January Bulletin: A Busy New Year

PRESIDENT ANNOUNCES 'MOONSHOT' PURSUIT OF CANCER CURE
CHILDREN'S CAUSE URGES PRIORITIZATION OF CHILDREN

In his final State of the Union address, President Obama announced a new national effort to cure cancer, to be led by Vice President Joe Biden. We thank President Obama and Vice President Biden for their leadership and their commitment to accelerating progress in the fight against cancer. 
 
The President's call to action is timely, given the rapid advances in cancer medicine. We urge the Administration to put children with cancer at the forefront of this movement. As this initiative progresses, the Children's Cause will seek every opportunity to make the unique needs and perspectives of children with cancer heard in this important national dialogue.
 
President Obama established a White House Cancer Moonshot Task Force this week, led by the Vice President and including representatives from the president's cabinet, the White House, the FDA, NCI, NIH and the National Science Foundation. The Task Force will hold its first meeting Monday.
 
Share your story with the White House to ensure the voices of our children are heard.

 

CHILDREN'S CAUSE ANNOUNCES NEW CEO: GEORGE DAHLMAN

George Dahlman, a seasoned nonprofit executive with extensive experience in patient and cancer advocacy, has been appointed to the position of Chief Executive Officer of the Children's Cause for Cancer Advocacy, effective February 1.
 
"Mr. Dahlman has dedicated his career to representing the needs and perspectives of unique patient populations, making him a strong asset to the childhood cancer community," said Susan Weiner, PhD, president and founder. "With George's steady leadership at the helm, Children's Cause will continue aggressively advocating for children with cancer and their families. On behalf of the Board of Directors and myself, I welcome George to the Children's Cause family and express our enthusiasm for exploring new directions and ideas in pursuit of a better future for our children."
 
As CEO, Dahlman will oversee the organization's policy and programmatic goals, manage day-to-day operations, and implement a strategic vision to further the Children's Cause mission of achieving a day when every child with cancer can live a long and healthy life.
 
Learn more from our full press release.

 

NIH RECEIVES CRITICAL FUNDING INCREASE

Congress passed a $1.1 trillion spending bill (H.R.2029) in late December to fund the government through the end of the current fiscal year (9.30.16). The bipartisan bill contained several elements of interest to the childhood cancer community:
 
- NIH funding for this fiscal year was increased to $32 billion, a much-needed boost after a dozen years of flat funding and 2013’s sequestration cuts. The National Cancer Institute will receive $5.2 billion of that allocation, amounting to a 5.3 percent increase.
 
- The spending bill included $12.6 million in funds for the Gabriella Miller Kids First Research Act, tied to pediatric research at the NIH. The Kids First bill was signed into law in 2014, re-directing $126 million over 10 years from a taxpayer presidential campaign fund to pediatric disease research.
 
- The appropriations bill also reauthorized the Creating Hope Act, the priority review voucher program signed into law in 2011.
 
MORE NCI NEWS: 
 
New information suggests enrollment is expected to begin later this year for the NCI's Pediatric MATCH clinical trial. Pediatric MATCH aims to test molecularly targeted therapies on children with solid tumors who have exhausted other standard treatment options. Researchers hope to enroll 300 pediatric patients annually to screen for genetic alterations and, if possible, match those abnormalities with a molecularly targeted treatment. Pediatric MATCH will differ from its larger adult counterpart (NCI-MATCH) in several significant ways, including the sequencing of blood samples (in addition to tumor tissue) and offering enhanced screening to family members when underlying germline mutations are found in a child. (GenomeWeb, 1.26.16)

 

LEGISLATIVE UPDATES

Childhood Cancer STAR Act:  The Childhood Cancer Survivorship, Treatment, Access & Research (STAR) Act continues to gain support from both parties in both chambers of Congress. The bill now has over 150 House and Senate cosponsors! Children's Cause was proud to join with other members of the Alliance for Childhood Cancer on Capitol Hill this week to seek additional support for this life-saving legislation.
 
Please take a moment to check the current House list and Senate list to see if your Congressmen are signed on. If not, send a message to get them on board!
 
DIPG Awareness Week Resolution: A resolution (H.Res.586) was introduced this month to establish a national "DIPG Awareness Week" to bring attention to Diffuse Intrinsic Pontine Glioma, a brain tumor typically deemed terminal upon diagnosis. See the press release from the bill's original sponsor, Congressman Steve Knight of California, for more information.


RESEARCH ROUND-UP

NEW PSYCHOSOCIAL RECOMMENDATIONS: Publication of the first national peer-reviewed standards for psychosocial care marks a major step toward improving and standardizing the psychological and emotional care of children with cancer and their families. The standards recommend that children and their families receive regular psychological assessments, early education about palliative care, financial guidance, school support and more. (Pediatric Blood and Cancer, December 2015)
 
See also: "How one couple's loss led to a push for psychosocial care for kids with cancer" (Washington Post, 12.29.15)
 
COST OF CARE: A new survey of childhood cancer survivors reveals many survivors foregoing needed healthcare for financial reasons. Cost-related barriers to treatment were higher for survivors who are female, uninsured, and living with a chronic health condition. (Cancer Survivorship Symposium, Abstract 20, Presented 1.15.16)
 
RETINOBLASTOMA: New research out of the Childhood Cancer Survivor Study found that 22.5 percent of retinoblastoma survivors have impaired vision but it generally does not impact mental or emotional health in adulthood. However, survivors with blindness in both eyes are at increased risk of negative psychosocial outcomes. A second study also discovered mixed results: most retinoblastoma survivors rate their health as good to excellent in adulthood, but those who had tumors in both eyes are at increased risk of chronic conditions and second cancers. (Cancer: Impact of Vision Loss and Results of the Retinoblastoma Survivor Study, 1.11.16)
 
LATE MORTALITY DECLINE: Children treated with cancer in the 1990s have experienced better health as adults and a lower risk of late mortality compared to those who received treatment in the 1970s and 80s. Researchers attribute this decline in late mortality to improved treatment regimens during this two decade period.  (The New England Journal of Medicine, 1.13.16)