Grassroots Action Center

Childhood Cancer Survivorship Research and Quality of Life Act of 2009 (H.R. 2109)

Become an advocate in 3 simple steps:

1. Find your Rep's info using tool below

2. Copy and paste the sample letter (edit the parts in red and add your own story)

3. Send!

Type in your zip code above to find out who your Congressional Representative is. Click on his or her name to access their website and get their contact information. Then, use this sample letter to help you write a letter to your Representative urging him or her to support this important survivorship bill. Feel free to add a paragraph about your own cancer story to personalize the letter!

(TIP: You can usually find a "Contact Me" button on the Member's website, which will allow you to send them the letter by email or an electronic form!)

About HR 2109:

The Childhood Cancer Survivorship Research and Quality of Life Act of 2009 is bipartisan legislation that will improve and expand the delivery of medical and psychosocial care to survivors of childhood cancer. The Act highlights statistics on childhood cancer survivorship, noting disparities in access to the cancer care continuum among minority, poor, and underserved communities, and emphasizing the importance of monitoring and follow-up care for both survivors and the research community.

Reflecting the recommendations of the 2003 IOM Report on Childhood Cancer Survivorship, major provisions of the legislation include:

CDC Cancer Control Programs

· The Centers for Disease Control and Prevention (CDC) and the National Cancer Institute shall provide guidance to states and encourage states to improve systems of care for childhood cancer survivors.

· The Secretary of Health and Human Services shall enhance cancer control programs, including comprehensive state cancer control plans and surveillance activities, to improve systems of care for childhood cancer survivors.

NIH Cancer Survivorship Programs

· The National Institutes of Health (NIH) shall expand and coordinate activities with respect to cancer survivorship research, including childhood cancer survivorship.

· The NIH will give priority to providing a comprehensive assessment of the prevalence and etiology of late effects of cancer and its treatment, including physical, neurocognitive, and psychosocial late effects.

· The NIH will make grants for research in causes of health disparities in childhood cancer survivorship.

· The Secretary will provide grants to establish or improve training programs for health professionals to deliver quality follow-up care that is linguistically and culturally competent to childhood cancer survivor.

· The NIH will provide grants to establish pilot programs to develop, study, or evaluate model systems of monitoring and caring for cancer survivors.

Clinics for Comprehensive Long-Term Follow Up Services for Childhood Cancer Survivors

· The Secretary will make grants to establish and operate childhood cancer survivorship clinics for comprehensive long-term follow up services for childhood cancer survivors.

Grants to Improve Access to Care for Childhood Cancer Survivors

· The Secretary shall make grants to recognized childhood cancer professional and advocacy organizations to improve physical and psychosocial care for childhood cancer survivors, with an emphasis on minority or other medically underserved populations.

More Information on HR 2109:

Press Release: CCCA Supports Introduction of the Childhood Cancer Survivorship Research and Quality of Life Act

"Dear Colleague" Letter from the bill sponsors, Reps. Jackie Speier and Mary Bono Mack