November 7, 2005

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Cancer Survivors Urged to Take Action for Better Health Care
IOM Report Confirms Lack of Follow-Up Care for Survivors


(Washington, DC)
—The National Coalition for Cancer Survivorship (NCCS) responded today to the latest Institute of Medicine (IOM) report addressing adult cancer survivorship with a plea to cancer survivors to take action in their own post-treatment health care.

The IOM report, entitled From Cancer Patient to Cancer Survivor: Lost in Transition, confirms what advocacy groups like NCCS have been saying for years – that there is no system of post-treatment care for cancer survivors in the United States and that people are suffering as a result.

Today there are more than 10 million people living with cancer, versus only 3 million in 1971. While people with cancer are living longer, they are not receiving the follow-up care they need. Cancer survivors are at greater risk of recurrence or developing new cancers, often suffer side effects from their treatment and may have emotional and social issues – all of which require quality follow-up care.

Ellen Stovall, a 33-year cancer survivor, co-editor of the IOM adult cancer survivorship report, and president and CEO of NCCS states, “By exposing a glaring gap in care, this report provides cancer survivors, policy makers, federal agencies, health care professionals and advocacy groups like NCCS the evidence needed to effectively change and improve the quality of cancer care in the United States.”

Although not all of the recommendations in the report are directed to cancer survivors, it stresses that survivors need to play a bigger role in helping to change the existing health care system to better their own lives and the lives of survivors in the years to come.
Cancer survivors need to educate themselves about their disease, treatments and potential side effects in order to advocate for themselves. To gain more ownership of their health care, NCCS recommends that cancer survivors act upon the following measures:

1. Request a Cancer Care Summary and Survivorship Care Plan- Upon completing treatment request a formal consultation with your doctor and ask him/her for a Cancer Care Summary (a summary of your diagnosis and treatment) and a Survivorship Care Plan (a plan for follow-up care after primary cancer treatment). For more information from the Institute of Medicine’s report on what a “Survivorship Care Plan” should include, please click here.

2. Familiarize Yourself with Local Resources to Address Social and Emotional Issues- Many survivors face emotional stress, employment discrimination and inadequate access to health insurance. But local community organizations offer counseling and guidance to help cancer survivors overcome these obstacles. It is important that you familiarize yourself with these resources, so you can ask for help when needed.

3. Take Action- Being a proactive, educated self-advocate means feeling comfortable communicating your post-treatment needs, so that you can improve the quality of your life and the ongoing health care you receive. Beyond advocating for your own care, you can advocate for others in your local community and at the federal level to ensure that all cancer survivors are receiving quality cancer care. To join NCCS’s Cancer Advocacy Now!™ network in their efforts to influence policy at a federal level, visit

“We at NCCS believe that the more educated cancer survivors become about survivorship issues, the more empowered they will feel. And, learning to be a self-advocate can improve a cancer survivor’s overall quality of life,” remarked Ellen Stovall.



For more information about NCCS and cancer survivorship, please visit NCCS online at

The National Coalition for Cancer Survivorship is the oldest survivor-led cancer advocacy organization in the country and a highly respected authentic voice at the Federal level, advocating for quality cancer care for all Americans and empowering cancer survivors.  NCCS President & CEO Ellen Stovall is a 33-year survivor of two bouts with cancer. 


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