WASHINGTON, DC – Congress can’t seem to agree on much these days, but today the
U.S. House of Representatives came together to pass a bill authored by U.S.
Senator Jack Reed (D-RI) that will advance pediatric cancer research and
improve outcomes for kids with cancer.
The Childhood Cancer Survivorship, Treatment,
Access, and Research (STAR) Act (S. 292) will expand funding to research
childhood cancers, explore effective treatment options, identify and track
childhood-cancer rates, and enhance the quality of life for childhood cancer
survivors. It authorizes key research initiatives, such as
biorepositories at the National Institutes of Health (NIH) and surveillance at
the U.S. Centers for Disease Control and Prevention (CDC), while focusing on
some of the least-studied and understood childhood cancers.
The bill, which was previously approved by the
full U.S. Senate on March 22, 2018, now heads to the President’s desk to be
signed into law.
“We’ve been on this journey together with
countless families who’ve battled cancer and are hoping to help others facing
similar challenges. It has taken years of hard work, and now, thanks to
their efforts, this bill will be a real help to kids and families facing
cancer. The STAR Act will advance cancer research, help raise survivorship
rates, and make cutting-edge treatments more readily available. It will
increase the amount of data doctors can share and provide new strategies to
help survivors overcome the odds,” said Senator Reed. “We’ve got
to make sure childhood cancer research has the funding it deserves. And
it is my hope that these efforts will lead to life-saving treatments, improved
outcomes for children, and one day, cures.”
The National Brain Tumor Society called Reed’s
bill, which he first introduced in 2015, “the most comprehensive childhood
cancer legislation ever taken up by Congress.”
Getting the bill passed was a bipartisan,
bicameral effort. The Childhood Cancer STAR Act received key backing in
the U.S. Senate from Senators Shelley Moore Capito (R-WV), Chris Van Hollen
(D-MD), and Johnny Isakson (R-GA). And it was championed by U.S.
Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA),
and G.K. Butterfield (D-NC) in the House.
Reed also gave special credit to the army of
relentless childhood cancer research advocates across the country who supported
the bill, including individuals like Rhode Island’s own Rebekah Ham, and her
daughter, Grace Carey, a cancer survivor who was diagnosed with medulloblastoma
at age five.
Speaking at an event yesterday at Brown
University, Rebekah Ham stated: “We love all that the STAR Act stands
for. That’s why Grace and I traveled to DC in April with the 46 Mommas, a
St. Baldrick’s Foundation campaign. The 46 Mommas are a team of moms, all
of whom have had kids diagnosed with cancer. We come together annually
from around the U.S. to advocate and raise money for childhood cancer research.
Many of the 70 mommas who attended are bereaved. They’ve had to say
goodbye to their children because the research and treatments we have today are
not enough. These mommas were in DC to honor their children’s memories
and to demand better for the kids who are diagnosed today, tomorrow, the next
day, and the day after that.”
Also participating in yesterday’s Childhood
Cancer STAR Act discussion were members of the Brown University Oncology
Research Group, a division of the Alpert Medical School, which is a national
leader on cancer research.
“As a physician, one of the hardest things is
when you diagnose a patient with a disease and there's no treatment for it, or
you wish there was a better, less toxic treatment,” stated Jack A. Elias,
MD, senior vice president for health affairs and dean of medicine and biological
sciences at Brown University. “While science has made great advances
and we now have miraculous treatments for many diseases, the sad part is the
majority of advances have been made in adults, not children. We have to be
conscious of the need to study diseases in children, to develop better
therapies for them, and to deal with the consequences of those treatments. This
legislation is designed to address these issues, and I'm grateful to the
patient advocates and to Sen. Reed for getting it to this point.”
Today, cancer is the leading cause of death by
disease past infancy among children in the United States, according to NIH’s
National Cancer Institute (NCI). And according to the American Childhood
Cancer Organization (ACCO), an estimated 15,780 children between the ages of
birth and 19 years of age are diagnosed with cancer each year. ACCO also
estimates that about 1 in 285 American children will be diagnosed with cancer
before their 20th birthday.
Summary: The Childhood Cancer Survivorship,
Treatment, Access, and Research (STAR) Act
The Childhood Cancer STAR Act would expand
opportunities for childhood cancer research, improve efforts to identify and
track childhood cancer incidences, and enhance the quality of life for childhood
Expanding Opportunities for Childhood Cancer
Research: Due to the relatively small population
of children with cancer and the geographic distance between these children,
researching childhood cancer can be challenging. As such, the Childhood
Cancer STAR Act would authorize the National Cancer Institute (NCI) to expand
existing efforts to collect biospecimens for childhood cancer patients enrolled
in NCI-sponsored clinical trials to collect and maintain relevant clinical,
biological, and demographic information on all children, adolescents, and young
adults with cancer.
Improving Childhood Cancer Surveillance: Building upon previous efforts, this bill would authorize
grants to state cancer registries to identify and track incidences of child,
adolescent, and young adult cancer. This funding would be used to
identify and train reporters of childhood cancer cases, secure infrastructure
to ensure early reporting and capture of child cancer incidences, and support
the collection of cases into a national childhood cancer registry.
Improving Quality of Life for Childhood Cancer
Survivors: Unfortunately, even after beating
cancer, as many as two-thirds of survivors suffer from late effects of their
disease or treatment, including secondary cancers and organ damage. This
legislation would enhance research on the late effects of childhood cancers,
improve collaboration among providers so that doctors are better able to care
for this population as they age, and establish a new pilot program to begin to
explore innovative models of care for childhood cancer survivors.
Ensuring Pediatric Expertise at the National
Institutes of Health (NIH): The Childhood
Cancer STAR Act would require the inclusion of at least one expert in pediatric
oncology on the National Cancer Advisory Board and would improve childhood
health reporting requirements to include pediatric cancer.