How To Demand For Research Funding
It was one year ago, we were about 4 months into our loss journey and Steve and I got on a plane and headed to DC for Childhood Cancer Action Days. Our wounds were fresh but we knew we needed to share Hayes’ story with our representatives because if we don’t speak up, nothing will change. So, we went to representative to senator and so on to tell our boys heroic story and ask for more funding for childhood cancer research.
Because of our fight, we were able to help push the STAR Act through the Senate. Now it sits in the House waiting to be passed. While Steve and I wish we could head back to DC this year to demand change, it is not an option for us, so we have to find ways to fight from home, and today I am sharing with you exactly how you can do that as well. Here are the ways you can help from the comfort of your home.
1. Call your Representative and tell them to pass the STAR Act.
Hi, my name is ________. I’m a constituent from ____(hometown)____. Could I please speak to the Representative's Legislative Assistant who handles health care? I am calling today to urge the Representative to pass HR 820 The Childhood Cancer STAR Act. Children with cancer have no time to waste and we are counting on (him/her) to take action to save children’s lives and help them to survive and thrive.
**If they are a supporter of STAR (check on the STAR Act Sponsor Map) Thank them for their support and urge them to talk to leadership about passing the STAR Act now!
2. Call your Senator and ask them to fully fund the STAR Act.
Hi, my name is ________. I’m a constituent from ___(hometown)____. Could I please speak to the Senator's Legislative Assistant who handles health care? I am calling today to urge the Senator to sign onto the appropriations letter to fully fund S 292 The Childhood Cancer STAR Act, which recently passed the Senate in March. Children with cancer have no time to waste and we are counting on (him/her) to take action to save children’s lives and help them to survive and thrive.Thank you for passing the Childhood Cancer STAR Act and please help us take the next step to ensure its full funding!
3. Post on Social Media – and ask others to do the same.
Social Media Matters!
The Alliance for Childhood Cancer has made it easy for you to reach your Members of Congress on Twitter.
Visit http://www.soundoffatcongress.org/enlF and use the STAR Act Sound Off to include your Representatives’ Twitter handles in your posts.
Be sure to include the hashtags #StepUp and #STARAct.
4. Email your representatives
Click on the links below to find out the exact email addresses of your congressmen. And I have put an email below that you can copy and paste into the body of your email. How easy is that?
Your voice is an integral part of the fight! Together we can show these warriors and their families that truly, no one fights alone!
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.
This year alone, an estimated 15,780 children will be diagnosed with cancer in the U.S. 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.
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 Andy.Taylor@mail.house.gov with Rep. McCaul, Jill_Brimmer@reed.senate.gov with Sen. Reed, Ziky.Ababiya@mail.house.gov with Rep. Van Hollen, or Molly.Fishman@mail.house.gov with Rep. Speier.
Thank you in advance for your time. I hope I can count on your support to help children with cancer.