CAC2 Childhood Cancer Community News Digest (April 1-7)

April 8, 2024 Community News, News Digest

Assorted News from the Last Week:

FDA announced its Pediatric Oncology Subcommittee of the Oncologic Drugs Advisory Committee will meet virtually on 22 May to discuss provisions in the 2017 FDA Reauthorization Act that require sponsors of adult cancer drug premarket applications to also submit data that could be used to inform the use of the drug in children. The subcommittee is expected to meet to discuss implementing the law and how it could affect pediatric cancer drug development.

In honor of National AYA Cancer Awareness Week, please note the recent announcement from the White House about patient data portability: the Biden-Harris Administration has kick-started the adoption of United States Core Data for Interoperability Plus Cancer (USCDI+ Cancer), a recommended minimum set of key cancer-related data elements to be included in a person’s electronic health record. This effort will allow health care providers to share health information seamlessly, advance equity in treatment, and improve care and outcomes for people facing cancer across the country, especially in rural and underserved areas. Standardizing data across electronic health records also opens new possibilities for faster research results and more effective public health interventions.

Childhood cancer survivors appeared significantly more likely than the general public to die after a major cardiovascular event.

The Department of Health and Human Services (HHS) published a white paper detailing policy changes that could help prevent drug shortages which have become an increasingly bigger concern especially since the COVID-19 pandemic highlighted vulnerabilities in the US drug supply chain.

The investigational agent LSTA1 (CEND-1) received a rare pediatric disease designation (RPDD) from the FDA for the potential treatment of pediatric or adult patients with osteosarcoma, according to an announcement from Lisata Therapeutics, Inc.

Revolutionary advancements in oncology have transformed lives, but the clinical trials ecosystem encounters challenges, including restricted access to innovative therapies and a lack of diversity in participant representation. Our approach to clinical trials needs democratized, globally accessible oncology trials.  This requires collaboration among researchers, clinicians, patients, and policymakers to shift from converting complex, exclusive trials into a dynamic, inclusive force against cancer.

The Indira Gandhi Institute of Child Health (IGICH) established the first Paediatric Pain and Palliative care program in Karnataka, demonstrating its commitment to the utmost care and respect for the most vulnerable children, aiming to eliminate unnecessary pain and suffering in children from infancy to adulthood.

April is National Cancer Prevention and Early Detection Month, a time to bring awareness to lifesaving cancer screenings, healthy life habits, and the work being done to reduce American’s exposure to environmental toxins.

Upcoming Webinars, Online Opportunities, and Meetings:

Join Ryan’s Case for Smiles (RCFS) and Flyers Charities for JustSibs Live, a unique opportunity for teenage siblings of children with cancer on April 13, 2024, 3:00 pm – 8:00 pm at the Wells Fargo Center, 3601 S. Broad St., Philadelphia, PA 19148.  For information and to register.

Healing Hearts was created by grieving parents who needed a haven of love and comfort along with the hope of healing. Together, we support each other in creating a life worth living, for and with our children. Healing Hearts is for Osteosarcoma Bereaved families only and meets once a month on Wednesdays from 7- 8PM ET on April 24.  For information and to register.

Join BJ Miller, Mettle Health founder, palliative care and hospice physician and author, and Allison J. Applebaum, clinical psychologist and author for an interactive discussion on all things caregiving on April from 1:00 to 9:00 ET.  For information and to register.

The 21st International Symposium on Pediatric Neuro-Oncology (ISPNO 2024) from June 29 – July 2, 2024, and the Annual Meeting of the Brain Tumor Group of SIOP Europe (SIOPE-BTG) from June 28-29, 2024, which will take place in Philadelphia, PA.  For information and to register.

56th Congress of the International Society of Paediatric Oncology (SIOP 2024), which will take place in Honolulu, Hawaii, USA | October 17-20, 2024. Registration is open and anyone who registers before July 17, 2024 can take advantage of the discounted rates.

Past Recordings:

CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts). Access recent podcasts with CAC2 Members (and visit Help and Hope Happen Here for interviews with other CAC2 members and thought leaders from around the community):

Take Action:

The US House Energy and Commerce Committee’s Health Subcommittee recently held a hearing on H.R. 4758/S. 2372 Accelerating Kids’ Access to Care Act (AKACA). Reach out to Republicans on the House Energy and Commerce Committee and the Senate Finance Committee and urge them to cosponsor the bill. If you have any questions, please contact CAC2 Member Matt Marks, Director of Federal Affairs with The Leukemia & Lymphoma Society, at .

CAC2 Member Pediatric Brain Tumor Foundation sponsored a Congressional Town Hall about the Data for Pediatric Brain Cancer Act (H.R. 6288), introduced recently in the House of Representatives by Congressmen Ami Bera, M.D. (D-CA) and Mike Kelly (R-PA). If you missed any part of the town hall or would like to spread the word about the Data for Pediatric Brain Cancer Act, the recording of it is available here, where you’ll also find a copy of the legislation overview. If you have any questions, please contact CAC2 Member Mike Henry, Director of Advocacy with Pediatric Brain Tumor Foundation, at .

The US House passed the Gabriella Miller Kids First Research Act 2.0, which will reauthorize federal funding for the National Institute of Health’s (NIH) Gabriella Miller Kids First Pediatric Research Program (Kids First).  The original law has supported lifesaving pediatric research of treatments and cures for childhood cancer over the past nine years.  Contact your Senator and ask for their support of Senate version of Gabriella Miller 2.0 (S. 1624). Click here to check if your Senator is already a cosponsor.  Find your Senators here.

You are invited to participate in a study titled “Power of Human Connections” to improve mental health support using a peer-to-peer support mobile application for patient caregivers of young children with cancer. If you are the primary caregiver for a child between 0 to 14 years of age currently undergoing treatment for cancer; have access to a smartphone capable of running iOS or Android software; are comfortable using applications, technology, and digital devices, and are willing to answer the study questionnaires, have friends and family who are comfortable using applications, technology, and digital devices, and are willing to interact with technology on a smartphone, have the ability to read and understand English fluently, and have the ability to read and consent to the study and study procedures please access the informed consent and link to get started HERE.

The 2024 Evan Lindberg & Erik Ludwinski College Scholarship Program is open to high school seniors who are survivors of a high-risk cancer or in treatment for a high-risk malignancy.  Students must be accepted into a 4-year undergraduate institution and demonstrate a need for financial assistance.  For information and to apply.

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