Download here - Gavin`s Galaxy

[Your Name]
[Street Address]
[City, ST ZIP Code]
[Date]January 25, 2017
Senator [Recipient Name]
[Company Name]
[Street Address]
[City, ST ZIP Code]
Dear [Recipient Name]:
As a constituent who cares about children with cancer, I urge you to support the recently introduced
Childhood Cancer STAR Act (H.B. 3381 and S. 1883) by signing on as a co-sponsor. I am urging you to
support the many children right here in our community fighting for their lives.
This year alone, an estimated 15,780 children will be diagnosed with cancer in the U.S. and 1,960 of them
will die because of their cancer diagnosis. The average age of a child at diagnosis is 6 years old – forcing
the entire family to face the unthinkable just when they should be enjoying school, making friends, and
doing family activities. While we have seen progress in survival for some types of childhood cancer, it
remains the number one cause of death by disease for children in our country. Moreover, for the nearly
380,000 survivors of childhood cancer now living in the U.S., most experience significant and distressing
symptoms and conditions – sometimes appearing years after their treatment ends in the form of late
effects resulting from their life-saving treatments, causing health challenges that last their lifetime.
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.
[Recipient Name]
[Date]
Page 2
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.
For more information or to become a cosponsor of the Childhood Cancer STAR Act, please contact
[email protected] with Rep. McCaul; [email protected] with Sen. Reed;
[email protected] with Rep. Van Hollen; or [email protected] with Rep.
Speier.
Thank you in advance for your time. I hope I can count on your support to help children with cancer.
In addition, we would like to ask you to meet with our advocate, Sam Abdelmessih of Gavin’s Galaxy,
who is available to meet with you at your convenience. He can be reached by emailing
[email protected] or via mail: Sam Abdelmessih; Gavin’s Galaxy; PO Box 62181; Houston, TX
77205. Thank you again for your support and I hope we can count on you to help our children.
Sincerely,
[Your Name]
[Title]