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

Assorted News from the Last Week: Pope Francis tells pediatric cancer patients they are ‘witnesses of hope.’ Unraveling the relationship between stress exposure and childhood anxiety: Considering accumulation, impact, and type in the first five years of life. New symptom reporting tool improves quality of life for children with cancer. Draft guidance from the FDA and Office for Human Research Protections offers draft guidance for incorporating tissue biopsies into clinical trials. Bone mineral density deficits prevalent among childhood cancer survivors, but modifiable risk factors suggest there are targets for intervention. Childhood cancer genome study reveals hidden variants. Transplant of frozen [...] Read more

CAC2 Childhood Cancer Community News Digest (December 30-January 5)

Assorted News from the Last Week: GLO-BNHL opens first sites of a multi-country platform trial that will offer multiple new treatments and a better chance of survival for pediatric B-cell Non-Hodgkin lymphoma patients. Read more about this trial from a personal point of view! The finding that children from low-income households are more likely to experience cancer relapse and face lower survival rates compared to their more privileged peers, despite receiving treatment on highly standardized clinical trials at top academic centers, prompts formation of the IGNITE Consortium. In a small clinical trial, a CAR T-cell therapy—a type of immunotherapy that [...] Read more

CAC2 Childhood Cancer Community News Digest (December 23-29)

Assorted News from the Last Week: Spending package extends medicare telehealth flexibilities for three months and Gabriella Miller Kids First 2.0 reauthorization passes in standalone bill.  Other childhood cancer priorities left behind. FDA approves Remestemcel-L for pediatric steroid-refractory acute graft-vs-host disease. Neurocognitive battery feasible in 3-year-olds during leukemia treatment. Saro H. Armenian, DO, MPH, discussed the unique challenges facing children diagnosed with cancer and their families and what lies on the horizon. Upcoming Webinars, Online Opportunities, and Meetings: ACCELERATE Multi-stakeholder Conference "A Decade of Impact – and Beyond" on February 6th & 7th in Brussels Belgium. In-person and virtual registration [...] Read more

CAC2 Childhood Cancer Community News Digest (December 16-22)

Assorted News from the Last Week: Special Advocacy Call to Action:  CAC2 Supporting Organization LLS is spearheading an effort and inviting all in the community to call on Congress to make children with cancer its number one priority when it reconvenes in January.  Read about it here. FDA approves Remestemcel-L for pediatric steroid-refractory acute Graft-vs-Host disease. Alarming mental health challenges among young cancer survivors, especially males, demand action. Giving pediatric cancer survivors hope in Nigeria. Breakthrough study set to change how osteosarcomas are diagnosed and treated. Experimental drug that summons 'warriors of the immune system' shows early promise against non-Hodgkin [...] Read more

SPECIAL YEAR-END ADVOCACY ALERT

There were five pieces of legislation that had gained a lot of support across both the House and the Senate over the past two years thanks to the collective efforts of the childhood cancer community and our legislative champions:   ACCELERATING ACCESS TO CARE ACT: Streamlines out-of-state treatment for children on Medicaid. GABRIELLA MILLER KIDS FIRST RESEARCH ACT 2.0: Extends research funding authorization for another seven years. GIVE KIDS A CHANCE ACT: Supports pediatric studies on new cancer drug combinations. INNOVATIONS IN PEDIATRIC DRUGS ACT: Imposes financial penalties on drug companies that fail to complete required pediatric studies. PRIORITY REVIEW […]

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CAC2 Childhood Cancer Community News Digest (December 9-15)

Assorted News from the Last Week: The simple act of asking young patients about their symptoms regularly during cancer treatment can help them get more supportive care and reduce distressing side effects, according to the results of two new clinical trials. A simple change to the chemotherapy regimen for people with Hodgkin lymphoma could reduce the long-term health impacts that can result from treatment. Indian researchers are working on developing less expensive treatment for children's blood cancers. Frequent copy number gain of MCL1 is a therapeutic target for osteosarcoma. The survival rate for children high risk neuroblastoma could one day [...] Read more

CAC2 Childhood Cancer Community News Digest (December 2-8)

Assorted News from the Last Week: CAC2 Individual Member Jennifer Flowers writes compellingly about "When the National Drug Shortage Becomes Personal" for her. Published in JAMA: "Stakeholder Perspectives on Randomized Clinical Trials for Children With Poor-Prognosis Cancers." Many CAC2 Members contributed to this of how and when randomized clinical trials (RCTs) should be deployed to best meet the needs of all involved. Reported at the ASH meeting this week: An investigational CAR T-cell therapy induced responses in nearly every single patient with childhood B-cell acute lymphoblastic leukemia (B-ALL). Children with newly diagnosed B-cell acute lymphoblastic leukemia (B-ALL) lived significantly longer [...] Read more

CAC2 Advocacy Alert: End-of-Year Call to Action

During our October federal advocacy drop-in session, we learned about several pieces of legislation that had a good chance to pass before the end of the year and also alerted everyone that “advocates may be called on to make a final push between now and the end of the year.”  That time has come! During this week of action, we need your help: Accelerating Kids’ Access to Care Act—230 organizations (about a third from CAC2) have signed a letter urging lawmakers to pass the bill in the end-of-year legislative package (here’s a link to that letter). Beginning today, December 9th […]

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CAC2 Childhood Cancer Community News Digest (November 26-December 1)

Assorted News from the Last Week: Last week the FDA reported that it is investigating reports of blood cancers -- including life-threatening cases of myelodysplastic syndrome and acute myeloid leukemia -- in patients with early, active cerebral adrenoleukodystrophy (CALD) who were treated with elivaldogene autotemcel (eli-cel; Skysona). Cervical cancer deaths have plunged dramatically among women under age 25, and researchers at MUSC Hollings Cancer Center believe this is likely due to HPV vaccination. An international research team including researchers from Augsburg University Medicine has made significant progress in the risk assessment and treatment of extracranial malign rhabdoid tumors. Giselle Saulnier [...] Read more

CAC2 Childhood Cancer Community News Digest (November 18-25)

Assorted News from the Last Week: In conjunction with the European Medicines Agency (EMA), the FDA Oncology Center of Excellence (OCE) held a one-hour Conversations on Cancer public panel discussion to examine an array of challenging decisions faced by members of the pediatric oncology community. The panel discussion featured current CAC2 Board Member Nicole Scobie (Zoe4Life) and past CAC2 Board Member Donna Ludwinski (Solving Kids’ Cancer). Regular symptom screening in patients with pediatric cancer can lead to a reduced symptom burden, according to a pair of studies published in JAMA Pediatrics and JAMA Suicide rates for young male cancer survivors [...] Read more

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