American Childhood Cancer Organization

Advocacy e-Bulletin to Strengthen our Community 

November 2011


Executive Order
Impact Survey Results
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Children with cancer rely on us as their family, friends and community to be their voice. While they fight cancer in their bodies, we must be ready to fight this disease as their advocates. They cannot lobby. They cannot vote. They must use their collective strength to fight the cancer. We must use our collective strength to fight the "system."  We must educate ourselves on legislation that can positively impact our children's treatment. We must be willing to take time to call our government representatives and let them know how this disease impacts our families.


We are the "grassroots voice" of this cause. We have a lot of work to do as we strive towards the day when all of our children will survive and lead a long and healthy life. Thanks to all of you who continue to join together with ACCO to strengthen our grassroots voice. We do this "because kids can't fight cancer alone." 

Ruth I Hoffman MPH, Executive Director


Presidential Executive Order
Reducing Prescription Drug Shortages

Office of the President of the United States

October 31, 2011, Washington D.C.    

President Barack Obama today issued an Executive Order aimed at reducing the nation's critical drug shortage.


In the last five years, the number of new drug shortages has more than tripled. In 2010, there were 211 medications including essential chemotherapy drugs in short supply. It is estimated that the 2011 drug shortage will surpass 300 life-saving medications including drugs used as standard of care to treat child and adult cancer.


As part of the President's Administration's broader effort to work with manufacturers, health care providers, and other stakeholders to prevent drug shortages, this order directs the FDA to take steps that will help to prevent and reduce current and future disruptions in the supply of lifesaving medicines.
Childhood Cancer Diagnosis
Impact on Family Survey Results

Every day 36 children are diagnosed with cancer in the U.S-36 families X 365 days. Childhood cancer is a disease that impacts the entire family. Families must take extensive amount of time to learn about their child's diagnosis. Often one parent takes time from work to provide care for their sick child. Families are faced with enormous out-of-pocket costs related to caring for their child with cancer as well as additional costs resulting from providing care for other children while they are at the hospital.


ACCO asked families a year ago to take time from your already busy schedules to complete ACCO's survey on the impact of their child's cancer diagnosis on their family. Almost 1,000 families have responded so far. You let us know who you turned to as a source of information. You told us how deeply the diagnosis impacted your family financially and who you turn to for help when needed. You told us whether your child was offered a clinical trial, where you were referred to for treatment, and whether you needed respite care. You not only gave us insight into the impact of your child's diagnosis on your family, you provided us with valuable data that has never been gathered before from so many families. This data was presented by our Executive Director at the International SIOP meeting held in New Zealand last week.


I want to thank each of you who took the time to complete the survey, and encourage those who haven't - to do so. We will continue to gather data from on-going responses to the existing survey, and will also be adding more surveys to gather other important data. Your responses to those surveys will be just as important as it allows us to more fully identify the needs of our unique patient population and work with state and federal agencies to help reduce the enormous disease burden.


For those who are interested in viewing the results of the 990 families who responded to ACCO's survey on the impact of the diagnosis on the family, please click here.

The term "grassroots" refers to a group of people who have been impacted by a cause and who stand united behind a movement to make a difference in that cause.  As families of children with cancer we are the grassroots voice of our nations' children with cancer. In order to strengthen our grassroots community we need to be informed about policies, legislation, decisions, and opportunities that impact our children's treatment and quality of life, and advocate for better treatments for those children who have yet to be diagnosed.