Memorandum

Childhood Cancer 1

To: Fred Upton,ChairmanoftheEnergyandCommerceCommittee

From: Hana Scully
Date: November 12, 2016
Subject: Childhood Cancer Research & Treatment Policy
Childhood cancer is a devastating disease that affects over 15,780 children and
their families in the United States per year. Cancer is the leading cause of death by
disease in the children and adolescents. Despite this fact, childhood cancer research,
clinical trials and family support is underfunded. This health policy brief will address the
impact childhood cancer has on children and their families, as well as the impact limited
funding will have on research, and treatment provided for pediatric cancer and the
childhood STAR act (survivorship, treatment, access, and research).
Child hood cancer is a global health issue that needs our immediate attention. We
must promote funding and research to help find a cure or alternative options for treating
symptoms related to cancer. Childhood cancer awareness is being recognized in the
United States, but at a rate, which is too slow to help those who are struggling from
limited treatment and research. Without funding for treatment and research, there will be
no cure for this devastating disease. Until then cancer will continue to take lives and
privileges away from children and adolescents. I propose a resolution that will promote
the on-going efforts to increase pediatric cancer awareness, treatment and research.
Background:
Since 1975 mortality rates have decreased by 80%. This has happened with only
4% of NCI funding being spent on pediatric oncology. Although some progress has been
made over the past 40 years, there has been little improvement during the past 10 years.
This is due to the large funding gap that limits research and the ability to find a cure.
Although there has been a decrease of mortality rate, diagnosis of pediatric cancer is up
29% in the past twenty years (NCI, 2015).

Childhood Cancer 2

According to the National cancer institute (NCI) (quote) pharmaceutical companies spend

60% of their budget on adult cancer drugs and only about 2% is spent on pediatric cancer.
The NCI spends 96% of its funds on adult cancer research and treatment. The remaining
4% of the NCI budget goes toward pediatric cancer research.
In the past 20 years, the FDA has only approved two drugs for childhood cancer
according to the NCI (NCI, 2015).

The childhood STAR act of 2015 S.1883 was first introduced to congress in July 2015.
This act is currently pending in the house of energy and commerce committee. This bill
amends the Public Health Service Act to permit the National Institute of Health (NIH) to
provide support to collect the medical specimens and information of children,
adolescents, and young adults with cancer. This support improves the understanding of
these cancers and of the effects of treatment.

Research and evidence on childhood cancer that supports this bill are:
According to the NCI (NCI, 2015) each year in the United States there are an estimated
15,780 children between birth and the age of 19 diagnosed with cancer. Approximately 1
in 285 children in the United States will be diagnosed with cancer before their 20th

birthday.
While the cure rates for some childhood cancers are now over 80%, the survival rates for

many cancers in children remain extremely low (American Cancer Society, 2015).
According to the Centers for Disease Control and Prevention, (CDC, 15) cancer
continues to be the leading cause of death by disease in children and adolescents under

the age of 15.

By 2020, the population of childhood cancers survivors is expected to be 500,000

individuals (International Agency for Research on Cancer, 2015).

Collection of biospecimens, along with clinical and outcome data, on the maximum
possible number of children with cancer in the United States is necessary to improve
childhood cancer treatments and cures. Currently biospecimens, and clinical and outcome
Childhood Cancer 3
data, are collected for less than half of children in the United States with cancer (NCI,

2015).
Pharmaceutical companies have been reluctant to develop drugs appropriate for children
with cancer because it requires making an investment in products that are unlikely to

cover the high costs associated with their research, development, marketing, and

distribution (NCI, 2015).

According to the American Cancer Society, (ACS, 2016) two-thirds of children with
pediatric cancers suffer long term effects from treatment including loss of hearing and

sight, heart disease, secondary cancers, and learning disabilities.

The NCI, including the National Cancer Institute, invests approximately half of their
annual appropriations to support basic research. This research serves as the foundation for
clinical research for all diseases and conditions, with the potential to lead to
breakthroughs for children with cancer. Virtually all progress against cancer has been
founded in basic research, often in areas not directly related to the disease (NCI, 2015).
Policy solutions:
Considerations for this policy would entail grants awarded for funding research

and treatment for pediatric cancer. This grants can be used for:
Pilot health delivery programs which can answer questions about the optimal ways to
provide health care, follow-up monitoring services, and survivorship care to those

diagnosed with childhood cancer (STAR act 2015).

The Secretary, acting through the Director of the Centers for Disease Control and
Prevention, shall award grants to State cancer registries to enhance and expand
infrastructure to track the epidemiology of cancer in children and adolescents (STAR Act

2015).
Fund nursing and psychosocial grants to improve palliative care for the quality of life for

children and families with cancer.

Allow more children to participate in clinical trials. A clinical trial can give a child
access to new treatment options which may be more productive than the current standard
of care.

Childhood Cancer 4
Enhance the life for childhood cancer survivors facing long term effects caused by toxic d
drugs used during their treatment. As well as provide long term follow up examinations.
Those opposing the increased of funds to develop and advance treatments are
pharmaceutical companies. The small population of children with cancer provide little
market incentive for the pharmaceutical industry to develop new pediatric oncology
drugs. These pharmaceutical companies do not commit resources to childhood cancer

research because the adult cancer drug business is more profitable and creates less of a
risk. Organizations that support narrowing this funding gap are the National Cancer
Institute, Center for Disease Control, American Cancer Society, and American Childhood
Cancer Organization. The FDA is working to promote earlier consideration and approval
of treatments for children.
Recommended Solutions:
Childhood cancer deserves the same amount of funding and research as adult
cancer. In order to assure their access to new and effective medications is available, we
must increase funding for pediatric oncology research, treatment, and clinical trials. By
increasing funding and research studies, we would be able to aviod possible harm when
prescribing these medications. Our potential through science has never been greater. We
must utilize our funding and in turn expanded treatments, new drug availability, and new
cures
Funding for childhood oncology should be held at the same standard as adult
cancer. The STAR bill act recommends the Department of Health and Human Services
must: (1) support pilot programs to develop or study models for monitoring and caring
for childhood cancer survivors throughout their lives, (2) convene a Workforce
Development Collaborative on Medical and Psychosocial Care for Pediatric Cancer
Survivors, (3) establish a task force on standards for high-quality childhood cancer
survivorship care, and (4) carry out a demonstration project to improve care coordination
as childhood cancer survivors transition to adult care (STAR Bill, 2015). The Star Act
will maximize discovery, and accelerate development and availably, of promising
childhood cancer treatment.