Hope Reauthorization Act (HR 7384). Pharmaceutical companies developing treatments for rare diseases that mainly affect children are eligible for rare pediatric disease priority review vouchers supporting their work. Children represent about half of all people living with a rare condition. […]

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CAC2 Childhood Cancer Community News Digest (May 13-19)

Assorted News from the Last Week: St. Jude survivorship portal and its ability to facilitate breakthroughs in pediatric cancer survivorship research were published recently in Cancer Discovery. The portal integrates data involving whole genomic sequencing, treatment exposure and outcomes — creating an unprecedented research system that houses 400 million genetic variants from over 7,700 childhood cancer survivors. In an effort to raise awareness about pediatric brain cancer, encourage research on diffuse intrinsic pontine glioma (DIPG) tumors and other pediatric cancers, and honor patients and families who have faced this disease, the U.S. Senate passed a bipartisan resolution (S.Res. 691) designating May [...] Read more

CAC2 Childhood Cancer Community News Digest (May 6-12)

Assorted News from the Last Week: To understand how CNS tumors impact the AYA population, NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors), the Central Brain Tumor Registry of the United States (CBTRUS), and the American Brain Tumor Association (ABTA) have partnered on a new statistical report that explores statistical trends in AYAs with primary CNS tumors in the United States between 2016 and 2020. (NCI) Among adults previously treated for a childhood cancer who attained full-time employment 25 years following successful treatment, nearly 30% to 40% either died, became unemployed, or moved to part-time employment or left the labor force [...] Read more

CAC2 Childhood Cancer Community News Digest (April 29-May 5)

Assorted News from the Last Week: Brain cancer in children is notoriously hard to treat – a new mRNA cancer vaccine triggers an attack from within. In an analysis from the Children’s Oncology Group phase III AALL1131 study reported in the Journal of Clinical Oncology, Alexander et al found that exposure to propofol was associated with an increased risk of impairment in reaction time/processing speed at 1 year after treatment in children with high-risk B-cell acute lymphoblastic leukemia (B-ALL). While overall cancer risk was no different for children born after fertility treatments compared with those naturally conceived, frozen or fresh [...] Read more

CAC2 Childhood Cancer Community News Digest (April 22-28)

Assorted News from the Last Week: Congratulations to CAC2 Supporting Organization Day One Biopharmaceuticals.  The FDA has granted accelerated approval to tovorafenib (Ojemda) for the treatment of pediatric patients 6 months of age and older with relapsed or refractory low-grade glioma harboring a BRAF fusion or rearrangement, or a BRAF V600 mutation and marks the first systemic therapy indicated for pediatric patients with low-grade glioma harboring BRAF rearrangements, including fusions.  There are a ton of articles about this approval.  This OncLive piece was the first in. The FDA approved lutetium Lu 177 dotatate for the treatment of pediatric patients aged 12 [...] Read more

CAC2 Childhood Cancer Community News Digest (April 15-21)

Assorted News from the Last Week: To achieve successful socioeconomic reintegration in the long term, it is crucial to implement a childhood cancer survivorship program that addresses the unique needs of individuals based on their disease and cultural background throughout their entire lives. Data sharing platforms for precision care can revolutionize the way we treat patients and advance treatments and cures for pediatric brain cancer. Following a progressive expansion, the ZERO Childhood Cancer program is now available to all children with cancer in Australia. This means that every child, regardless of their cancer type or risk profile, will now have [...] Read more

Embracing Resilience: Navigating Childhood Cancer Advocacy in Nigeria

By CAC2 Student Member Joshua Omale As I reflect on my journey as a childhood cancer advocate here in Nigeria, I’m continually reminded of the profound resilience ingrained within the fabric of our communities. It’s a resilience born not just of strength, but of necessity, as we confront the daunting challenges that childhood cancer presents. In the heart of Nigeria, where resources are often scarce and access to healthcare is a privilege rather than a right, our advocacy takes on a deeper significance. It becomes a lifeline for families grappling with the emotional and financial burdens of a cancer diagnosis, […]

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