In an effort to help thousands of children who undergo cancer treatment each year, U.S. Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) introduced the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act. This bipartisan legislation will advance paediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, and providing resources for survivors and those impacted by childhood cancer.
“Too many young people’s lives have been cut short by cancer. These kids and their families who’ve battled this disease inspire us to take action. The Childhood Cancer STAR Act will help young cancer patients and their families get access to potentially life-saving treatments, support survivors, and move us another step closer toward our goal of ending pediatric cancer,” said Senator Reed.
“This bipartisan legislation will continue the advances in research, prevention and care for our loved ones and families impacted by childhood cancer,” said Senator Capito. “The Childhood Cancer STAR Act gives parents and patients access to the information they need to make vital decisions about treatment and care post-treatment. This legislation will also give those who understand the unique needs of childhood cancer patients a seat at the table when decisions about cancer care are taking place.”
Why Should the STAR Act be a Priority?
- Cancer is the #1 disease killer of children in the United States today;
- Approximately 1 in every 285 children under 20 are diagnosed with childhood cancer every year;
- 2 out of every 10 children diagnosed with cancer will not survive;
- 25% of childhood cancer survivors will suffer from one or more serious health problems stemming directly from their cancer and/or their treatment;
- Of the more than 10 new cancer drugs developed since 1990, only two were developed and approved by the FDA specifically for childhood cancer.
The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.
- 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, including a study on insurance coverage and payment of care for childhood cancer survivors; 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 Patients Access to Publicly Available Compassionate Use Policies: Compassionate use– the process by which a patient with a serious or life-threatening illness can be granted access to therapies still in development and outside of the clinical trial setting, when there is no comparable alternative – is often challenging for patients and their doctors to navigate. This legislation would ensure that pharmaceutical companies have publicly accessible compassionate use policies and would require FDA to finalize its guidance and address regulatory uncertainties for industry on the issue.
- Ensuring Pediatric Expertise at the National Institutes of Health (NIH): The Childhood Cancer STAR Act would require the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.
The Childhood Cancer STAR Act of 2015 (H.R. 3381, S. 1883) was passed by the U.S. House of Representatives during the 114th Congress, but did not clear the Senate before the end of the session this past December 2016.
The following is a statement from David F. Arons, JD, Chief Executive Officer, National Brain Tumor Society, on the reintroduction of the Childhood Cancer STAR Act:
“The reintroduction of the Childhood Cancer STAR Act in the 115th Congress is a meaningful step toward providing vital resources and support to the fight against pediatric cancers, including brain tumors. With its introduction early in the Congress, we are hopeful legislators will move quickly to pass the STAR Act in the House and Senate.
Brain tumors are, unfortunately, the leading cause of cancer death in all children and adolescents ages 0-19, having recently surpassed leukemia for this dubious distinction. Brain tumors are now responsible for three out of every 10 pediatric cancer deaths. These alarming statistics highlight the all-too-real repercussions of inadequate national attention and policy solutions for our most vulnerable patients.
Thankfully, the Childhood Cancer STAR Act shines a bright light on pediatric cancer research, drug development, and treatment needs. This comprehensive and bipartisan legislation makes much-needed investments in research, including the collection of biospecimens and improvement in the monitoring of trends that inform scientific efforts and ultimately the development of new treatments, as well as enables the creation of survivorship care.
As a leading organization representing the estimated more than 28,000 children living with brain tumors in the United States, their families and loved ones, we commend the leadership and commitment of the bills’ original sponsors: Sens. Shelley Moore Capito (R-WV), Jack Reed (D-RI), Chris Van Hollen (D-MD) and Johnny Isakson (R-GA) as well as Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA) and G.K. Butterfield (D-NC). We also commend fellow members of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer, who have tirelessly advocated for the bill.
Again, we urge Congress to take-up this legislation at its earliest opportunity and ensure that it is swiftly put to vote and approved for the president’s signature. Despite dedicated efforts, pediatric brain tumor research has not generated advances that have translated into meaningful clinical benefit for children with this devastating disease in decades. This is unacceptable and underscores the absolute urgency with which pediatric brain tumors, and all cancer, need to be addressed as a biomedical research priority moving forward. While we just missed the possibility of seeing this legislation passed in 2016, we must ensure we do not lose this opportunity to make a major impact for kids with cancer in 2017.
While this Bill may be under contention in the United States and not in South Africa, it has far-reaching global benefits for every Child with Cancer, and the Little Fighters Cancer Trust joins with every American in hoping that this Bill will become law very soon.
Too many children are still needlessly dying from cancer because not enough is being done to research Pediatric Cancer and minimal funding is given for research and the development of new drugs to fight this scourge that is robbing too many parents and the world of too many young lives.
We trust that Childhood Cancer will be accorded the priority it deserves from the Trump Administration and that they will pass it without delay. #stepup