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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Member Blog–When the National Drug Shortage Becomes Personal

By CAC2 Individual Member Jennifer Flowers Rhabdomyosarcoma became a common word in my family when I was three years old. By the time of diagnosis, the cancer had metastasized from the middle ear into the mastoid and eustachian tube. The University of Michigan’s C.S. Mott Children’s Hospital oncology team told my parents there was less than a three percent chance for me to live out the year. There was no definitive treatment protocol to defeat this rare form of cancer, and the survival rate was extremely low. Over the next two and a half years, I underwent surgeries, full head […]

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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

Guest Blog–Conversations on Cancer – Pediatric Cancers: Navigating the Challenges Together

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 on November 19, 2024, 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). Because of the rarity of cancers arising in childhood and adolescence and high unmet medical need, pediatric oncology drug development is inherently complex. As a result, pediatric oncology clinician investigators are faced with challenges related to [...] Read more