Backing the Comprehensive Cancer Care Improvement Act
An open letter from Ellen Stovall, a 33-year cancer survivor and president and CEO of the National Coalition for Cancer Survivorship

I expect that as you read this, you may be dealing with a family member, friend or colleague who is experiencing the distress that comes with a cancer diagnosis. I know that is what I struggle with, as friends and family turn to me and ask, “What can be done?”

For nearly 20 years, the National Coalition for Cancer Survivorship (www.canceradvocacynow.org) has advocated that cancer survivorship begins at diagnosis and continues for the rest of one’s life. While that is something we can all understand, our healthcare system does not have clear policies and practices to address the distress associated with cancer. That is why we need your support for a vital initiative to improve the lives of all cancer survivors.

NCCS wants to improve access to palliative care and symptom management for Americans living with cancer. We have drafted a bill, the Comprehensive Cancer Care Improvement Act, and seek Congressional supporters.

The issue of palliative care and symptom management is of vital concern to cancer patients and their families. Palliative care and symptom management is medical care that lessens pain or side effects from cancer treatment. It helps make patients more comfortable at every stage of their illness. Sometimes there is confusion about when a patient should have access to a full range of supportive care. Some think it is only available for those who are dying. NCCS disagrees.

NCCS has long advocated that a person with cancer should receive palliative care and symptom management at the same time they receive anti-cancer treatment—at any stage of their illness. This is our position because in addition to helping patients cope with pain, fatigue, nausea and vomiting, caregivers trained to adequately treat these symptoms also assist patients with important treatment decisions and support their emotional, social, spiritual and practical needs. A 2001 report of the Institute of Medicine’s National Cancer Policy Board found that this vital care is not always offered to patients. It also found that Medicare and most insurance companies don’t adequately pay for it.

The bill has several key provisions. It directs Medicare to pay for doctors (in consultation with patients) to develop comprehensive treatment plans that identify treatment options and appropriate symptom control and palliative care. This is a crucial change in cancer care that will assure that all aspects of a patient’s care are explored at the most important time—between diagnosis and the first course of treatment. The bill includes a Medicare demonstration program to evaluate the impact on the quality of cancer care and overall costs of allowing access to comprehensive symptom management from the time of cancer diagnosis. It also calls for grants to expand existing palliative care and symptom management programs at cancer centers, hospitals, hospices and other providers with palliative care experience. And the bill provides for increases in funding for professional training of medical and other personnel in the cancer symptom management field.

Taken as a whole, these provisions lay the foundation for future full medical coverage for good palliative care and symptom management, expanded use of existing care methods by providers and involvement of patients in decisions about their care.

We do not expect immediate Congressional passage of our bill. Unfortunately, the wheels of Congress do not move quickly and change comes slowly. But we have taken the first steps on this issue and are committed to doing the footwork and vigorous advocacy to see it through to reality. This has been NCCS’s track record for nearly 20 years and it is our pledge to you now.

But we need you to help us get the job done. Please lend your voice to our legislative efforts as we move this important bill forward by becoming involved in our grassroots legislative advocacy network—Cancer Advocacy Now! (www.canceradvocacynow.org).

Thank you for your support of our efforts. Together we can change care for all people with cancer.

On July 11, attendees from the CURE Patient & Survivor Forum in Washington, D.C. can visit their elected officials to lobby for passage of the Comprehensive Cancer Care Improvement Act.